Handouts COUNSELLING TRAINING MODULES. for VCT, PPTCT and ART Counsellors. National AIDS Control Organization

Transcription

1 HIV COUNSELLING TRAINING MODULES for VCT, PPTCT and ART Counsellors Handouts National AIDS Control Organization Ministry of Health and Family Welfare Government of India with technical support from WHO UNICEF CDC

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3 Produced and published by National AIDS Control Organization Ministry of Health and Family Welfare Government of India with technical support from WHO UNICEF CDC Published in May 2006 NACO, 2006 More information on Technically edited, designed and typeset by Byword Editorial Consultants ii

4 Contents Abbreviations... v Background... vii Introduction... xi Key points for conducting trainings... xiii Module 1. Basic information on HIV/AIDS, and HIV testing and counselling Submodule 1: Overview and epidemiological issues for voluntary counselling and testing...1 Submodule 2: Introduction to HIV testing Submodule 3: Role of VCT in HIV prevention, care and support Module 2. Basic counselling techniques Submodule 1: Orientation to HIV and AIDS counselling Submodule 2: Values and attitudes of a counsellor Submodule 3: Counselling: Micro-skills Submodule 4: Stages and process of counselling Submodule 5: Behaviour change communication: HIV transmission Submodule 6: Clinical risk assessment and HIV pre-test counselling Submodule 7: HIV post-test counselling Module 3. Prevention of parent-to-child transmission of HIV Submodule 1: Role of PPTCT in HIV prevention, care and support Submodule 2: Counselling for the prevention of parent-to-child transmission of HIV Submodule 3: Case management in the prevention of parent-to-child transmission of HIV Submodule 4: Infant feeding in the context of HIV infection Module 4. Counselling for specific target groups Submodule 1: Targeted VCT intervention: Injecting drug users (IDUs) Submodule 2: Targeted VCT intervention: Sex workers Submodule 3: Targeted VCT intervention: Youth and children Submodule 4: Targeted VCT intervention: Men who have sex with men (MSM) Submodule 5: Targeted VCT intervention: Mobile populations Submodule 6: Targeted VCT intervention: Prisoners iii

5 Module 5. Counselling for care and treatment Submodule 1: Antiretroviral therapy: Counselling and medical aspects Submodule 2: The purview of counselling in HIV/AIDS home-based care Submodule 3: The role of diet and nutrition in the management of PLHA Module 6. Counselling for other issues Submodule 1: Counselling for blood safety Submodule 2: Counselling issues related to HIV-STI co-infection Submodule 3: Counselling issues related to HIV-TB co-infection Module 7. Supplementary section: Advanced counselling skills Submodule 1: Group therapy Submodule 2: Family and marital counselling for patients with HIV/AIDS Submodule 3: Counselling for sexual assault Submodule 4: Crisis intervention and problem-solving counselling for patients with HIV/AIDS Submodule 5: Universal safety precautions and post-exposure prophylaxis Submodule 6: Management of psychological distress in patients with HIV/AIDS Submodule 7: Suicide risk assessment and management for patients with HIV/AIDS Submodule 8: Mental health issues associated with HIV/AIDS Submodule 9: Legal ethical issues related to HIV/AIDS Submodule 10: Identification and management of burn-out in caregivers and counsellors Submodule 11: Grief and bereavement counselling Evaluation Forms 1. Pre- and post-training knowledge questionnaire Pre- and post-training knowledge questionnaire: Answer sheet HIV counselling: Training evaluation HIV counselling: Trainer evaluation Annexures 1. Checklist for planning training Guidelines for conducting role-plays Guidelines for field visits Bibliography List of experts iv

6 Abbreviations AIDS ANC APCASO ART ARV AS ATS BCC BSS CARAM CBO CIRR CMV CSW CT DOT DOTS EBE ELISA EQA EQAS FACS FSW GFATM HAART HBV HCV HCW HIV HO HRB HST HSV HZV ICAAP ICMR IDU IVDU IEC Acquired immune deficiency syndrome Antenatal care Asia Pacific Council of AIDS Service Organizations Antiretroviral therapy Antiretroviral (drug) Activity sheet Amphetamine-like stimulants Behaviour change communication Behavioural surveillance survey Coordination of Action Research on AIDS and Mobility, Asia Community-based organization Client information record and result Cytomegalovirus Commercial sex worker Computerized tomography Directly observed therapy Directly Observed Treatment, Short-course Exotic becomes erotic (theory) Enzyme-linked immunosorbent assay External quality assurance External quality assurance scheme Fluorescent activated cell sort Female sex worker Global Fund to fight AIDS, Tuberculosis and Malaria Highly active antiretroviral therapy Hepatitis B virus Hepatitis C virus Health-care worker Human immunodeficiency virus Handout High-risk behaviour Humsafar Trust, Mumbai Herpes simplex virus Herpes zoster virus International Congress on AIDS in Asia and the Pacific Indian Council of Medical Research Injecting drug use/user Intravenous drug user Information, education and communication v

7 LFT MCH MRI MH MSM MTCT NACP NEP NGO NRTI NNRTI OI ORW PCR PEP PHC PI PID PLHA PPD PPTCT PPT PT PTSD QA QC RNTCP SACS SEARO SHG SOP SP STI SWAM TB ToT UNAIDS UNGASS VCTC VDT WHO Liver function tests Maternal and child health Magnetic resonance imaging Mental health Men who have sex with men Mother-to-child transmission National AIDS Control Programme Needle exchange programme Non-governmental organization Nucleoside reverse transcriptase inhibitor Non-nucleoside reverse transcriptase inhibitor Opportunistic infection Outreach worker Polymerase chain reaction Post-exposure prophylaxis Primary health centre Protease inhibitor Personal identification digit People living with HIV/AIDS Purified protein derivative Prevention of parent-to-child transmission PowerPoint presentation Proficiency test Post-traumatic stress disorder Quality assurance Quality control Revised National Tuberculosis Control Programme States AIDS control societies South-East Asia Regional Office Self-help group Standard operating procedure Session plan Sexually transmitted infection Society Welfare Association for Men, Chennai Tuberculosis Training of trainers United Nations Programme on HIV/AIDS United Nations General Assembly Voluntary counselling and testing centre Voluntary diagnostic testing World Health Organization vi

8 Background HIV COUNSELLING Counselling in the context of HIV has become important in the provision of prevention, treatment and care services over the past years. HIV counselling initially focused on prevention of HIV infection, HIV testing and dealing with the emotional and social impact of a positive HIV test. HIV counselling expanded to include counselling on prevention of parent-to-child transmission (PPTCT) of HIV, and on care for the baby. Most recently, with the introduction of antiretroviral therapy (ART), the scope of counselling further expanded to include preparedness and adherence counselling for people on ART. As part of the third phase of the National AIDS Control Pogramme (NACP-III), NACO will further roll out access to ART. Voluntary counselling and testing (VCT) centres and PPTCT services will be expanded from the current district and tertiary care level to CHC and PHC levels especially in rural areas. Integrated counselling and testing centres (ICTC) will be established to provide clients with a comprehensive package of information and counselling. The planned expansion requires a large cadre of qualified and skilled counsellors and peer counsellors to be available in the VCTCs, PPTCTs and ICTCs. Therefore, a set of comprehensive standardized HIV counselling training modules using a combination of teaching techniques (from lectures to hands-on demonstrations, roleplays, etc.) and regular HIV counselling trainings are important. The training modules provide hands-on training for counsellors to develop and finetune their skills, to increase their sensitivities and to be able to reach out to their clients. These training modules help counsellors in enhancing their counselling skills and in providing state-of-the-art counselling to their clients. NACO, with technical support from WHO, UNICEF and the Centers for Disease Control and Prevention (CDC), has developed the current HIV counselling training modules (2006) with an aim to provide standardized trainings to all cadres of HIV counsellors in the country. The training modules support the NACO s VCT, PPTCT and ART programmes. THE DEVELOPMENT OF THE HIV COUNSELLING TRAINING MODULES The NACO HIV Counselling Training Modules have been developed through six regional consultations and field-testing of the WHO South-East Asia Regional Office (SEARO) Voluntary HIV Counselling and Testing: Manual for training of trainers vii

9 between 2003 and 2005 held at Imphal, Chennai, Panchgani (Maharashtra), Ranchi, Delhi and Lucknow. A total of 235 teaching faculty from 111 institutions in 30 states, who were selected as master trainers (ToTs), underwent counselling training and provided technical inputs. In May 2004, a three-day national consultation conducted by NACO, and supported by WHO, with 38 master trainers and senior experts reviewed the comments and provided technical inputs for the development and standardization of the modules. Each topic had been assigned to two to three experts for review. Their comments and suggested modification were discussed by experts in small groups. Further, the content of modules from CDC, FHI, BPNI, UNICEF and NIMHANS were reviewed for inclusion. Dr Sushma Mehrotra (formerly Consultant Counselling, NACO) was the chief coordinator of the zero draft supported by Professor B.L. Barnes and her team from Mumbai including Ms Rohini Ramamurthy and Ms Tasneem Raja who edited the modules and gave the document its final shape. UNICEF took the lead in field-testing the zero draft of the HIV counselling modules during a 12-day training in Mumbai in October 2004 with 30 participants from six high-prevalence states and three moderate-to-low prevalence states primarily to validate the appropriateness of the modules for counsellors in HIV settings. The contents of the module were found to be extensive with clear session instructions and PowerPoint (PPT) presentations for trainers/facilitators and detailed handouts for trainees. The modules were considered useful as a standardized training tool to conduct uniform HIV counsellor trainings across the country. SOME HIGHLIGHTS OF THE PRESENT MODULES The VCT and ART parts of the current modules are based on the WHO-SEARO Manual which was developed for the Asian context by experts from Bangladesh, Bhutan, India, Indonesia, Sri Lanka and Thailand. The PPTCT parts of the modules are based on UNICEF training modules. UNICEF has been a key partner in the national PPTCT programme and works closely with NACO and State AIDS Control Societies (SACS) to ensure quality in PPTCT services of which counselling is an important part. The modules cover VCT issues including counselling for risk reduction and facilitating HIV test decision. The PPTCT parts address issues related to HIV testing, care of pregnant women and infant feeding. The ART parts provide training in basic counselling skills on treatment preparedness, adherence and follow-up counselling. The ART module further includes specific issues when providing HIV counselling viii

10 for high-risk and vulnerable groups such as CSW, MSM, IDU and young people. Additional topics are introduced in the current modules to enrich the contents of training: Crisis intervention and problem-solving counselling Family counselling Infant feeding counselling Mental health issues and suicide prevention in HIV Role of PPTCT in HIV prevention Group counselling Managing psychological distress Grief counselling Counselling for occupational stress and burn-out Legal and ethical issues Nutrition counselling ART counselling Home-based care Organization of the HIV Counselling Modules The material for the HIV Counselling Training Modules is divided into two folders. The folder titled Facilitator s Guide is meant for training organizers, trainers and facilitators. It contains, for each training session (submodule), a detailed session plan with information on the content of the session, materials required, and instructions on how to conduct the session in a logical manner. The folder also includes ready to use PowerPoint presentations and specific session activities which need to be conducted with the trainees. Some activity sheets will need to be photocopied beforehand for use by the trainees during the training. The folder titled Handouts is meant to provide detailed background information on each topic and complement the information provided by the facilitator/trainer during the session presentations. It is therefore important that facilitators/trainers are familiar with the content of the handouts. Ideally, to enable them to prepare beforehand, the trainees should be given the respective handouts a day before the session presentations are to be conducted. At the end of the training, each trainee has a complete set of handouts which they can take back with them for future use and easy reference. However, as is the case with all training materials, the contents of these modules need to be revised and updated periodically and should always be reviewed and updated by the trainers before conducting trainings. ix

11 HIV COUNSELLING TRAININGS The modules can be used as a complete 12-day training package when providing induction training to counsellors or these can be used in parts during refresher trainings to meet the specific needs of the counsellors. The proposed 12-day and 5-day training schedules have been included as guidance for training course organizers. These need to be adapted to the specific training requirements and availability of resource persons. NACO envisions that the standardized HIV counselling trainings will support the scale up of quality VCT, PPTCT and ART services. The modules will allow the states to build the capacity of local institutions for regular training (induction and refresher trainings) of counsellors. The same institutions can be engaged to provide ongoing support for counsellors which includes mentoring, supervision and monitoring. The goal is to make available quality HIV counselling services close to people s doorsteps as entry points to HIV prevention and care for all segments of society in all parts of the country. x

12 Introduction CONTEXT Within the South and South-East Asia Region, an estimated 7.4 million are people living with HIV/AIDS (PLHA) (as of December 2005). This region ranks second in HIV prevalence, after sub-saharan Africa, and accounts for about 20% of new annual HIV infections globally. The epidemic in India is varied, with areas of generalized epidemic in the South and North-east, and with pockets of concentrated epidemics and highly vulnerable regions with low-levels of HIV infection. At the end of 2004, 5.3 million Indians were estimated to be infected with HIV. A hundred and eleven districts in the country are classified as high HIV prevalence districts. Transmission of HIV is predominantly through the sexual route (86%). Other routes include injecting drug use (IDU) (2.4%), vertical transmission from mother to child (3.6%) and transfusion of blood and blood products (2%), and others (6%) (as of July 2005). HIV transmission is on the increase among both adults and children in most parts of the country. Regional trends indicate increases in the occurrence of sexually transmitted infections (STIs). The extent of HIV infection in many states and rural areas is currently unclear. Increasing the reach of voluntary counselling and testing (VCT), prevention of parentto-child transmission (PPTCT) and antiretroviral therapy (ART) interventions enables and encourages people with HIV to access appropriate care and treatment early and strengthens prevention of HIV infection in the community. In NACP-III, VCT, PPTCT and ART services will be expanded up to the sub-district level. VCT AND PPTCT GATEWAYS TO PREVENTION, TREATMENT AND CARE Both VCT and PPTCT provide important entry points to prevention, care and treatment services, and have the following benefits. They Increase awareness about HIV/AIDS and its modes of transmission Strengthen prevention and facilitate behaviour change (risk reduction) Facilitate behaviour change in both HIV-negative and HIV-positive people. It supports HIV-negative clients to remain negative and HIV-positive clients to prevent the further spread of HIV (positive prevention) Help in acceptance and coping with one s serostatus Provide psychosocial support through referral to social and peer support Identify the need for prophylaxis and effective ART xi

13 Reduce parent-to-child transmission of HIV Facilitate early management of HIV-related infections and STIs Facilitate planning for the future Encourage orphan care Promote will making Increases the visibility of HIV in communities, thus normalizing HIV/AIDS. Factors that contribute to high-quality VCT and PPTCT services include easy accessibility; a non-threatening environment; confidentiality of client information; skilled, sensitive counsellors and experienced laboratory technicians. TRAINING AND EDUCATION High-quality and skilled counsellors are not born, nor is basic orientation and skillbuilding for counselling sufficient to deal with all aspects of HIV/AIDS. Training forms the cornerstone for developing competent and effective HIV counsellors who can support the various aspects of the programme. Counselling is not merely the provision of information or advice. Counselling is a process of enabling an individual to take personal decisions in the context of HIV/ AIDS. Thus, counselling can include facilitating a client s decision whether or not to undergo an HIV test or preparing clients for lifelong ART. The conviction held by NACO is that clients accessing a VCT, PPTCT or ART centre need to understand the context of HIV/AIDS from prevention to treatment and care. The HIV counsellor needs to equip the client to prevent HIV infection, to make an informed choice about HIV testing, to cope with an HIV test result and to understand the implications of lifelong treatment. Thus, HIV counsellors are challenged not only to keep abreast with new trends in HIV/AIDS prevention, treatment and care but also to continually fine-tune their skills and to equip themselves to address the various needs of their clients in the most comprehensive and sustainable manner. The objective of these training modules is to provide HIV counselling skills to healthcare workers, especially counsellors. The modules address an array of knowledge and skills required for effective HIV counselling in VCT, PPTCT and ART settings. OBJECTIVES OF THE HIV COUNSELLING TRAINING The objectives of the HIV Counselling Training are: To train a cohort of HIV counsellors To provide knowledge on prevention, treatment and care issues in HIV/AIDS To build and strengthen the skills of counsellors and health workers to provide quality VCT, PPTCT and ART counselling to their clients. xii

14 Key points for conducting trainings While no training can be exhaustive, these modules outline the key activities and information involved in training HIV counsellors. The training consists of seven modules organized into submodules with clearly stated objectives and session plans (SPs). Each submodule is divided into up to four sections which provide the content of the submodule and the detailed training resources: Session plan (SP), which provides an overview of the training content PowerPoint (PPT) presentation, which aids the trainer during the session Handout (HO), which provides background information for the trainees Activity sheet (AS), which provides information on the activities that are to be conducted Modules 1 6 contain the core HIV counselling content. Module 7 includes supplementary content providing advanced counselling skills. The section evaluation forms includes formats to evaluate the trainee s knowledge level before and after the training, and forms to assess the training and the trainers. The annexure contains guidelines, checklists and references. The complete training material is available on a CD-ROM for easy duplication and training preparation. Disclaimer The training programme requires supervised skills rehearsal; therefore, it is not suitable for use as a self-directed learning tool. Trainers are further advised that only those who have been trained as trainers should use the modules. It is not recommended that these modules be used by clinicians/trainers who have not participated in the specific training activities; doing so, may compromise the quality of the training. 1. SETTING THE STAGE FOR TRAINING No training is complete without the necessary preparation, in spite of the best training modules and resources. The preparation has to set the stage for learning and for achieving the training objectives. This includes: Adult learning styles must be planned for to ensure involvement of all trainees. Local language and terminology should be used during the trainings in settings where trainees are more conversant with the local language. xiii

15 A conducive environment should be established for learning through discussions, role-plays, brainstorming sessions and games. This helps to increase the trainees receptivity and learning potential. It also helps the trainer to understand the knowledge level and experience of the trainees. Field visits to VCT, PPTCT or ART centres can further illustrate key points and support the learning. A detailed guideline for conducting field visits is included in Annexure 3. An introduction and a conclusion to every topic helps the trainees recapitulate the main messages from the modules. Although the modules have been designed to address all aspects of the training, the ultimate success lies with the trainers and the training coordinator. This includes assigning modules to trainers/resource persons with appropriate experience and assuring that trainers familiarize themselves with the handouts, activities and presentations before the training. A detailed checklist for planning and organizing HIV counselling trainings is given in Annexure TRAINING SCHEDULE The complete set of modules cover a 12-day programme (including field visits and a day of holiday suggested on the sixth day of training), which may be adapted as appropriate for longer or shorter periods (see proposed 12-day and 5-day training schedules at the end of this section). However, sessions or modules should be added or subtracted according to their relevance to the culture and epidemic profile of the location where the training is conducted, time available for training and the level of practical experience of the trainees in hands-on patient management. 3. KEY CONSIDERATIONS FOR TRAINING It is important to identify the combination of skills that counselling staff and supervisors will need to support each other so that, together, the entire staff at a VCT, PPTCT or ART centre will be able to deliver high-quality services to their clients. Making sure that supervisors also receive counselling training as well as counselling supervision training is critical to maintain the quality of clinical services and to strengthen the management of the programme. Supervisors must see their roles as educative and supportive (as well as being able to provide appropriate challenges, where necessary), but not interrogative. Training for counsellors should be competency-based, bearing in mind the realities of the situation in the field. This means that the relevant competencies must be defined before training programmes are designed. Careful consideration must be given to the procedures that counsellors should follow and the skills they require. The most important method of training in any situation depends on the nature of the learning objectives. (The learning of facts requires different teaching methods from xiv

16 the learning of communication skills; local cultural factors; and the style of teaching that learners are familiar with and capable of using.) Example: Even though trainees may be most familiar with lectures, this method cannot be used to teach communication skills. The competencies identified with regard to training in counselling depend on communication skills. There will also be a need to develop attitudes and skills for coping with fear, anger and embarrassment. Learning objectives in these areas can be achieved only when the teaching methods are interactive and involve the trainees in practising communication skills and in expressing their feelings. Effective training of counsellors always has a closely supervised practical component. Therefore, counselling training programmes should be designed in such a way that ample opportunity is provided for this practical training in the field as well as in the classroom. 3.1 Group size The group size for classroom counselling training should not exceed 30 trainees. The smaller the group, the more quality time and opportunity are afforded for trainees to practise their skills. As a number of group activities require splitting the trainees into groups of threes, it is suggested that the number of trainees be divisible by three (see also Group discussions later in this section). 3.2 Interactive training strategies These modules use interactive training methodologies, allowing instruction, practice and feedback to take place as these are crucial to address the sensitive and confidential issues discussed during HIV pre- and post-test counselling. Each session of training involves one or more of the following strategies: Role-play exercises Group discussions Educational games (card game for risk assessment, the trust walk ) Case-based small group learning activities Brainstorming sessions Presentations A PowerPoint (PPT) presentation can be used to highlight key points. The duration of each presentation should not exceed 30 minutes. Trainers can promote interaction by: the use of individual/group exercise HOs that trainees complete encouraging questions from the group following the presentation xv

17 conducting group work to discuss and answer questions by assigning issues or tasks to small groups Visual aids Visual aids can be used to highlight oral presentations or points. For example, key points can be noted on the blackboard and questions for debate or discussion (and responses) can be written on the board. The use of the board in this way promotes discussion and interaction. Visual aids should be clear, readable and should not be filled with too many details. Rapporteur sessions Following group discussions, the trainer can develop a list of the points made, which can be used to summarize the presentation. Alternatively, the trainer can call upon a trainee to be a rapporteur to document a list of summary points that can be derived from brainstorming lessons learnt from the presentation. Role-plays Role-plays should be used to act out specific roles of identified people or to act out a scene. This is useful when practising skills such as counselling and to explore how people react to specific situations. The time limit for a role-play is minutes. (For more information on how to conduct role-plays see Annexure 2.) Role-plays have the following advantages: They allow for safe rehearsal of skills and activities, and provide practical preparation for genuine situations The trainees are able to experience activities and to relate theory to practice They allow for full expression and interpretation of concepts Some individuals may feel intimidated by role-playing. The trainer must be skilful in ensuring that they are relaxed and should: keep the role-play appropriate to the learning context, and emphasize that the characters are in role and that group observers are looking at the characters and their reactions, not the individual people enacting the role. Group discussions large group discussions These should be led by the trainer and involve the entire group. The advantages of such discussions include the following: The trainees are involved in problem-solving The trainees are active, which stimulates interest xvi

18 The learning process becomes more personal, requiring the trainer to provide feedback on individual opinions and ideas The trainer is able to evaluate the trainees understanding and absorption of material The trainees have an opportunity to share their acquired expertise and skills Large group discussions require a skilful trainer who: Asks questions or suggests topics, maintains objectivity and directs the discussion to keep it relevant to the learning objectives Stresses confidentiality Ensures that all group members have an equal opportunity to participate and that no one person (including the trainer!) dominates the discussion Perceives and responds to differences in the group, such as the skills level, education and comfort with the topic Is aware of cultural and gender issues Encourages trainees to answer questions and share expertise Is flexible if the group begins to explore other relevant issues Is respectful and non-judgmental of the trainees ideas and opinions to allow open expression of concerns Keeps to the time, leaving adequate periods for discussion Obtains feedback and responses from the group to provide evaluation mechanisms for the session Provides an appropriate balance of supportive and challenging facilitation in which to foster learning Group discussion small group discussions These are usually conducted in groups of four to six persons. The advantages of small group discussions include the following: Trainees have more opportunity to talk and are less likely to be embarrassed than in a large group The atmosphere is more conducive to a discussion of feelings Trainees gain self-confidence through sharing of information More ideas come from the group The trainer may also ask the group to appoint a facilitator and a rapporteur. Small group discussions and/or work with pairs should be followed by a large group discussion so that general conclusions can be drawn. The trainer does not lead the group, but must be skilful in structuring the discussions so that the stated objectives are accomplished. xvii

19 It is important to provide clear guidelines for group discussions, such as the ones below, at the beginning of the discussion. Which topics are to be discussed? Will the group draw conclusions or make decisions? Can opinions or feelings of the trainees be shared beyond the small group? Will the group be expected to report its discussions to the larger group? Working in pairs Working in pairs is effective when in-depth sharing or analysis of particularly personal or sensitive issues is required. Individuals may feel more free to disclose their attitudes and opinions with one trainee rather than within the larger group. Case studies Case studies are designed to give counselling trainees an understanding of the impact of HIV infection on the individual, and to enable them to deal with problems trainees may encounter in real-life settings. The trainers need to develop case studies that are specific to the local setting. Where included, case studies are introduced in the Session Plan for each individual submodule, some of these are followed by a discussion of key points pertaining to the case study. Case studies should be printed and provided to trainees as part of the activity. These case studies provide a detailed description of an event, different characters and settings. The case studies may be followed by a series of questions that will challenge the trainees to discuss the positive and negative aspects of the event. The advantages of case studies are that they allow an examination of a real or simulated problem that mirrors the outside world, and help trainers to develop confidence and problem-solving skills. The case studies prepared for use in the individual clinical risk assessment and HIV pre- test counselling sessions should NOT be included in the trainees' folders. They have been designed to be handed out to the trainees during the activities. (Refer to the session plan.) Trainees who role-play 'counsellors' in these activities should not see the cases before the commencement of the activities. This will ensure that the 'counsellor' gains experience in acquiring information from 'clients'. In 'real-life' situations, clients do not send all their details to the counsellor in advance; rather the counsellor uses counselling skills to gather information from the client. Conducting role-plays in this way ensures that training approximates reallife situations. xviii

20 4. USE OF RESOURCE PERSONS/EXTERNAL TRAINERS Using a range of resource persons or external trainers presents both advantages and disadvantages. Advantages include: Trainees have access to experts in their respective fields Trainees establish important linkages with external individuals and agencies that will assist them in their clinical work External presenters add variety to the programme of regular trainers Some disadvantages of using external trainers or guest speakers are as follows: Inadequately briefed speakers may not focus on the topic Speakers may present nonevidence-based or erroneous information Speakers may pitch their presentation inappropriately in terms of language used and target audience Some speakers may be uncomfortable with the use of more interactive learning methodologies Speakers may not adhere to the time frame provided Follow these guidelines to maximize the use of external trainers or guest speakers: Ensure that the speakers are adequately briefed, verbally as well as in writing, in terms of what is expected of them. Provide a guideline that specifies the content to be covered, the methodology to be used, the level and type of language, and the time frame. In addition, clearly describe the type of trainees they will be working with and the overall aims of the training programme Choose speakers who are known to be effective for your goals. Alternatively, groom them to attain the desired outcome The regular trainer should be present where possible when the external speaker makes their presentation. This ensures continuity in case an issue arises. In addition, regular trainers are also able to observe and provide useful feedback to the resource persons/guest speaker Always ensure that external trainers/guest speakers are given a feedback from both the organization and that based on trainee evaluations to continue improving their sessions 5. ASSESSING TRAINEES KNOWLEDGE LEVELS Before beginning the training, assess the trainees knowledge of HIV and the counselling process with a pre-training knowledge questionnaire (see section evaluation forms ). This information can be used to fine-tune the training to the knowledge level of the trainees. At the end of the training, the same questionnaire can be administered to determine how much knowledge and skills the trainees have gained and how effective the training has been. For trainees who are not familiar with questionnaires or are illiterate, use focus groups to assess the knowledge levels. xix

21 6. ASSESSING TRAINING QUALITY It is important for the training coordinator to assess the quality and effectiveness of the HIV counselling training. This feedback will help in conducting future trainings, improving sessions and identifying appropriate resource persons for trainings. Forms for evaluating the overall training and for evaluating the trainers is included in section evaluation forms. 7. SUMMARY OF KEY CONSIDERATIONS FOR SUCCESSFUL TRAININGS 1. Ensure that the Training Materials Outline is close at hand for easy reference. This will prevent usage of wrong HOs or case studies for accompanying presentations. 2. Encourage all trainees to be present for the ENTIRE training. It is suggested that certificates may not be given to trainees who do not attend the entire course. In the event of an emergency, in which case a trainee cannot complete the course, the trainer should negotiate with the trainee to complete the missed segments at a future course and then hand over the certificate. Note that this strategy is critical to ensuring the quality of counselling. If a trainee misses any segments of the training programme, the trainer should brief the trainee about the missed segments when they return. This will ensure that they do not put their role-playing partner to a disadvantage when they do role-plays or other activities. 3. Ensure that the training sessions commence on time. Request all trainees to arrive in time. Inform them that there is much material to be covered each day, and it can be very disruptive to have trainees arrive late at the training sessions. 4. Discussion of sensitive issues. Discussions on sex, sexuality, HIV and STIs can be difficult. It is important for trainers to make a statement about this potential discomfort to trainees at the commencement of the course and invite the course trainees to discuss their concerns with the trainers on an individual basis. The training group must respect a trainee s decision to pass on a specific question or activity. 5. Encourage trainees to use the question box. Questions on sensitive issues can be written down on a piece of paper and dropped in a question box. The questions should be drawn out at the end of each day and discussed during the questionand-answer session before the close of the day. 6. Maintain confidentiality at all times. This should be the case, especially if counsellor trainees refer to their own personal experiences or those of their clients. Trainers are urged to ask all trainees to agree to maintain the confidentiality of all fellow trainees. 7. Encourage trainees to respect individual differences. Trainees frequently come from different ethnic and cultural groups, and their lifestyles, beliefs, personal experiences and expertise may differ. 8. Encourage trainees to listen carefully and with empathy, and respect each xx

22 other s contributions, opinions and experiences. Explain that it is important in the training, and as professionals, to practice active listening by allowing each other to share their own experiences and opinions with the group. 9. Create a congenial environment in which each trainee feels comfortable asking questions. Trainees need to be able to ask questions about what they do not understand. Again, the question box can be a useful tool. 10. Due to the constant change in transmission patterns, treatment, perceptions, attitudes, etc., trainees should be reminded to consistently update their information regarding HIV/AIDS. With the VCT training programme in the 12-day schedule, latest information, resources and treatments available, we can provide better services to our clients. 11. Ensure you get the right trainees. Establish clear criteria for participation and communicate these criteria not only to the trainees but also to their employers. 12. Ensure that an evaluation form is distributed to trainees at the end of the training. These need to be completed by the trainees and placed in the evaluation box to be collected by the trainer once all the forms have been submitted. 13. Consider the advantages of providing meals to the trainees. The training course follows a very strict timetable. It is therefore essential that sessions commence and conclude according to the schedule. The provision of morning tea, lunch and afternoon tea at the site of training has the advantage of ensuring that all trainees promptly return from breaks. It also creates flexibility within the programme should there be a need to shorten breaks or complete work within a break. Further, it contributes to the general satisfaction of trainees and allows them to focus on the study material to a greater degree. xxi

23 Module 1 Module 1 Submodule 1 Overview and epidemiological issues for VCT Handout Submodule 1: Overview and epidemiological issues for voluntary counselling and testing Session objectives At the end of the training session, trainees will be able to: Demonstrate improved knowledge of the natural history of HIV/AIDS Understand the HIV/AIDS scenario in India Appreciate the role of voluntary counselling and testing centres (VCTC) Discuss the current and proposed scaling up of HIV/AIDS care including antiretroviral (ARV) treatment WHAT IS HIV/AIDS? HIV is the acronym for human immunodeficiency virus. A person infected with HIV is medically known as an HIV-positive person. AIDS stands for acquired immune deficiency syndrome. Acquired means neither innate nor inherited, but transmitted from one infected person to another Immune is the body s system of defence Deficiency means not functioning to the appropriate degree Syndrome means a group of signs and symptoms AIDS is the advanced stage of HIV infection. It is a disabling and incurable infection caused by HIV. As HIV progressively destroys the immune system, most people, particularly in resource-constrained settings, die within a few years of the appearance of the first signs of AIDS. Only a blood test can establish a person s HIV status. However, this does not mean that every person who undergoes the test has AIDS. In healthy individuals, infections are kept away by a variety of defenders in the body. These defenders constitute the immune system of our body. Unknown to us, the immune system is at work every day, recognizing foreign bodies (e.g. bacteria, virus, etc.) and fighting them by producing specific chemicals called antibodies which neutralize foreign bodies. Each disease stimulates the production of antibodies specific to it. The detection of these antibodies in blood samples is therefore used to determine past or present infection. Since HIV causes damage to the immune system, the body cannot be protected against other infections, some of which then become the direct cause of death. HANDOUT 1

24 Module 1 Submodule 1 Overview and epidemiological issues for VCT What is the immune system? Immune system defends the body White blood cells (WBCs) are the most important part of this immune system WBCs fight and destroy bacteria, fungi and viruses that enter the body How does HIV weaken the immune system? HIV enters the body WBCs are attacked by HIV HIV multiplies inside WBCs and infects other WBCs Infected WBCs are eventually destroyed Leads to a reduction in the number of WBCs Ultimately leads to greatly reduced immunity Cellular targets of HIV infection Main targets: CD4+ T lymphocytes monocytes and macrophages HIV transfers RNA into human cells: integrates into the genetic material replicates Production of antibodies Fig. 1.1 HIV life-cycle: Post-integration 2 HANDOUT

25 Module 1 Submodule 1 Overview and epidemiological issues for VCT Genesis of HIV After entering a person s body, HIV infects cells and starts to replicate in them (essentially CD4 T cells and macrophages). The virus induces the body s immune system to produce antibodies specific to HIV. The period between the acquisition of infection and production of detectable HIV antibodies is called the window period (Fig 1.2). The window period can last for 2 12 weeks. During this period, the person is highly infectious but may not test positive on common HIV antibody tests. Up to 30% 50% of people have a recognizable acute illness at the time of infection characterized by fever, lymphadenopathy (enlargement of the lymph nodes), night sweats, skin rash, headache and cough. TB: tuberculosis OHL: oral hairy cell leukoplakia OC: oral candidiasis PPE: papular pruritic eruption PCP: Pneumocystis carinii pneumonia CM: cryptococcal meningitis CMV: cytomegalovirus retinitis MAC: Mycobacterium avium infection HZV: herpes zoster virus Fig. 1.2 Natural course of HIV infection and common diseases HIV-infected people may remain asymptomatic for as long as 10 or more years. An HIV-infected person may take from 6 months to 10 years to develop AIDS; on an average, 50% of those infected take 8 years to progress to AIDS. People in this phase potentially play an important role in the transmission of HIV as they remain infectious but can be identified only by screening their serum for HIV antibodies. After a period of time, varying from one individual to another, viral replication resumes and is accompanied by the destruction of CD4 lymphocytes and other immune cells, resulting in a progressive immunodeficiency syndrome. The progression depends on the type of infection and different factors that may cause faster progression, such as age less than five years or over 40 years, other infections (opportunistic infections) and possibly heredity (genetic) factors. Various infections, diseases and malignancies occur among HIV-infected individuals. These are correlated with the degree of immune suppression and include tuberculosis (TB), oral hairy cell leukoplakia, oral candidiasis, papular pruritic eruption, Pneumocystis carinii pneumonia, cryptococcal meningitis, cytomegalovirus (CMV) retinitis and Mycobacterium avium infection, Kaposi sarcoma, etc. HANDOUT 3

26 Module 1 Submodule 1 Overview and epidemiological issues for VCT Clinical staging In 1989, WHO proposed an interim system with four different clinical stages for HIV infection in adults and adolescents. In addition to signs, symptoms and diseases, physical activity was added to the framework using performance scales, a modification of the Eastern Co-operative Oncology Group score. Patients are classified according to the presence of the clinical condition, or performance score, belonging to the highest stage. The staging system is hierarchic: once a stage is reached, the patient cannot revert to a lower stage, he/she can only progress to a higher one. A laboratory axis measuring CD4 count was introduced in 1990 (Tables 1.1 and 1.2). The rate of progression to AIDS is influenced by the plasma viral load (the amount of virus in the body) and CD4 T cell count. The higher the viral load and the lower the CD4 count, the higher the chances of progression to AIDS and death. Death may be due to advanced opportunistic infections (OIs) and/or malignant diseases. Table 1.1 WHO clinical staging of HIV/AIDS for adults and adolescents with confirmed HIV infection, January 2006 Primary HIV infection Asymptomatic Acute retroviral syndrome Clinical stage 1 Asymptomatic Persistent generalized lymphadenopathy Clinical stage 2 Moderate unexplained weight loss (<10% of presumed or measured body weight) Recurrent respiratory tract infections (sinusitis, tonsillitis, bronchitis, otitis media, pharyngitis) Herpes zoster Angular cheilitis Recurrent oral ulceration Papular pruritic eruptions Seborrhoeic dermatitis Fungal nail infections Clinical stage 3 Unexplained severe weight loss (>10% of presumed or measured body weight) Unexplained chronic diarrhoea for longer than one month Unexplained persistent fever (intermittent or constant for longer than one month) Persistent oral candida Oral hairy leukoplakia Pulmonary TB Severe presumed bacterial infections (e.g. pneumonia, empyema, pyomyositis, bone or joint infection, meningitis, bacteraemia, excluding pneumonia) Acute necrotizing ulcerative stomatitis, gingivitis or periodontitis Unexplained anaemia (<8 g/dl ), neutropenia (<500/mm 3 ) and/or chronic thrombocytopenia (<50 000/ mm 3 ) (contd) 4 HANDOUT

27 Module 1 Submodule 1 Overview and epidemiological issues for VCT Clinical stage 4 HIV wasting syndrome Pneumocystis pneumonia Recurrent severe presumed bacterial pneumonia Chronic herpes simplex infection (orolabial, genital or anorectal of more than one monthês duration or visceral at any site) Oesophageal candidiasis (or candida of trachea, bronchi or lungs) Extrapulmonary TB Kaposi sarcoma Cytomegalovirus infection (retinitis or infection of other organs) Central nervous system toxoplasmosis HIV encephalopathy Extrapulmonary cryptococcosis including meningitis Disseminated non-tuberculous mycobacteria infection Progressive multifocal leukoencephalopathy Chronic cryptosporidiosis Chronic isosporiasis Disseminated mycosis (extrapulmonary histoplasmosis, coccidiomycosis, penicilliosis) Recurrent septicaemia (including non-typhoidal salmonella) Lymphoma (cerebral or B cell non-hodgkin) Invasive cervical carcinoma Atypical disseminated leishmaniasis Table 1.2 Revised WHO clinical staging of HIV/AIDS for infants and children with confirmed HIV infection, January 2006 Primary HIV infection Asymptomatic Acute retroviral syndrome Clinical Stage 1 Asymptomatic Persistent generalized lymphadenopathy Clinical Stage 2 Unexplained persistent hepatosplenomegaly Papular pruritic eruptions Extensive wart virus infection Extensive molluscum contagiosum Recurrent oral ulcerations Unexplained persistent parotid enlargement Lineal gingival erythema Herpes zoster Recurrent or chronic respiratory tract infections (otitis media, otorrhoea, sinusitis, tonsillitis) Fungal nail infections (contd) HANDOUT 5

28 Module 1 Submodule 1 Overview and epidemiological issues for VCT Clinical Stage 3 Moderate unexplained malnutrition not adequately responding to standard therapy Unexplained persistent diarrhoea (14 days or more) Unexplained persistent fever (above 37.5 intermittent or constant, for longer than one month) Persistent oral candida (outside first 6 8 weeks of life) Oral hairy leukoplakia Acute necrotizing ulcerative gingivitis/periodontitis TB lymphadenitis Pulmonary tuberculosis Severe recurrent presumed bacterial pneumonia Symptomatic lymphoid interstitial pneumonitis Chronic HIV-associated lung disease including brochiectasis Unexplained anaemia (<8 g/dl ), neutropenia (<500/mm 3 ) or chronic thrombocytopenia (<50 000/ mm 3 ) HIV-associated cardiomyopathy or HIV-associated nephropathy Clinical Stage 4 Unexplained severe wasting, stunting or severe malnutrition not responding to standard therapy Pneumocystis pneumonia Recurrent severe presumed bacterial infections (e.g. empyema, pyomyositis, bone or joint infection, meningitis, but excluding pneumonia) Chronic herpes simplex infection (orolabial or cutaneous of more than one monthês duration or visceral at any site) Extrapulmonary tuberculosis Kaposi sarcoma Oesophageal candidiasis (or candida of trachea, bronchi or lungs) Central nervous system toxoplasmosis (outside the neonatal period) HIV encephalopathy CMV retinitis or CMV infection affecting another organ, with onset at age over 1 month. Extrapulmonary cryptococcosis including meningitis Disseminated endemic mycosis (extrapulmonary histoplasmosis, coccidiomycosis, penicilliosis) Chronic cryptosporidiosis Chronic isosporiasis Disseminated non-tuberculous mycobacteria infection Acquired HIV associated rectal fistula Cerebral or B cell non-hodgkin lymphoma Progressive multifocal leukoencephalopathy Note: The WHO guidelines on clinical staging of HIV/AIDS are under constant review and are revised as required. For the most updated version, kindly consult the WHO website: HIV/AIDS CARE AND TREATMENT Since the time AIDS was first recognized 20 years back, remarkable progress has been made in improving both the quality of life and longevity of HIV-infected persons in the industrialized world. During the first decade of the epidemic, this improvement occurred because of better recognition of the progression of opportunistic disease, advanced therapy for acute and chronic complications, and introduction of chemoprophylaxis against key opportunistic pathogens. The second decade of the epidemic has witnessed extraordinary progress in developing combined antiretroviral 6 HANDOUT

29 Module 1 Submodule 1 Overview and epidemiological issues for VCT therapy (ART) as well as continuing developments in preventing and treating OIs. ART has reduced the incidence of OIs and extended life substantially. Opportunistic infections The three most commonly reported OIs in the South-East Asia Region are TB, Pneumocystis carinii pneumonia and extrapulmonary cryptococcosis (usually meningitis). The prevention and treatment of OIs delays the progression of HIV infection. TB and HIV HIV infection fuels the TB epidemic in several ways. HIV infection promotes progression to active TB in people with recently acquired as well as latent TB. HIV infection is the most powerful known risk factor for reactivation of latent TB infection to active disease manifestation. The annual risk of developing TB in persons living with HIV/AIDS (PLHA) who are co-infected with Mycobacterium tuberculosis ranges from 5% to 15%. Up to 60% of PLHA develop active TB during their lifetime compared to about 10% of HIV-negative individuals. HIV infection increases the rate of recurrent TB, which may be due to either endogenous reactivation (true relapse) or exogenous re-infection. Antiretroviral therapy ARV refers to a substance that stops or inhibits the replication of a retrovirus such as HIV. The recent introduction of combination ART has reduced HIV/AIDS morbidity and mortality by 60% 90%, and improved the quality and duration of life of PLHA. The aim of ART in general is to prolong and improve the quality of life by maintaining maximal suppression of HIV replication for as long as possible. The reduction in plasma viraemia achieved with ART accounts for much of the clinical benefits associated with ART. The choice of regimen depends on a number of factors. These What is comprehensive HIV/AIDS care? Clinical and nursing care Psychological support and counselling Economic and employment support Legal assistance Care and support for orphans and widows Training on care and support for caregivers Source: Planning and implementing HIV/AIDS care programmes: A step-by-step approach. WHO-SEARO, 1998/2002. HANDOUT 7

30 Module 1 Submodule 1 Overview and epidemiological issues for VCT include, among others, the cost of therapy, availability and medium/long-term affordability, convenience and likelihood of adherence, regimen potency, tolerability and adverse effect profile, possible drug interactions and potential for alternate treatment options in the event that the initial drug regimen fails. ART has been shown to benefit both adults and children. ART with single or dual drug regimen is not recommended due to the rapid emergence of drug resistance. Monotherapy with zidovudine or with nevirapine is recommended only for the prevention of parent-to-child transmission (PPTCT) of HIV. The use of a protease inhibitor with two nucleoside reverse transcriptase inhibitors (NRTI) has shown potent and durable suppression of viral replication. A combination of nonnucleoside reverse transcriptase inhibitors (NNRTI) with two NRTI also produces viral suppression and immunological improvements that are at least comparable to those seen in combinations which include protease inhibitors. Currently, several regimens with acceptable antiviral potency are available. These regimens combine three or four drugs. Two NRTI generally form the backbone of most combinations. WHO guidelines on the use of ART for resource-constrained countries were published in 2002, and have included information regarding when to start ART and what regimens to follow. In 2004, NACO published the programme implementation guidelines for a phased scale-up of access to ART for PLHA. ART is a life-long commitment. Adherence to treatment is the most important factor to suppress HIV replication and to avoid the emergence of drug resistance. HIV/AIDS care continuum The management of OIs and ART cannot be seen in isolation. HIV-infected patients, including those with active TB, should benefit from additional care needs, including clinical and nursing care in particular. For the prevention and treatment of OIs, ongoing psychosocial support and counselling, financial and employment support, assistance for housing and living in enabling environment, legal assistance, and care and support for orphans should be available. Experiences from several countries have demonstrated that a continuum of care from hospital to home is optimal for the care and support of those affected. WHO is promoting the continuum of care concepts, which includes an adequate referral and collaborative care network between hospitals and the community and to the home (Fig. 1.3). Counselling and ART For effective ART, it is absolutely critical that patients are well prepared for lifelong treatment and understand the implications of taking prescribed medicines regularly 8 HANDOUT

31 Module 1 Submodule 1 Overview and epidemiological issues for VCT Fig. 1.3 HIV/AIDS continuum of care and at the same time of the day. Some drugs require special instructions, e.g. to be taken before or after a meal and with a certain amount of fluid. The counsellor plays an important role in assessing readiness for ART and can effectively contribute to treatment, literacy and adherence. All ARV medicines have side-effects. The counsellor should refer the client to a physician with experience in ART who can decide whether a treatment should continue or be interrupted. HIV SITUATION IN INDIA Country overview It is estimated that the number of PLHA in India by the end of December 2004 was million, second only to South Africa. The first case of HIV infection in India was reported from Madras (now Chennai) in Since then, HIV has spread to all the states in India. HIV prevalence is about 0.9% in the age group years, which makes India a low-prevalence country. However, in view of the large population of the country, a mere 0.1% increase in the prevalence rate would increase the numbers living with HIV by over half a million. HIV is known to be concentrated among the poor, marginalized sections of society, including commercial sex workers (CSWs), injecting drug users (IDUs), men who have sex with men (MSM) and migrant population. Significantly, the epidemic is moving from high-risk groups to the general population. The number of women infected is steadily rising one in every four cases reported is a woman. HANDOUT 9

32 Module 1 Submodule 1 Overview and epidemiological issues for VCT There is not one single HIV epidemic in India. A number of distinct epidemics often coexist, sometimes within the same state, with different vulnerabilities, stage of maturity and impact. Currently, the transmission of HIV/AIDS in India is predominantly through the heterosexual route (86%). However, in north-eastern India, the epidemic is spreading mainly through IDU. Some of the key factors fuelling the spread of HIV in India are commercial sex, high prevalence of sexually transmitted infections (STIs), large-scale migration of workers from rural to urban areas, and low levels of literacy particularly among women. The overall mean HIV prevalence was 0.89% and 5.39% among antenatal mothers with sexually transmitted infections (STIs) (2004). The stigmatization and discrimination of PLHA remain a major challenge to prevention and care efforts in the country. Awareness about HIV, however, is on the increase, particularly in recent years. HIV TREND ANALYSIS FOR INDIAN STATES India has been divided into high-prevalence states comprising Tamil Nadu, Karnataka, Maharashtra, Andhra Pradesh, Manipur and Nagaland; those with moderate prevalence, namely Goa, Gujarat and Pondicherry. The remaining states are considered low-prevalence or highly vulnerable states. HIV sentinel surveillance An annual HIV sentinel surveillance has been institutionalized over the years to monitor trends of HIV infection in specific high-risk as well as low-risk groups. Highrisk segments of population include clients attending STI clinics, MSM centres and drug de-addiction centres. Low-risk segments of the population include mothers attending antenatal clinics; in fact, this category has been taken as proxy for the general population in HIV sentinel surveillance surveys. Sentinel sites are located in precisely each of the categories of clinics cited above, so that samples are accessed from both high-risk as well as low-risk groups at regular intervals in an unlinked, anonymous procedure. Sentinel surveillance for HIV was first organized at 55 sentinel sites in This was expanded to 180 sentinel sites across the country in 1998 and the number keeps increasing each year (Table 1.3). A break-up of these sentinel surveillance sites in the year 2004 is given in Table HANDOUT

33 Module 1 Submodule 1 Overview and epidemiological issues for VCT Table 1.3 HIV sentinel surveillance sites in India Year No. of sites Table 1.4 Break-up of HIV sentinel surveillance sites in India in 2004 Category of site No. of sites Sexually transmitted disease (STI) 166 Antenatal care (ANC) clinics (rural) Commercial sex worker (FSW) 42 Injecting drug users (IDU) 13 Men who have sex with men (MSM) 3 Tuberculosis (TB) 7 TI sites (FSW, MSM, IDU) 84 Source: NACO Annual Report ; (up to July 2004) Estimates of PLHA at the end of 2004 During 2002, the sentinel surveillance round was conducted from 1 August to 15 November 2004 in 659 sentinel sites. For the analysis of primary data from these sentinel sites, the following steps were taken to ensure professional peer review and independent assessment. (i) The Indian Council of Medical Research (ICMR) was requested to participate in the exercise. (ii) A core group of experts was set up, including eminent epidemiologists and biostatisticians (national and international). Representatives of WHO and UNAIDS were members of this group. ICMR and the National AIDS Control Organization (NACO) convened an expert group meeting to review the procedures; the data was used for estimation. (iii) For the first time, it was decided that India should present a range instead of a point estimate. This is more scientific and reflects the situation in the field better. It helps planners identify specific interventions to address those living with HIV. As per the recommendations of this expert group, the estimates for the year 2004 have been worked out as million HIV-infected individuals in the adult population (15 49 years of age in India) at the upper end of the range and 4.58 million at the lower end of the range. HANDOUT 11

34 Module 1 Submodule 1 Overview and epidemiological issues for VCT Table 1.5 Estimates of HIV infection for the year (in million) Year Estimate of HIV infection (in million) The trends across the country show that there is no galloping HIV epidemic in India as a whole, as no evidence of upsurge in HIV prevalence has been observed in the country. However, there are subnational epidemics in various parts of the country with the evidence of high prevalence of HIV among both STI clinic attendees and antenatal clinic attendees. The HIV prevalence has seen a significantly increasing trend among STI clinic attendees in 16 sites and among antenatal clinic attendees in seven sites located in Andhra Pradesh, Maharashtra, Tamil Nadu, Gujarat, Pondicherry, Assam, Bihar, Chhattisgarh, Delhi, Haryana, Himachal Pradesh, Kerala, Orissa, Goa, and Manipur, etc. India continues to be in the category of low-prevalence countries with an overall prevalence rate of less than 1%. (Source: NACO website HIV prevalence in states/union territories (UTs) Based on the HIV sentinel surveillance data collected from 1998 to 2004, the states and Union Territories of India fall into three categories. High-prevalence states Maharashtra, Tamil Nadu and Manipur have reported the highest rates of HIV prevalence in India. Andhra Pradesh, Karnataka and Nagaland have also registered a rapid rise in HIV infections. These six states fall into the high-prevalence category because the HIV prevalence rates exceed 5% among high-risk groups and exceed 1% among antenatal women. In these states, 92 districts have been identified as high-prevalence districts based on the consistently high prevalence rates of HIV detected by the three most recent HIV sentinel surveillance data. Moderate-prevalence states Gujarat, Goa and Pondicherry, which share geographical borders with the highprevalence states, report an HIV prevalence exceeding 5% among high-risk groups but less than 1% among antenatal women. 12 HANDOUT

35 Module 1 Submodule 1 Overview and epidemiological issues for VCT Seven districts in these states have been identified as high-prevalence districts based on the consistently high prevalence rates of HIV detected during the last three rounds of the three most recent HIV sentinel surveillance surveys. Low-prevalence highly vulnerable states Apart from the six high-prevalence and three moderate-prevalence states, the remaining India states and Union Territories fall into the low-prevalence category because the HIV prevalence rate is less than 5% in high-risk groups and less than 1% in antenatal women. Based on the consistently high prevalence of HIV inferred from the HIV sentinel surveillance data of the last three rounds, 12 districts in India have been identified as high-prevalence districts and targeted for intensive programme action. A total of 111 districts in the country have been classified as high prevalence for HIV (NACO, December 2004). AIDS case reporting National Behavioural Surveillance Survey NACO has a system of collating data with respect to cases of full-blown AIDS detected through the public health system. Table 1.6 indicates the state-wise figures of AIDS cases reported till July The second phase of the National AIDS Control Programme (NACP) attaches great importance to concurrent monitoring and evaluation of programme activities to obtain continuous critical information on the course of epidemic, and help NACO and State AIDS Control Societies (SACS) make decisions and take corrective measures as and when required. The National Behavioural Surveillance Survey (BSS), conducted by NACO in 2001 as a baseline and also to be conducted for midline and final assessment of the NACP, was identified as one of the tools for effective planning, monitoring and evaluation. HIV being a behaviour-related disease, the survey seeks to assess the present state of awareness, knowledge and attitude, and track behavioural changes with regard to STIs and HIV/AIDS which could influence the course of the epidemic. The baseline BSS remains one of the biggest surveys ever carried out in the world, especially among the general population. It was conducted among the general population, female sex workers (FSWs), MSM, IDUs and clients of female CSWs. Respondents were stratified by gender and place of residence (rural/urban) for obtaining representative coverage in the general population. The survey was conducted among the following groups: HANDOUT 13

36 Module 1 Submodule 1 Overview and epidemiological issues for VCT Table 1.6 National AIDS Control Programme, India: AIDS cases in India (Reported to NACO as on 31 July 2005) S. No. State/UT AIDS cases 1 Andhra Pradesh Assam Arunachal Pradesh 0 4 Andaman and Nicobar Islands 33 5 Bihar Chhattisgarh 0 7 Chandigarh (UT) Delhi Daman & Diu 1 10 Dadra & Nagar Haveli 0 11 Goa Gujarat Haryana Himachal Pradesh Jharkhand 0 16 Jammu and Kashmir 2 17 Karnataka Kerala Lakshadweep 0 20 Madhya Pradesh Maharashtra Orissa Nagaland Manipur Mizoram Meghalaya 8 27 Pondicherry Punjab Rajasthan Sikkim 8 31 Tamil Nadu Tripura 5 33 Uttranchal 0 34 Uttar Pradesh West Bengal Ahmedabad Muncipal Corporation area Chennai Muncipal Corporation area 0 38 Mumbai Muncipal Corporation area 7484 Total ,182 respondents years of age in the general population in all the 35 states and UTs female CSWs and 5,684 clients of female CSWs in 32 states and major UTs MSM in the five metros (Bangalore, Chennai, Delhi, Kolkata and Mumbai) IDUs in Chennai, Delhi, Kolkata, Manipur and Mumbai. 14 HANDOUT

37 Module 1 Submodule 1 Overview and epidemiological issues for VCT The salient findings of the baseline BSS among the general population were as follows: 76.1% had heard of HIV/AIDS (males: 82.4% and females: 70%). More than 75% of the interviewed respondents were aware that HIV/AIDS is transmitted through sexual contact. 72.5% were aware that HIV/AIDS can be transmitted through blood transfusion. 77.6% of males and 64.9% of females were aware that HIV/AIDS can be transmitted through sharing needles. 54.4% of the respondents were aware that HIV/AIDS could be transmitted through breastfeeding. More than 75% of the respondents in Delhi, Goa, Himachal Pradesh, Kerala, Manipur and Punjab were aware of the benefits of consistently using a condom in the prevention of transmission of HIV/AIDS. 57% of the respondents were aware that transmission of HIV/AIDS can be prevented by having one faithful and uninfected sexual partner. 71.2% were aware that sexual abstinence helped in the prevention of transmission of HIV/AIDS. Less than 25% of respondents knew that HIV/AIDS cannot be transmitted through mosquito bites or by sharing a meal with an infected person. Less than one third of all respondents had heard of STIs. Awareness of the link between STIs and HIV was low in the entire country (20.7%). A wide variation in casual sex was observed between states and significant gender differences were reported in casual sex. 8.6% of males compared to 1.7% of females reported casual sex in a one-year recall period. The median age at first sex was 21 years for males and 18 years for females in the entire country. 51.2% of males reported using condoms during the last sexual intercourse with nonregular partners as against 39.8% of females. Television was the most popular medium for receiving information on HIV/AIDS in the general population in most states The salient findings of the BSS among the groups perceived to be at a higher risk of infection were: Brothel-based female CSWs are more vulnerable to HIV infection compared to their nonbrothel-based peers. Brothel-based CSWs were less literate, were exposed to sex much earlier in life and were four times more likely to have first sold sex before they attained the age of 15 years. Brothel-based CSWs had to entertain 1.5 times more clients compared to nonbrothel-based CSWs in a week s recall. In terms of practices and exposure to HIV control interventions, brothel-based HANDOUT 15

38 Module 1 Submodule 1 Overview and epidemiological issues for VCT CSWs were significantly more advantaged. A significant proportion of MSM in India are bisexual. Cumulative data show that 30.9% had sex with female partners in a six-month recall period while 36% reported sex with commercial male partners during a month s recall. The BSS has given invaluable insights into the behavioural patterns that influence the spread of the HIV epidemic. As the details are available for both the national and state levels, these data are very valuable for planning activities at both levels. The next round of BSS to determine the midline data for NACP is due and a useful comparison will be available to gauge the impact of the various initiatives taken under the NACP. Mapping to identify numbers and locations of high-risk groups While the BSS provides data on the behavioural aspects of high-risk groups, it is important to know the numbers, sites, locations and pockets associated with these high-risk groups. Mapping exercises in each state will provide exactly these details for evidence-based planning of interventions targeting these groups. 16 HANDOUT

39 Module 1 Module 1 Submodule 2 Introduction to HIV testing Handout Submodule 2: Introduction to HIV testing Session objectives At the end of the training session, trainees will be able to: Define laboratory diagnosis of HIV infection Identify the benefits and common characteristics of different types of HIV test kits Discuss the meaning of confidential and anonymous testing Define the concepts of confidentiality and informed consent Discuss the meaning and interpretation of test results Understand the WHO rapid testing algorithm and strategy for VCT sites LABORATORY DIAGNOSIS OF HIV INFECTION The diagnosis of HIV infection is based on the detection of HIV antibodies in the blood of infected persons. Types of HIV antibody assays A variety of HIV antibody assays using different methodologies are available. These assays can be broadly classified into three groups: 1. Enzyme-linked immunosorbent assay (ELISA); 2. Western blot assay; and 3. Rapid tests. Most current HIV antibody tests are capable of detecting antibodies to both HIV-1 and HIV-2. ELISA HIV antibodies in the test serum are detected using an antibody sandwich capture technique. Essentially, HIV antibodies, if present in the test serum, are sandwiched between HIV antigens. This is fixed to the test well, and to enzyme-conjugated antibodies that are added to the test well following addition of the test serum. The test well is washed thoroughly to remove any unbound enzyme. A colour reagent is then added to the well. Any bound enzyme will catalyse a change in colour in this reagent. The presence of HIV antibodies is thus inferred from the change in colour. HANDOUT 17

40 Module 1 Submodule 2 Introduction to HIV testing Fig. 1.4 Enzyme-linked immunosorbent assay Fig. 1.5 ELISA plate Some of the more recent ELISAs have the capacity to detect both HIV antibodies and HIV antigen. Western blot assay HIV antibodies in the test serum are detected by their reacting to a variety of viral proteins. The viral proteins are initially separated into bands according to their molecular weight on an electrophoresis gel. These proteins are then transferred or blotted on to a nitrocellulose paper. The paper is then incubated with the patient s serum. HIV antibodies to specific HIV proteins bind to the nitrocellulose paper at precisely the point to which the target protein migrated. Bound antibodies are detected by colorimetric techniques. Rapid tests A variety of rapid tests are available which employ a variety of techniques including particle agglutination; lateral flow membrane; through flow membrane, and comb or dipstick-based assay systems. Rapid tests are most appropriate for smaller health institutions where only a few samples are processed each day. Rapid tests are quicker and do not require specialized equipment. Most rapid tests are dot-blot immunoassays or agglutination assays requiring no instrumentation or specialized training and take minutes to perform. Most have sensitivities and specificities of over 99% and 98%, respectively. Only WHO-recommended tests should be used to ensure a high level of sensitivity and specificity. The major advantage of the rapid HIV test is that it allows results to be given on the same day as testing thus reducing the number of visits made by the client. There is also an increased likelihood of clients receiving test results as opposed to the numbers who may not return when same day testing regimes are not used. Rapid tests do not 18 HANDOUT

41 Module 1 Submodule 2 Introduction to HIV testing Fig. 1.6 Western blot assay require batching, or specialized equipment and trained personnel. A further benefit is that subjects are more likely to receive their results from the same health-care worker who performed pre-test counselling. Box 1.1 contains a summary of the characteristics of rapid HIV tests recommended for use in HIV testing and counselling programmes. Requirements for different antibody assays There are a variety of situations where HIV antibody assays are used. The choice of the test used is determined by the following three factors: The objective of the test The sensitivity and specificity of the test The prevalence of HIV in the population being tested Three main objectives for which HIV antibody assays are used are: Transfusion and transplant safety (for the safety of the recipient) Surveillance (for estimating disease burden in the population) and Diagnosis of HIV infection (this includes VCT and clinical care for the knowledge of the individual). It should be stated that the WHO policy is to prevent the blood transfusion service from becoming a de facto HIV diagnosis service in the absence of effective clinical testing services. The tests (or algorithms) used by transfusion services may not necessarily be the best test for HIV clinical diagnosis (see below). Test characteristics Biological assays are not accurate 100% of the time. Each biological assay has the potential to give false-positive or false-negative results. The accuracy of a certain assay to distinguish between HIV-infected and uninfected subjects is described by HANDOUT 19

42 Module 1 Submodule 2 Introduction to HIV testing Summary of characteristics of rapid HIV tests for testing and counselling programmes Accuracy High sensitivity >99% High specificity >99% High reproducibility* >98% Specimen type Preferably for use on whole blood (finger-prick samples) for ease of collection and to avoid the need for centrifugation Little laboratory equipment required No constant electricity or water supply required Easy to perform Little technical training required Few steps Easy to interpret Visual interpretation of results, usually without equipment Stable end-reading point Rapid (<30 minutes) Easy to store Storage at room temperature for several weeks (provided there are no significant temperature fluctuations) Shelf-life 12 months or longer Number of tests performed Suitable for individual and small volume testing, e.g samples per day Minimal waste and waste disposal Low cost (mostly <US$ 1.0 for the initial screening) *Reproducibility, expressed as a percentage, is calculated by dividing the number of concordant results by the total number of samples retested. Source: World Health Organization. Rapid HIV tests: Guidelines for use in HIV testing and counseling services in resource-constrained settings; its sensitivity, specificity and predictive value. A working knowledge of these concepts is important while giving test results or developing testing programmes. Sensitivity This describes the capacity of a test to accurately define a true case. The probability of a highly sensitive test giving a false-negative result is very low. Highly sensitive tests are used when there is an absolute need to minimize false-negative results such as in the case of testing blood for a transfusion service. 20 HANDOUT

43 Specificity Module 1 Submodule 2 Introduction to HIV testing This describes the capacity of a test to accurately define a true non-case. A highly specific test will give very few false-positive results. Highly specific tests are used when there is an absolute need to minimize false-positive results, such as in the case of clinically diagnosing an individual with HIV infection. Predictive value The probability that a particular assay will accurately determine the infection status of an individual varies with the prevalence of the infection within a population. False-negative results will be less common in low-prevalence populations and more common in high-prevalence countries whereas false-positive results will be more common in low-prevalence populations and less common in high-prevalence countries. In other words, in high-prevalence populations, a person who tests positive has a greater likelihood of actually being truly infected. Conversely, in low-prevalence countries, a person who tests negative is more likely to be truly negative. These relationships are mathematically expressed in the Table 1.7. The determinants of predictive values are the specificity and sensitivity of the test and the prevalence of HIV in the population concerned. Even with a very accurate test (high sensitivity and high specificity), in settings with a low HIV prevalence (e.g. <1%) the positive predictive value of a test may not be sufficiently high (Table 1.8). In general, the higher the prevalence of HIV infection in the population, the greater is the probability that a person testing positive is truly infected. With increasing HIV prevalence the proportion of false-positives decreases. Conversely, the probability that a person with a negative test result is uninfected declines slightly as HIV prevalence increases. It is necessary to conduct a second or supplemental test if the first test is reactive, as this markedly increases the positive predictive value (Table 1.8). In settings with a low-level HIV epidemic, tests with a sensitivity Table 1.7 Predictive value of HIV-detection assays True HIV status + - a b a+b Test results + True positive False positive - c d c+d False negative True negative a+c b+d Sensitivity = a/a+c Specificity = d/b+d Positive predictive value = a/a+b Negative predictive value = d/c+d Note: Minimum standards for sensitivity and specificity recommended by WHO are 99% and 95%, respectively. HANDOUT 21

44 Module 1 Submodule 2 Introduction to HIV testing or specificity greater than 99% should be used in order to achieve satisfactory positive predictive values. Table 1.8 Positive and negative predictive values* at various HIV prevalences HIV prevalence 0.1% 1.0% 5% 10% 30% NPV with one non-reactive test 100.0% 100.0% 99.9% 99.9% 99.6% PPV with one reactive test 9.0% 50% 83.9% 91.7% 98.5% PPV with two reactive tests 90.8% 99.0% 99.8% 99.9% 100.0% *A sensitivity of 99% and a specific city of 99% have been used in these calculations. Predictive values have been rounded to one decimal place. NPV: negative predictive value; PPV: positive predictive value Source: World Health Organization. Rapid HIV tests: Guidelines for use in HIV testing and counseling services in resourceconstrained settings; Testing algorithms/strategies The accuracy of a result is increased if two HIV antibody assays are used, because false-positive results are possible for any assay. The gains in accuracy of repeat HIV testing must be weighed against the increased costs. UNAIDS and WHO recommend three testing strategies to maximize accuracy while minimizing costs depending on the setting. Strategy one: All blood is tested with one ELISA or rapid antibody assay. All positive results are considered infected and all negative results uninfected. This strategy is employed in two main settings: transfusion/transplant service and surveillance. In the former setting, the particular assay used should be a combined HIV-1/HIV- 2 assay, which is highly sensitive. Units of blood that return reactive or with intermediate results must be considered infectious and discarded. When using this strategy for surveillance, the assay employed need not be as sensitive as that outlined above for transfusion and transplant safety. Strategy two: All samples are initially tested with one ELISA or rapid test. Any sample found to be reactive with the first test will be tested by a second test, which should differ from the first test in that it uses a different method and/or antigens. Serum that is reactive in both assays is considered HIV infected while serum that is nonreactive on both assays is considered negative. Discordant results (i.e. individual tested positive on first assay and then tested negative on second assay) 22 HANDOUT

45 Module 1 Submodule 2 Introduction to HIV testing should be repeated with the same assays. If, however, the results remain discordant after repeat testing, the serum should be considered indeterminate. This strategy is predominantly employed for the clinical diagnosis of HIV disease. However, it may also be used for surveillance programmes in low-prevalence populations. Repeat testing strategies are recommended for surveillance in low-prevalence countries due to the low positive predictive value of a single test. All samples for surveillance programmes that remain discordant after repeat testing are considered indeterminate. The indeterminate results should be reported and analysed separately in the annual surveillance reports. Strategy three: This is similar to strategy two except that a third test is performed on all positive samples that have been detected. Therefore, all concordant positive specimens and all discordant specimens are retested using a third assay. The three tests employed in this strategy should be based on different antigen preparations and methodologies. Any sample which results in an indeterminate results with the third test will be considered indeterminate. This strategy is currently used in VCTs in India In general, while selecting which tests to employ in these strategies, the most sensitive test should be used first, followed by the more specific tests. Serial versus parallel testing algorithms Most testing strategies employ serial testing patterns with a second test not being performed if the first assay indicates a negative result. Since a highly sensitive assay is employed as the initial assay in serial testing algorithms, false-negatives are extremely unlikely. However, false-negatives are expected to increase in highprevalence cohorts. Parallel testing, on the other hand, routinely uses two HIV assays on each sample tested. The first assay should be more sensitive while the second should be more specific. The assays differ in the antigenic targets, methodology, and sensitivity and specificity. In the case of a discordant result, the assay is repeated using a third, different test known as the tie-breaker. For quality control purposes, the tie-breaker result may be confirmed by western blot assay (or ELISA, if three rapid tests have been used) at a later time. Although more expensive than serial testing, parallel testing follows a less complex pathway in the event of discordant results than those outlined for serial testing. Other advantages of parallel testing include: HANDOUT 23

46 Module 1 Submodule 2 Introduction to HIV testing A reduction in the risk of false-negative results Needs only one finger-prick Favourable perception that two tests are better than one Reduces the stigma associated with the patient being called back for a second test NACO is promoting the use of HIV rapid tests for VCT services using a serial testing algorithm (Fig. 1.7). Samples found nonreactive in the first rapid HIV test are considered negative for HIV antibodies. The client is given a negative test report after post-test counselling and explanation of the window period. Samples found seroreactive in all three rapid HIV tests (with different antigen principles) are considered positive for HIV antibodies. The client is given a positive test report after post-test counselling. Samples found seroreactive in the first rapid HIV test but nonreactive in one or both of the two subsequent rapid HIV tests (using different antigen principles) are Fig. 1.7 Serial testing algorithm for VCT services recommended by NACO 24 HANDOUT

47 Module 1 Submodule 2 Introduction to HIV testing considered indeterminate. The client is not provided a report and is advised to repeat the HIV test after 4 6 weeks. The NACO testing algorithms are regularly revised and updated based on WHO recommendations. For more specific advice on matching testing strategy to seroprevalence, refer to NACO or the Weekly Epidemiological Record. Situations when HIV antibody assays cannot be used to diagnose HIV infection There are recognized clinical situations in which HIV infection cannot be diagnosed by standard HIV antibody assays. Two such situations include: Window period of acute infection, and Diagnosis of HIV in the newborn. Window period of acute infection The window period represents the period between the time of initial infection with HIV and the time when HIV antibodies can be detected in the blood stream. During this period, HIV replicates in the blood and lymph nodes; patients are highly infectious and may be symptomatic, but their blood will test negative for HIV antibody. The window period can last up to 12 weeks and may vary between assays using different methodologies. HIV infection cannot be successfully diagnosed during the window period using antibody-based assays. Assays which detect part of the virion (as opposed to the antibody of the infected host) are employed in this situation. The tests most commonly used in this situation are the p24 antigen and the proviral HIV DNA assays. The p24 antigen assay detects the viral protein p24. The assay has high specificity (>95%) but its sensitivity is low (80%). The proviral DNA detects the presence of HIV DNA that is integrated into the host genes in peripheral blood lymphocytes. This assay is based on polymerase chain reaction (PCR) technology and is highly specific as well as highly sensitive (98% and >99%, respectively). The performance of this test in detection of HIV-1 and non-hiv-1 subtypes has not been determined. The HIV DNA assay is available only in the research setting. HIV RNA PCR tests are not recommended for the diagnosis of acute HIV infection because of the significant rates of false-positive results (10%). Typically, true positive results are greater than 100,000 copies/ml whereas false-positive results are generally less than 1000 copies/ml. Diagnosis of HIV in the newborn HIV antibody assays cannot be used to diagnose HIV infection in the neonate because of the secondary transmission of maternal antibodies via the placenta or breast milk. HANDOUT 25

48 Module 1 Submodule 2 Introduction to HIV testing Maternal antibodies may be present in the neonate for up to 18 months. Neonates will test HIV antibody positive whether they have HIV infection or not during this period. Antenatal diagnosis is confirmed at 18 months of age by a persistently positive HIV antibody test. HIV can be diagnosed in the newborn before this time-point by using a variety of nonantibody-based assays. These assays include HIV p24 antigen, viral culture (of peripheral blood mononucelar cells) or those estimating the HIV-viral load detecting either HIV RNA or HIV DNA. The sensitivities of these assays ranges from 8% to 32%, from 95% to 100%, and >99%, respectively. Detailed discussion of the diagnosis of HIV-infection in the newborn is beyond the scope of this manual. COUNSELLING ISSUES RELATED TO HIV ANTIBODY RESULT PROVISION Counsellors must be able to appreciate the possibility of false-negative and falsepositive HIV antibody results and the window period to be able to advise patients accurately on the interpretation of their test results. False-positive results Currently available HIV antibody tests are extremely sensitive and false-positive rates are appreciable, particularly in low-prevalence populations. All clinical HIV-testing strategies require repeated HIV antibody assays to be undertaken. A false-positive on one assay is unlikely to also test positive on the second assay. Potential reasons for false-positives include technical error, serological cross reactivity, and repeat thawing and freezing of the sample. False-negative results A false-negative result reports that the sample is not HIV-infected when in fact it is infected. The most common reason for a false-negative HIV antibody result is that the patient was recently infected with HIV and is currently in the window period. Therefore, accurate HIV risk assessment must be undertaken during this period. Confidential and anonymous HIV testing Most people with HIV infection are asymptomatic. They have no symptoms that clinically suggest a decreased immune function. Therefore, a laboratory test is required to make a diagnosis of HIV. A client may request an HIV test because of self-perceived risk or for other reasons. A health-care provider may also recommend a test based on a patient s behavioural history and/or clinical findings such as STIs or OIs. Regardless of the circumstances in which a person seeks HIV testing, HIV antibody testing and counselling should always be voluntary and confidential. 26 HANDOUT

49 Module 1 Submodule 2 Introduction to HIV testing HIV testing must be voluntary in that the client gives informed consent for the test to be undertaken after pre-test counselling and in the absence of coercion. Information about the individual and his/her sexual partners must be kept strictly confidential. Confidentiality will help obtain a client s trust and avoid stigmatization and discrimination. Careful record management is a prerequisite for confidentiality. There are in general, three methods to label blood samples to ensure confidentiality: Linked, anonymous testing Linked testing (used in VCT) Unlinked, anonymous testing Linked, anonymous testing In linked, anonymous testing, no name, address or other client identifiers are recorded. The client is given (or can choose) a unique number or code, which is used for counselling records and on the blood samples which are sent to the laboratory. The result from the laboratory for the specific number is reported back to the clinic/counselling site. The individual must come to the clinic/site and identify themselves with the number or code to get the HIV test result. In this procedure, no record is kept of the client who provided blood for the samples and there is no way to trace the client if they do not return for the results. Linked testing (used in VCT) Clients visiting the VCTC are assigned a Personal Identification Digit (PID) number, which is maintained by the counsellor. The PID number is marked on the blood sample that is sent to the laboratory. The sample is linked to the individual client through the PID number. Laboratory scientists and other people having access to laboratory records will not be able to identify the client. The test results are returned from the laboratory to the counsellor based on the PID number. Upon return to the VCT, the client presents the PID number to the counsellor for their report. The identity of the client is known only to the counsellor. The current VCT procedures fall into this category. Unlinked, anonymous testing Unlinked, anonymous testing is often performed on blood samples obtained for other reasons (for example, syphilis serology in antenatal clinics or blood donations). In this testing procedure, all identifiers are removed from the blood sample and it is tested for HIV antibodies. In this context, unlinked, anonymous screening means not only that a test result cannot be traced back to the client who provided the blood specimen but also that no record is kept of the client who provided the blood specimen for the sample. Epidemiologists and Ministry of Health use unlinked, HANDOUT 27

50 Module 1 Submodule 2 Introduction to HIV testing anonymous screening to monitor trends in HIV infection in different geographical areas and populations, and to further our understanding of the natural history of HIV infection. ASSAYS FOR STAGING HIV DISEASE AND MONITORING EFFICACY OF ART A number of new assays have been introduced for staging HIV disease. These assays are also useful for monitoring the efficacy of ART. The two important assays in this category are: CD4 tests Viral load tests CD4 tests CD4 tests are useful for staging of HIV disease, for assessing the need to initiate ART (WHO Stages I and II) and for monitoring the efficacy of ART. The most commonly used method for CD4 counts is the fluorescent activated cell sort (FACS) count. Fig. 1.8 Linked, confidential and anonymous HIV testing Source: WHO guidelines for using HIV testing technologies in surveillance: Selection, evaluation, and implementation 2001 WHO/CDS/EDC/ HANDOUT

51 Viral load tests Module 1 Submodule 2 Introduction to HIV testing Viral load tests are used to detect the number of viral copies present in one millilitre of blood. They are used for monitoring the efficacy of ART. However, in view of the high costs, carrying out the test is recommended only if adequate resources are available. It is not recommended as a routine procedure. ENSURING THE QUALITY OF HIV TESTING IN VCT SERVICES It is important that all VCT services develop a quality assurance (QA) programme. Ongoing external quality assurance scheme (EQAS) A reference laboratory provides the opportunity to continually review the testing and reporting of HIV test results at individual sites. Proficiency testing Every month individual sites send a random sample, usually 5% of the total sample load (ideally including positive and negative test results), to the reference laboratory for ELISA test cross-checking. All indeterminate results obtained using rapid test kit algorithms are confirmed with ELISA testing before the results are provided to the client. Critical issues for maintaining quality assurance (QA) Use of test kits that have not expired Training in the technology being used Adherence to manufacturer s instructions Correct interpretation and transcription of results by the person reading the results Phases in the development of testing QA Pre-analytical phase Training of laboratory technicians and health-care workers Laboratory safety Specimen collection, labeling and transport conditions Number of specimens tested Selection of test kits Availability of test kits Expiry of test kits use before expiry dates Storage of test kits according to manufacturer s guidelines Analytical phase Manual on written procedures HANDOUT 29

52 Module 1 Submodule 2 Introduction to HIV testing Testing performance Correct use of reagents (if any) Inclusion of internal quality control (QC) in test kits QC monitoring Post-analytical phase Interpretation of results Transcription of results, e.g. recording results on the forms using the correct identifier code Entering of data into the tracking system (computer and/or hardcopy) Maintenance of records Review of quality control 30 HANDOUT

53 Module 1 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support Handout Submodule 3: Role of VCT in HIV prevention, care and support Session objectives At the end of the training session, trainees will be able to: Discuss the concept of VCT Define the aims and objectives of VCT Define the concepts of HIV counselling, HIV testing and informed consent Discuss the enhanced efficacy of VCT over mandatory testing Discuss the evidence that VCT contributes to reducing HIV transmission Discuss the evidence that VCT facilitates behaviour change in the client Discuss the cost-effectiveness of VCT services WHAT IS VCT? VCT is a public health strategy that aims at reducing (preventing) HIV transmission by: 1. Increasing people s access to knowledge and understanding of HIV status on a voluntary basis 2. Facilitating early uptake of services for HIV-positive and -negative people (medical, psychological, legal and social) 3. Providing tools for the adoption of safe behaviour 4. Increasing awareness and information in communities 5. Reducing and removing stigmatization and discrimination associated with the epidemic VCT VERSUS TRADITIONAL HEALTH-CARE SERVICES An important difference between VCT and traditional health-care services is that most health-care services (e.g. TB services) are mainly accessed by people who are already sick and present with symptoms. The motivation for people to access these services is to receive treatment and get cured. The aim of VCT as a public health strategy is to reach people early, i.e. before they are sick. VCT targets people who are healthy (or feel healthy) and who may have indulged in high-risk behaviour (HRB) or are exposed to HIV. The services these people seek in a VCTC range from information and clarification of doubts, to diagnosis and treatment of treatable diseases. HANDOUT 31

54 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support With no cure for AIDS, clients who visit VCTCs face more fear, stigma and discrimination than people accessing traditional health-care services. Since it is based on a voluntary approach, to make VCT a successful public health strategy it is important to establish linkages of treatment and care to the quality and range of services provided in VCTCs, including friendliness and professionalism of staff as well as confidentiality. VCT: THE GATEWAY TO HIV PREVENTION AND CARE HIV prevention High-quality and voluntary HIV counselling and testing are effective (and costeffective) components of prevention approaches, which promote behaviour change to reduce HIV transmission. Clients who attend VCTCs and receive quality counselling (interpersonal communication) typically reflect deeply on their values and sexual practices and a diagnosis (whether negative or positive) is often associated with reduced risk behaviour. VCT offers couples a way to find out each other s HIV status and to plan accordingly. Counselling can assist in reducing HIV transmission between serodiscordant couples. High-quality VCT services need to be made available and accessible to all the people, particularly in high-prevalence settings. An entry point to HIV treatment and care The value of VCT as an entry point for appropriate medical and supportive care is equally important. With the expansion of interventions for the prevention of parent- Fig 1.9 The gateway to prevention and care 32 HANDOUT

55 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support to-child transmission (PPTCT) of HIV, and access to ART, the expansion of accessible VCT services has become most urgent. To ensure the safety and efficacy of most interventions, access to VCT is essential. In addition to such public health gains, VCT is also regarded as a human rights imperative since HIV infection has so many serious and long-term implications for health and well-being, including for the reproductive, sexual and family life of individuals, and for their social and productive life within their communities. VCT is already a key component of HIV programmes in developed countries, but until recently has not been a major strategy for developing countries. However, its importance in HIV prevention and for improving access to care means that VCT services are being more widely promoted and developed. Many countries are gradually instituting VCT as part of their primary health-care (PHC) package. PURPOSE OF HIV TESTING HIV testing is performed for a number of reasons. Surveillance Anonymous and unlinked serological testing is used to develop epidemiological data that assists in HIV prevention and service planning. Blood screening Donated blood is screened for the presence of HIV to ensure the safety of clinical blood supplies. Voluntary individual testing Individuals voluntarily choose to undergo the test to find out their HIV status. Diagnostic testing This term refers to the testing done when clients present for the management of an illness. This diagnosis forms a part of the clinical management of the client. The test should always be conducted with the client s knowledge and consent. Counselling should be conducted before testing (HIV pre-test counselling) and at the time of provision of results (HIV post-test counselling). UNITED NATIONS POLICY ON VCT VCT is based on the requirement that testing for HIV be based on the informed consent of the person being tested. HIV testing must always be the individual s HANDOUT 33

56 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support informed decision. There is no evidence that mandatory testing is effective; the UN and the Government of India do not support mandatory testing. Mandatory HIV testing is likely to be detrimental to long-term HIV prevention efforts as it drives people underground, has no component for increasing awareness and effecting behaviour change, and creates a false sense of security. COUNSELLING IN VCT Counselling is a confidential dialogue between a client and counsellor aimed at enabling the client to cope with stress and make personal decisions related to HIV/ AIDS. The counselling process includes an evaluation of the personal risk of HIV transmission and facilitation of preventive behaviour. VCT denotes any intervention that includes a minimum of pre- and post-test counselling which should include the clinical benefits and prevention benefits of testing, the right to refuse, follow-up services offered, and in case of positive result, (partner) notification. During post-test counselling, further information about prevention treatment, care and support can be provided. Many VCT services also offer longer term ongoing and supportive counselling. Necessary pre-conditions for effective VCT services Irrespective of the approach used for VCT, a number of minimum requirements must be met if VCT services are to be considered truly ethical and beneficial. The principal among these requirements are discussed below. Informed consent Voluntary versus mandatory testing Mandatory testing Creates stigma and discrimination against people with HIV Drives people underground to escape testing people at the highest risk for HIV may not be reached Damages the credibility of health services and discourages people from using them in general Creates a false sense of security not all people with HIV are identified (false negative) Expensive, and diverts resources from effective prevention VCT and informed consent A deliberate and autonomous permission given by a client to a health-care provider. The permission is based on adequate understanding of the advantages, risks, consequences and implications of the HIV test. This permission is the choice of the client and can never be implied or presumed. 34 HANDOUT

57 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support Counselling and testing must be truly voluntary, and individuals should be able to opt out of or refuse counselling or testing if they do not think it is in their best interest. It is recommended that testing always be accompanied by counselling. If a client declines counselling, it is advisable to try and raise the essential issues which are normally addressed in pre-test counselling. However, it must be emphasized that this providing of information is not a substitute for counselling. It is important that counsellors present pre-test information to clients in such a way that they can clearly understand the benefits of counselling. Ideally, written consent should be obtained before testing. If the testing is conducted in an anonymous clinic, signed consent can be filed separately. Confidentiality It is imperative that governments develop the necessary legislative and policy infrastructure to support confidential HIV counselling and testing, and such frameworks should include a provision for penalties where confidentiality is breached. The Constitution of India protects people s right to privacy. Many healthcare settings have established confidentiality procedures for patient information, including HIV tests and redressal systems. It is important that counselling and testing centres develop policies to protect the confidentiality of clients. All levels of staff should be briefed on the policy and rationale behind it. While sharing information for referral purposes, it is advisable to obtain written consent from the client. Consent should include specific information as to what information is to be shared and with whom. Although there are advantages of sharing information about the HIV status of the client, those being tested must be assured of the confidentiality of their test results. The risks and benefits of sharing/ not sharing HIV test results with the health-care or family members need to be discussed and weighed with the client. The decision to share or involve anyone else must be made by the person undergoing VCT. Anonymous testing protects the identity of clients. In clinics conducting anonymous testing, codes rather than patient names are allocated to the client and attached to the medical record and blood samples. Reporting a positive HIV test result to a central data registry may also be done using a coding system. Many countries have adopted this strategy for national HIV registries. LEGISLATION AND PUBLIC EDUCATION TO PREVENT DISCRIMINATION Community education programmes, legislation and public health policies which respect human rights can assist in reducing the discrimination experienced by HIVpositive persons. Health workers may also require education with regard to HANDOUT 35

58 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support discrimination, and all health services should have policies in place which prevent discrimination towards patients by health workers. The use of VCT services may be limited due to the fear of discrimination. Fear of discrimination also may reduce the rate at which people return to collect their results. QUALITY CONTROL It is essential that the quality of both testing and counselling be assured, with appropriate monitoring and evaluation being a key and planned component of interventions. Counsellors and other health-care workers involved in providing VCT must have adequate training and should work under clinical supervision to ensure that high-quality service is provided. NEED TO SCALE UP VCT SERVICES Despite these factors the number of people who know their HIV status remains relatively low (approximately 5% of the world s population). This number needs to be substantially increased to multiply the impact of prevention approaches, and to bring those in need of care and treatment into the health-care system. Low coverage characterizes most of sub-saharan Africa, and other parts of the world. The recent United Nations Declaration of Commitment on HIV/AIDS contains a commitment to the rapid scaling up of VCT services in general, with particular emphasis on accelerating access to PPTCT interventions and ART, necessitating the rapid development of VCT to serve as an entry point for these interventions. The first International VCT Technical Consultation was convened by WHO and UNAIDS in Harare, Zimbabwe in July Its primary purpose was to share the experiences of VCT delivery in all the regions. The challenges and advantages of employing various approaches to VCT to serve different populations were also explored, as were the benefits and problems of integrating VCT with other health interventions. It was acknowledged that there is great political and international will to develop and expand VCT services, particularly in high-prevalence, developing countries. In June 2004, UNAIDS/WHO issued a policy statement to accelerate access to HIV testing and knowledge of HIV status. Especially as access to ART is scaled up, health systems have a responsibility to actively promote HIV testing as part of a comprehensive prevention, treatment and care approach. The primary model for HIV testing so far has been client-initiated access to VCT services. The UNAIDS/WHO policy statement suggests that in addition, providerinitiated HIV counselling and testing approaches in clinical settings should be promoted, i.e. health-care providers routinely initiating an offer of HIV testing or referral to VCT in a context in which the provision of effective prevention and treatment services is assured. 36 HANDOUT

59 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support UNAIDS/WHO recommend the following four types of HIV testing 1. Voluntary counselling and testing Client-initiated HIV testing to learn HIV status provided through VCT. UNAIDS/ WHO promote the effective promotion of knowledge of HIV status among any population that may have been exposed to HIV through any mode of transmission. Pre-testing counselling may be provided either on an individual basis or in group settings with individual follow-up. 2. Diagnostic HIV testing is indicated whenever a person shows signs or symptoms that are consistent with HIV-related disease or AIDS to aid clinical diagnosis and management. 3. A routine offer of HIV testing by health-care providers should be made to all patients: in a sexually transmitted infection (STI) clinic or elsewhere to facilitate tailored counselling based on knowledge of HIV status in the context of pregnancy to facilitate an offer of antiretroviral prevention of mother-to-child transmission managed/treated in tuberculosis programmes. seen in clinical and community-based health service settings where HIV is prevalent and ART is available (IDU treatment services, hospital emergencies, internal medicine hospital wards, consultations, etc.) but who are asymptomatic. Explicit mechanisms are necessary in provider-initiated HIV testing to promote referral to post-test counselling services emphasizing prevention, for all those being tested, and to medical and psychosocial support, for those testing positive. The basic conditions of confidentiality, consent and counselling apply. The standard pre-test counselling used in VCT services can be adapted to ensure informed consent. The minimum amount of information that patients require in order to be able to provide informed consent is: the clinical benefit and the prevention benefits of testing, the right to refuse, the follow-up services that will be offered, and in the event of a positive test result, the importance of anticipating the need to inform anyone at ongoing risk who would otherwise not suspect they were being exposed to HIV infection. 4. Mandatory HIV screening UNAIDS/WHO support mandatory screening for HIV and other blood-borne viruses of all blood that is destined for transfusion or for manufacture of blood products. Mandatory screening of donors is required prior to all procedures involving transfer of bodily fluids or body parts, such as artificial insemination, corneal grafts and organ transplant. In provider-initiated testing, whether for purposes of diagnosis, offer of antiretroviral prevention of mother-to-child transmission or encouragement to learn HIV status, patients retain the right to refuse testing, i.e. to opt out of a systematic offer of testing. HANDOUT 37

60 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support The cornerstones of different HIV testing approaches must include improved protection from stigma and discrimination as well as assured access to integrated prevention, treatment and care services. The conditions under which people undergo HIV testing must be anchored in a human rights approach which protects their rights and pays due respect to ethical principles. The conditions of the 3 Cs continue to be underpinning principles for the conduct of HIV testing of individuals. Such testing of individuals must be: confidential accompanied by counselling conducted only with informed consent, meaning that it is both informed and voluntary. HIV counselling in VCT A confidential dialogue between a client and counsellor aimed at enabling the person to cope with stress and make personal decisions related to HIV/AIDS. The counselling process includes an evaluation of the personal risk of HIV transmission and facilitation of preventive behaviour. What are the documented benefits of VCT? Voluntary counselling and testing technical update, UNAIDS, 2000 Counselling and psychosocial support assist in test-taking decision-making and coping (Zimbabwe, Kenya, Uganda, Tanzania, Thailand, Brazil, Congo, Ukraine) Counselling assists HIV status disclosure to family members and loved ones (Tanzania, Uganda, Ukraine) VCT reduces risk behaviour, especially in those who are HIV-positive (Kenya, Tanzania, Trinidad) VCT facilitates access to community support, material support and psychosocial care EVIDENCE OF EFFECTIVENESS OF VCT IN HIV PREVENTION AND CARE Evidence of the importance of promoting VCT is now accumulating in many parts of the world and in many areas of activity. Examples of the clear, potential benefits include: Change in sexual behaviour: Many studies have demonstrated that VCT can help people change their sexual behaviour to prevent HIV transmission. Furthermore, a recent multicentre study in Africa demonstrated that VCT can be a cost-effective intervention to prevent sexual transmission of HIV. PPTCT of HIV: Cheap and effective interventions are available for PPTCT. The majority of these rely on identifying pregnant women with HIV so that they and their infants can benefit from these interventions. There are currently many 38 HANDOUT

61 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support research projects, pilot projects and some national PPTCT programmes offering VCT to pregnant women. Increased access to treatment and care for PLHA: Co-trimoxazole prophylaxis and TB preventive therapy are relatively cheap and easy to administer. They have been shown to reduce morbidity in PLHA and several projects are currently successfully implementing these interventions following VCT. As ART becomes available, early knowledge of the HIV status and thus access to VCT become more important. Several countries have initiated ART-access projects and there is increasing political pressure to make ART more widely available for PLHA in developing countries. This will necessitate the development of VCT services where they are currently not available and will increase demand at VCT sites as ART becomes accessible. Reducing stigma and denial, and promoting normalization: These are major factors in HIV-prevention efforts, and it has been proposed that the wider availability of VCT (thus increasing the number of people who are aware of their HIV status) can make a major contribution towards these goals. In Uganda, AIDS Information Centres in Kampala and elsewhere have counselled and tested approximately half a million people, and are thought to have contributed towards the reduction in the incidence of HIV infection that is now being observed. In Thailand, it has also been proposed that the availability of VCT was an important component in challenging stigma and preventing new cases of HIV infection. VCT as a human right: As it is more difficult for people to take decisions about their sexual behaviour and about having children without knowing their HIV status, access to VCT could be seen as part of a basic right to health care. HIV prevention for IDUs: In many parts of the world, IDU is the major driving force behind the HIV epidemic. Unless large-scale comprehensive HIV-prevention programmes (incorporating safe injection/needle exchange, drug treatment and VCT) can be implemented, the prevalence of HIV infection among IDUs will continue to rise and may increase in the general population as a result. Advances in HIV testing technology: As simpler and cheaper rapid HIV diagnostic tests become available, VCT will become more practical and economical, and more people may wish to know their status. However, in any VCT service, the personnel costs associated with counselling and support outweigh the diagnostic costs of testing, and this should be taken into account while planning and budgeting. VCT Summary of evidence V (voluntary) encourages people to present at services they may otherwise avoid C (counselling) is more effective than simply providing health information T (testing) quality, same tests are cost-effective and increase uptake and demand for VCT HANDOUT 39

62 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support BENEFICIAL DISCLOSURE AND ETHICAL PARTNER NOTIFICATION Although the epidemic is almost 20 years old in India and though HIV prevalence is high in many communities, HIV/AIDS continues to be denied at many levels; to be highly stigmatized; and to cause serious discrimination. The partner notification strategies proposed as an integral component of VCT programmes are designed to assist in reducing the denial, stigma and discrimination associated with the disease. In the context of HIV/AIDS, UNAIDS and WHO encourage beneficial disclosure of HIV/AIDS status. This disclosure is (i) voluntary; (ii) respects the autonomy and dignity of the affected individuals; (iii) maintains confidentiality as appropriate; (iv) leads to beneficial results for the individual, their sexual and drug-injecting partners, and family; (v) leads to greater openness in the community about HIV/AIDS; and (vi) meets ethical imperatives so as to maximize good for both the uninfected and the infected. An HIV positive person should be encouraged through counselling and tools such as role play to share the positive test result with their spouse, sexual or needlesharing partner(s) and bring the spouse or partner for counselling to a VCTC. This process of helping the client for sharing the test result might take more than one visit. In case of difficulty, the counsellor could contact positive network groups to facilitate disclosure. As per a Supreme Court decision, if the HIV positive partner refuses to disclose the HIV status to the spouse or partner it is the obligation of the treating physician or counsellor to disclose the result to the spouse/partner of the HIV positive person. REQUIREMENTS FOR SUCCESSFUL VCT IMPLEMENTATION Realistic training and support of counsellors Social marketing and community mobilization Referral networks and support services Appropriate facilities time, privacy, confidential information management, accessibility Effective and responsive monitoring and evaluation Lessons learnt Mandatory testing can easily become common practice (e.g. in surgery or obstetric care), and voluntary counselling mandatory. Anonymity and protection of confidentiality are critical for trust in and demand for VCT. Integrating VCT services with comprehensive prevention, treatment and care programmes such as management of family planning, STI, TB is essential. 40 HANDOUT

63 Module 1 Submodule 3 Role of VCT in HIV prevention, care and support Supervision and monitoring are essential for quality services. Providing fast test results while maintaining test quality increases the effectiveness of VCT services. Implementing HIV sensitization of all health-care staff increases acceptance of VCT. VCTs targeting specific groups are effective. PLHAs in VCT play an important role in reducing stigma and discrimination. Counselling sessions should not used as a data collection tool. Defined roles and responsibilities of counsellors, laboratory technicians and health-care staff improve the quality of VCT services. Standardization through forms, guidelines and procedures improves the quality of VCT. PUBLIC HEALTH CHALLENGES Gender and sexual negotiation men control VCT decision-making men control sexual behaviour decisions Broaden VCT models men need to be engaged in VCT for vulnerable groups such as young people, (to be youth-friendly) and groups with high risk behaviour Uninterrupted supply of quality test kits new testing technologies (rapid tests) Quality of counselling Access to VCT and uptake of results Ethical, cost-effective models of counselling group information-giving targeting services to users provision of VCT outreach services telephone counselling for less mobile clients and those who live in areas with limited services (rural areas) Scaling-up without diluting the quality of service Increasing access to care Targeting services to users Caring for carers professional supervision support HANDOUT 41

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65 Module 2 Module 2 Submodule 1 Orientation to HIV and AIDS counselling Handout Submodule 1: Orientation to HIV and AIDS counselling Session objectives At the end of the training session, trainees will be able to: Define counselling Differentiate between counselling and health education Define HIV/AIDS counselling Focus on the aims and importance of HIV/AIDS counselling WHAT IS COUNSELLING? Counselling has been defined as a process of helping/enabling a person/people solve certain interpersonal, emotional and decision-making problems. A counsellor s role is to help clients help themselves. Counselling can be done with an individual, group, with couples or families. Counselling involves Supporting individuals to take charge of their own life by: Providing information, Facilitating emotional adjustments, and Enhancing mental health. and enabling them to: understand and accept the problem, develop resources to take adaptable and realistic decisions, and alter their own behaviour to produce relatively enduring, desirable consequences. Counselling is Specific to the needs, issues and circumstances of each individual client An interactive, mutually respectful collaborative process Goal-directed Oriented towards developing autonomy, self-responsibility and confidence in clients Sensitive to the sociocultural context Eliciting information, reviewing options and developing action plans HANDOUT 43

66 Module 2 Submodule 1 Orientation to HIV and AIDS counselling Inculcating coping skills Facilitating interpersonal interactions Bringing about attitudinal change Counselling is not Telling or directing Giving advice A casual conversation An interrogation A confession Praying Some common errors in counselling Judging and evaluating Moralizing and preaching Labelling Unwarranted assurance COUNSELLING AND HEALTH EDUCATION Table 2.1 differentiates between counselling and health education. Table 2.1 Difference between counselling and health education Counselling Health education Confidential Not confidential A Âone-to-oneÊ process or a small group process For groups of people Focused, specific and goal-directed Generalized Facilitates change of attitudes and motivates Information provided to increase knowledge behaviour change and educate Problem-oriented Content-oriented Based on the needs of the client Based on public health needs Source: Ministry of Health and Family Welfare, Government of India. HIV Testing Manual, NACO, DEFINITION OF HIV/AIDS COUNSELLING WHO defines HIV/AIDS counselling as a confidential dialogue between a client and counsellor aimed at enabling the client to cope with stress and take personal decisions relating to problems arising from HIV/AIDS. The counselling process includes the evaluation of personal risk of HIV transmission, facilitation of preventive behaviour and evaluation of coping mechanisms when the client is confronted with a positive result. 44 HANDOUT

67 AIMS AND IMPORTANCE OF HIV/AIDS COUNSELLING Module 2 Submodule 1 Orientation to HIV and AIDS counselling HIV/AIDS is a life-threatening, life-long illness. Diagnosis of HIV/AIDS has many implications psychological, social and physical. Preventive counselling and behaviour change can prevent transmission of HIV and improve the quality of life. Aims of HIV/AIDS counselling HIV/AIDS counselling is a process with four general objectives: 1. Facilitating decision to undergo HIV test 2. Providing psychological, social and emotional support for People who have contracted the virus and Others affected by the virus. 3. Preventing transmission of HIV by Providing information about risk behaviours (such as unsafe sex or needle sharing), Motivating people to take good care of their health, Assisting them to develop personal skills necessary for behaviour change, and Adopting and negotiating safe sexual practices. 4. Ensuring effective use of treatment programmes by Establishing treatment goals and Ensuring regular follow-up. The counsellor achieves these aims by adopting the following strategies: Extending psychological support Encouraging clients to identify and express their feelings Empowering clients to explore options to develop action plans to deal with issues of concern Encouraging and supporting behaviour change as appropriate Helping clients to draw support from their family, friends and social network Assisting clients to adjust to the grief and loss that inevitably occurs when there is illness loss of a husband, wife or partner, loss of a friend or other loss such as income, housing or employment Taking on an advocacy role, e.g. helping to fight discrimination Acquainting individuals with their legal rights Helping clients maintain control over their lives Helping clients rediscover a meaning to their lives Providing up-to-date information on HIV/AIDS prevention, treatment and care; Informing clients about available resources and agencies (government and nongovernmental) that can assist with the social, economic and cultural difficulties that may arise because of HIV/AIDS HANDOUT 45

68 Module 2 Submodule 1 Orientation to HIV and AIDS counselling Helping clients to contact appropriate agencies. It is a part of the role of a counsellor to maintain awareness and good communication with all agencies within the community. However, the client s permission should be obtained before contacting an outside agency Issues to be addressed by HIV/AIDS counselling HIV/AIDS counselling is intended to address the physical, social, psychological and spiritual needs of the client. Besides, the following issues should also be addressed: Problems related to infection and illness Death, bereavement Social discrimination Sexuality Lifestyle Prevention of transmission Meaning to life It is important to note that, in addition to the issues directly related to HIV/AIDS, clients may be dealing with a range of issues that are pre-morbid or indirectly related to HIV/AIDS, such as alcoholism, drug use, personality problems, unhealthy sexual practices, etc. Specific therapy may be required to assist clients with pre-morbid or co-existing psychiatric illnesses, emotional and behavioural problems, or specific problems such as sexual dysfunction, management of sleep difficulties, panic attacks, etc. HIV/AIDS may also re-activate previously unresolved issues such as those of sexuality, sexual identity (homosexual or bisexual), guilt or shame of being a sex worker, drug addiction or family problems unrelated to HIV. METHODS OF SUPPORT Skills counsellors need HIV/AIDS counselling demands an array of skills. 1. Individual orientation of the client on safe behaviour, e.g. clean needles or safe sex practises. 2. Welfare assessment and referral to welfare agencies for income, housing, employment, childcare and guardianship matters (with the client s permission). 3. Client advocacy: (i) Liaising with health-care providers, nongovernmental organizations (NGOs) and government agencies to ensure that clients can avail medical, welfare and psychosocial services. 46 HANDOUT

69 Module 2 Submodule 1 Orientation to HIV and AIDS counselling (ii) Assisting clients in dealing with discrimination and legal issues. (iii) Community development work and advocacy: Counsellors must ensure that they participate in government committees, e.g. housing, social security, education in schools, etc., to keep the needs and issues of individuals infected with HIV on the agenda of community service planning. 4. Assisting the medical staff in diagnosing and managing poor treatment adherence. 5. Psychological support to PLHA and their families and friends: Psychological reactions to infection and the change in health status are often distressing. Thus, psychological interventions are necessary to assist the client in managing the emotional and behavioural problems resulting from HIV infection and/or the psychosocial circumstances surrounding the disease. Clinical interview and psychometric assessment are essential for the diagnosis and management of dementia and AIDS-related neuropsychiatric disorders, e.g. psychosis and co-morbid or pre-morbid psychological conditions. Counsellors need to provide support to the families, partners and friends of people with HIV infection. Issues that may arise are difficulty in adjusting to a partner s diagnosis, wanting advice on ways to emotionally support the HIV-positive person, fear of sex with an infected partner or anger at the partner for having placed them at risk. Group, family and recreational therapy are all methods of support that should be considered. 6. Neuropsychological assessment: HIV/AIDS can cause significant changes in the central nervous system, which may result in crucial cognitive, psychiatric and neurological conditions. Clients need to be referred to neurologists, clinical psychologists and psychiatrists, if they are available, to assist with: Differential diagnosis of neuropsychiatric conditions Early identification (often, functional loss that does not appear on computerized tomography (CT) scan, magnetic resonance imaging (MRI), etc. will show up in psychological tests) Quantifying the severity of dementia Documenting the response to treatment Establishing mental competency for legal matters, e.g. wills, guardianship, treatment decisions, etc. 7. Supervision and training: Counsellors can provide psychological support and supervision to other health-care workers, peer group facilitators and volunteers. Counsellors are often involved in training volunteers in communication skills, in providing emotional support and referral information. 8. Research: Counsellors can contribute to HIV prevention and treatment programmes by conducting behavioural research into various areas including transmission, risk-taking behaviour, sexuality, adjustment and psychosocial issues HANDOUT 47

70 Module 2 Submodule 1 Orientation to HIV and AIDS counselling in the context of HIV/AIDS. By utilizing behavioural research, counsellors can also assist in general education programmes and planning. 9. Education: PLHA require psychological education on concerns and material relating to their condition. Counsellors can assist in training medical and nursing staff to be sensitive to the psychosocial needs of their patients. Training could be offered in a variety of areas including enhancing communication between patients and their loved ones, and being sensitive to and aware of their psychosocial issues. Counsellors can also contribute to raising awareness in the community about the psychosocial needs of people with HIV infection and the impact of discrimination. 10. Policy development and client advocacy: Counsellors should participate both at government and nongovernment levels to advocate against stigma and discrimination, to establish clients rights, and assist in developing hospital procedures for confidentiality and non-discrimination. 48 HANDOUT

71 Module 2 Module 2 Submodule 2 Values and attitudes of a counsellor Handout Submodule 2: Values and attitudes of a counsellor Session objectives At the end of the training session, trainees will be able to: Identify the specific skills needed for counselling Discuss the significance of self-reflection and self-awareness in honing counselling skills Describe the qualities and attributes of a counsellor Appreciate the need to respect clients irrespective of their culture, race, religion and value systems Reflect on their own attitudes towards HIV/AIDS and discuss means to widen their perspectives towards HIV/AIDS Deal with counsellor s discomfort INTRODUCTION Being an effective counsellor involves honing specific skills (Fig. 2.1). These skills get internalized (become habits) through intensive training, practising what is learnt during training, continual self-reflection and sharpening one s skills (by reading books, updating oneself, retraining). Fig. 2.1 Techniques for honing skills of counsellors HANDOUT 49

72 Module 2 Submodule 2 Values and attitudes of a counsellor QUALITIES AND ATTRIBUTES OF AN EFFECTIVE COUNSELLOR An effective counsellor (Fig 2.2): Is sensitive to cultural (contextual/situational) differences Encourages free expression of feelings by the client Rewards and facilitates communication by the client Enables the client to think of alternative ways of solving problems Recognizes own limitations and makes referrals when required Respects the confidentiality of all that is disclosed by the client Does not indulge in easy gossip Key qualities Fig. 2.2 Qualities of an effective counsellor Effective counsellors need to command the respect of the person(s) being counselled but should not be so far removed from them as to inspire awe or fear. Key qualities of a good counsellor include: Genuineness: This is an important part of the communication process. A genuine counsellor is one who is simply without a façade. A genuine relationship between a counsellor and the client is the basis of successful counselling. Genuine interest is also reflected in your body language. Listening: Listening involves attending to the client s verbal and non-verbal messages. As a counsellor, the way you respond effectively depends on how you listen. In turn, the way you listen plays a major part in encouraging or discouraging a client to keep talking. Only when one has listened can one empathize. Unconditional positive regard: Sensitivity, respect, friendliness and consideration are effective as counselling ingredients. Showing personal warmth is basic in any relationship. Believing the client: A counsellor should be able to communicate to clients that they believe them. As a client, it is very comforting to realize that someone understands how they feel. 50 HANDOUT

73 Module 2 Submodule 2 Values and attitudes of a counsellor Cultural sensitivity: Respect the client s cultural and belief systems. Be sensitive to the cultural context and traditions. Culture informs people on how they do things and when they do them. Acknowledge differences, explore beliefs and ask questions to increase understanding and optimize the assistance provided. Make the client aware of the various alternatives available to them and work with them to consider the advantages, disadvantages and implications of each. Do not, however, take responsibility for the client s problems as this can create dependency and helplessness. Recognize your own limitations: Refer clients to another expert source, if needed. Honesty is very important if you do not know something, tell your client. Counsellors need to have self-awareness of their own issues and the ability to prevent them from influencing the counselling relationship. Patience: Move at the client s pace do not rush them. Ensure that adequate time is provided for the counselling process. Some issues might be too sensitive or maybe the client is not sure yet whether to trust you or not. Do not block free expression of feelings: Blocking free expression of feelings, e.g. crying, anger, etc. can be due to pressure of work the counsellor has other clients waiting or the counsellor may be uncomfortable with emotions expressed. If, as a counsellor, you are under pressure, it is important to remember that the most important person at any given time is the client right in front of you. You need to work with them first before moving on to the next client. If you are uncomfortable with the emotions expressed, could it be that you have unresolved issues? Non-judgemental: Avoid falling into the trap of taking sides and deciding who is right and who is wrong. You are there to listen and not to judge. You need to demonstrate acceptance. Being in control: Stay focused and do not wander all over the place. This usually happens if you are following content enjoying interesting bits of the story and not following the process. Empathetic: This is the ability to see the problem as the client sees it, yet at the same time standing back and objectively observing what is happening to the client and the counselling relationship. Knowledgeable: It is essential to have accurate and up-to-date knowledge. Counsellors should be well informed about the field they work in, including the services and resources available to their client group within their setting and community. Confidentiality is vital. At all times, respect the confidentiality of what is disclosed to you. Do not fall into the trap of easy gossip. There is nothing more likely to destroy your credibility than this. It will also cause distress to the person you are working with. Lack of confidentiality will make a mockery of the entire process of counselling. Table 2.2 lists the qualities of a good counsellor. HANDOUT 51

74 Module 2 Submodule 2 Values and attitudes of a counsellor Table 2.2 Qualities of a good counsellor Qualities perceived in the counsellor that can help the client feel secure enough to engage in self-exploration: Self-confidence Empathy Acceptance Genuineness Trustworthiness Confidentiality Competence ATTITUDES, VALUES AND BELIEFS What is an attitude? When knowledge, skills and habits are combined they form attitudes (Fig. 2.3). In other words, attitudes are learned. Society and culture contribute and influence the development of our attitudes, values and beliefs. People from different cultures and societies are expected to have somewhat different attitudes, values and beliefs. Fig 2.3 Attitudes, values and beliefs Attitudes are perceptions and paradigms we hold about things, events and people. These in turn form our belief systems. Together, attitudes and beliefs create our value systems. For example, analyse any one of your value systems. If you value being courteous to people, trace its belief and attitude. Fig. 2.4 Attitude beliefs model 52 HANDOUT

75 Module 2 Submodule 2 Values and attitudes of a counsellor Despite variations in attitudes within countries, regions and groups, it is attitudes, values and beliefs that: influence our appraisal of and responses to events/situations/persons/objects; determine the way we feel; guide our day-to-day behaviour; are enduring, yet amenable to change. Difficulties and conflicts in counsellor client attitudes, values and beliefs should be resolved through referral, supervision and consultation with experienced counsellors. Probably, one important guideline for all counsellors would be to continuously remind themselves that they are normal human beings, but are also spiritual beings undergoing a human experience. This thought is humbling, and further builds compassion and the courage to meet with every client. It gradually broadens our understanding towards people, events and things. Attitude and self-awareness To enhance self-awareness: Realize that clients come from different sociocultural backgrounds Appreciate that people from different sociocultural contexts hold different values and attitudes Acknowledge that the counsellor s attitudes and values may at times be in conflict with those of the client. These attitudes should not negatively impact on the client counsellor relationship Counsellor self-awareness in relation to HIV/AIDS Counsellor self-awareness involves analysing and understanding their own attitudes, values and beliefs. Counsellors are required to work with people of different backgrounds different races, cultures and religions. Counsellors need to recognize and accept that all people are thus different, and potentially hold attitudes, values and beliefs different from their own. Counsellors further need to consider and examine how attitudes, values and beliefs may impact on how they live their lives and specifically how they conduct their work. Counsellors need to know how to respond when they are confronted with clients who hold opinions different from their own. Counselling is NOT pushing people to conform to certain acceptable standards to HANDOUT 53

76 Module 2 Submodule 2 Values and attitudes of a counsellor live by. Effective counselling must therefore take into account the impact of values, attitudes and culture on the client s perception of the world. Good counsellors should stay away from Pushing or threatening the client Offering their opinion to clients Judging the client or their lifestyle Telling a client they know how they feel Imposing their own beliefs on clients Side-stepping the client s presenting problem Minimizing the client s problem Interrupting Taking responsibility for the client s problem and decisions Becoming immersed in the client s situation Using words such as should and must Blocking strong emotions MANAGING COUNSELLOR S DISCOMFORT What causes the discomfort? One cause of discomfort is the feeling of being stuck. This often happens when counselling becomes focused on the problem (a client goes on and on about what is not working), rather than on the solution. A good way to restore patterns of hope in the client is by energizing resources, goals and solutions. There should be less emphasis on problems and more on identifying past and present solutions. Another cause of discomfort is caused by the physical and emotional exhaustion occurring due to constantly listening to other people describe their problems. Core steps to change feelings and behaviours of the counsellors are: 1. Focus on What am I feeling right now? 2. Assess whether your feelings are happy and pleasurable, or else, unhappy and anxious. (You can identify unhappy feelings by the way your body reacts, i.e. whether you are tightening your jaws, frowning or clenching your fists.) 3. Stop. Disconnect. Breathe. Calm down. Ask What am I telling myself or thinking? 4. Examine and challenge your thinking: What am I telling myself, making up or believing? Is there more than one interpretation of the event? What are the objective data that support or negate my interpretation? 5. Explore and evaluate your response: In how many ways may I respond? What is my optimal response? 54 HANDOUT

77 Is it based on objective data? Is it in my long-term interest? 6. Choose and use the optimal response. 7. Debrief with a colleague later in confidence. Also take care to de-stress. Module 2 Submodule 2 Values and attitudes of a counsellor Counsellor s perspective The counsellor must Be sensitive to the client s situation/context/experiences and how HIV/AIDS is perceived in the client s world Facilitate hope and meaning to life Managing discomfort Counsellors can manage discomfort by: Talking things through with a colleague Taking a break Using relaxation methods Meditation Doing a very different type of work when not counselling Managing time Engaging in some sport Acknowledging the importance of fun and adding humour to your life; laughter is a tranquillizer with no side-effects!! Patting their back: Recording success challenging themselves to record what they did achieve (even those achievements should be included which are considered minor) and reward themselves for positive feedbacks Write a journal Use other personal, self-care strategies Seek feedback from colleagues/clients Also, do the following: Analyse and understand your own attitudes, values and beliefs. Assess how you may respond when you are confronted with clients whose opinions and attitudes are different from your own. HANDOUT 55

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79 Module 2 Module 2 Submodule 3 Counselling: Micro-skills Handout Submodule 3: Counselling: Micro-skills Session objectives At the end of the training session, trainees will be able to: Demonstrate effective counselling skills Reflect on and question the relationship between counselling micro-skills and effective communication, and the development of a supportive client counsellor relationship INTRODUCTION The goal of counselling is to empower the client to live more resourcefully. To achieve this, counsellors need certain interpersonal and communication skills. Communication in counselling is a two-way dialogue with both verbal and nonverbal interaction. It is imperative that the counsellor understands and explores the client s experience of the situation from their perspective. The following counselling micro-skills are important for effective communication and the development of a supportive client counsellor relationship: 1. Active listening 2. Questioning 3. Using silence 4. Non-verbal behaviour (body language) 5. Accurate empathy Suppose you have trouble with your eyes and go to an ophthalmologist for help. After briefly listening to your complaint, he takes off his glasses and hands them to you. Put these on, he says, I have worn this pair of glasses for 10 years now and they have really helped me. I have an extra pair at home; you can wear these. So you put them on, but it only makes the problem worse. This is terrible! you exclaim. I can t see a thing! Well, what s wrong? he asks. They work great for me. Try harder. I am trying, you insist. Everything is a blur. Well, what s the matter with you? Think positively. Okay. I positively can t see a thing. Boy, are you ungrateful! he chides. And after all I have done to help you! HANDOUT 57

80 Module 2 Submodule 3 Counselling: Micro-skills ACTIVE LISTENING What are the chances you would go back to that ophthalmologist the next time you needed help? Not very good. You do not have much confidence in someone who does not diagnose before he/she prescribes. This is the essence of active listening. Active listening is listening with the intent to explore and completely understand the client socially, emotionally and intellectually. It involves indicating or showing that you are listening, hearing and paying attention to the client by words, expression and gestures (i.e. verbal and nonverbal communication). Active listening involves patience. It means long monologues with the client and brief, calm responses from the counsellor. It involves a relaxed posture, occasional nodding, taking of notes, not interrupting while the client is talking and encouraging the client to tell you more with verbal minimal encouragers, e.g. mm-hmm, yes, etc. Communication experts estimate that only 10% of our communication is represented by the words we say, another 30% by the sounds we make (verbal minimal) and Fig. 2.5 Active listening and communication 60% by our body language eg. eye contact or body posture. In other words: Active listening is expressed by the counsellor s verbal and non-verbal cues Genuine concern for the client should be obvious Eye contact is necessary Assuming a relaxed posture to make the client feel relaxed Being attentive and responding to the clients thoughts and emotions at a similar level expressing understanding will facilitate counselling process Acknowledging the client s feelings help to facilitate free expressions and deeper understanding Demonstrating attention by nodding your head Encouraging the client to talk by saying, Mm-hmm, Yes Minimizing internal and external distractions such as TV, telephone, clock, traffic noises, sudden thoughts, ideas, worries, etc. 58 HANDOUT

81 Module 2 Submodule 3 Counselling: Micro-skills Acknowledging the client s feeling by saying, I can see that you are very sad To demonstrate listening, counsellors should reflect briefly on what the client has told her/him by paraphrasing the client s words, reflecting feelings, clarifying and summarizing. Reflection of feeling Pick up the client s feelings and let them know you have understood how and what they are feeling. The focus is on the emotions. For example, Client: I really wanted to meet my sister yesterday but I had too much housework to do and so could not go. Counsellor: It seems you felt sad when you could not meet your sister yesterday. Paraphrasing Repeat in your own words what the client has said to show understanding. Say it in a few words so that it gives a summary or the essence of the client s words. For example, Counsellor: You got worried when you got home yesterday and your wife was not back from work. (After the client has talked in detail of coming home and not finding his wife there). While listening, the counsellor should pay attention to the following: The client s experience The client s behaviour The client s feelings The client s problems and worries The client s perceptions Body language of self and the client Use sentences such as these to demonstrate that you are listening: You seem to be saying In other words, You feel... Because... You seem What s happening to you? What are you thinking about? I wonder if you are feeling... because...? Correct me if I have not understood you correctly. You... Is that correct? What I hear you saying is... While listening, the counsellor should not do the following: Interrupt the client while they are talking. Personalize or narrate your own experiences HANDOUT 59

82 Module 2 Submodule 3 Counselling: Micro-skills Moralize Be judgemental Disregard the client s fears and apprehensions Distract the client by attending phone calls, etc. Go beyond a professional relationship with the client QUESTIONING Ask questions to understand clearly the client s problems or worries and to help the client delve deeper into their own awareness or insight. Questioning is centred around the concerns of the client rather than around the curiosity of the counsellor. Questions need to be open-ended which allow for more explanation/elaboration by the client rather than multiple-choice or Yes-No (closed) questions. Types of questions Closed questions A closed question limits the response of the client to a one-word answer. For example, Do you practise safe sex? Do you know how to use a condom? Closed questions do not give the client an opportunity to think about what they are saying. Answers to such questions can be very brief and do not provide much information. This often necessitates further questioning. Open-ended questions An open-ended question requires more than a one-word answer. For example, What difficulties do you experience in practising safe sex? How do you think you would react if you received a HIV-positive test result? When do you think would be the right time to disclose your test result to your spouse? A simple Yes or a No cannot answer these questions. They invite the client to continue talking and to decide in what direction the counsellor wants the conversation to take. Leading questions Leading questions by the counsellors unwittingly suggest the answers to the client. These questions are usually judgemental. For example, You do practise safe sex, don t you? Do you agree that you should always use a condom? 60 HANDOUT

83 Module 2 Submodule 3 Counselling: Micro-skills Do you think your wife would be devastated if she learns about your illness? When asking questions remember to Ask one question at a time, Look at the person, Be brief and clear, Ask questions that serve a purpose, Use questions to enable clients to talk about their feelings and behaviours, and Use questions to explore and understand issues, and not to collect juicy material for gossip. Do NOT ask questions simply to satisfy curiosity as Irrelevant questions may cause people to feel pushed or reluctant to answer, Too much time may be spent on questioning rather than on active listening, Too many questions may be felt to be intrusive and similar to an interrogation, It is a waste of energy and time both for the counsellor as well as the client because the information generated may not be relevant. USING SILENCE Gives time to the client to think about what to say next Provides space to experience feelings Allows clients to proceed at their own pace Provides time to resolve ambivalence about sharing information/thoughts/feelings Gives the client the freedom to choose whether or not to continue Non-verbal behaviour It is not what you say but HOW you say it that is more important. The majority of communication is non-verbal. If a person s body language is not congruent with what they are saying, the result will be verbal confusion and/or misinterpretation. Effective counsellors are extremely sensitive to non-verbal communication from both: Counsellors to clients, and Clients to counsellors. Examples of non-verbal behaviours are given below. Body language Gestures Facial expression Posture HANDOUT 61

84 Module 2 Submodule 3 Counselling: Micro-skills Body orientation Body proximity/distance Eye contact Mirroring Shifting legs Tapping fingers Paralinguistic Sighs Grunts Groans Voice pitch change Voice volume Voice fluency Nervous giggles Coughs ACCURATE EMPATHY What is empathy? Empathy is the recognition and understanding of the clients thoughts and emotions. It is often characterized as the ability to put oneself into another s shoes, i.e. experience the viewpoint of another within oneself. Accurate empathy is the ability to enter the client s world and see things from their perspective. For this, one has to de-centre or step outside one s own perspective. To have an empathic response is not recalling one s own experiences. What does accurate empathy demonstrate The client experiences being heard and understood. It leads the client to a greater capacity of exploring and accepting previously denied aspects of the self. It facilitates the client in self-expression without inhibition. The counsellor gets further opportunities to understand the client. 62 HANDOUT

85 Module 2 Module 2 Submodule 4 Stages and process of counselling Handout Submodule 4: Stages and process of counselling Session objectives At the end of the session, trainees will be able to: List the key components of the process of counselling Analyse which of the stages of counselling listed in this module are used and which are overlooked in their situations Identify the problem, apply the stages of counselling and decide the mode of therapeutic intervention for a given case study WHAT IS COUNSELLING? Counselling is an ongoing process wherein the client and counsellor work together to assist the client and resolve their problems. In this process, the counsellors enable clients to get a better perspective of their problems and to generate possible alternatives to resolve them. Within the given support of the counselling relationship, the client feels comfortable enough to initiate relevant alternatives to change attitude and behaviour. Most counsellors are aware of the GATHER technique which conveys the essence of counselling, namely, Greet, Ask, Tell, Help, Explain and Revisit. Here we emphasize the need to use this technique, backed up, however, by a strong process. We now focus on building up this process. SOME ASSUMPTIONS IN THE COUNSELLING PROCESS Irrespective of the approach used, the counsellor works with the client in such a way that the process: Believes in the client s capacity to change behaviour Facilitates in the client becoming a fully functioning person Builds self-esteem, self-acceptance and insight Encourages problem-solving by the clients Facilitates a warm, permissive and accepting atmosphere CHARACTERISTICS OF COUNSELLORS ATTITUDE The counsellor s attitudes and attributes play a pivotal role in making the process effective. The attitude of the counsellor is characterized by: HANDOUT 63

86 Module 2 Submodule 4 Stages and process of counselling Acceptance and unconditional positive regard for the client Empathy Genuineness Being non-judgemental SKILLS OF COUNSELLING The counsellor should posses certain skills without which effective counselling is not possible. These skills depict the general attitude towards the client and the ongoing counselling process, and are dealt with in detail in Module 2, Submodule 3: Counselling micro-skills. Rapport-building: Rapport is a relationship of mutual trust or emotional affinity wherein the clients feel they can positively relate to the counsellor. This facilitates interpersonal interaction. It is the job of counsellors to tune their mental set in accordance with that of their clients. To understand the clients mental makeup, counsellors should be acquainted with the clients sociocultural background as well their verbal, non-verbal and paralinguistic behaviour patterns and cues. This knowledge about the client will enhance rapport-building. Information-gathering: Information gathering is an important skill for holistic understanding of the client. Behaviour is complex and, hence, both subtle (such as non-verbal cues) and obvious aspects of behaviour have to be examined. Some responses which facilitate accurate information gathering are: paraphrasing, probing, summarizing, reflecting, clarifying and such others. Attending: Attending is one of the perceptual processes in which the counsellor makes a conscious effort to focus on the client. This will lead to accurate analyses and cataloguing of information for the decision-making process. However, there is the danger of the counsellor slipping into and getting enmeshed in the client s internal dialogue. An effort should be made to prevent this. Listening: Listening is an active process, wherein the counsellor demonstrates his care and concern for the client. Listening takes place at different levels, namely linguistic, paralinguistic and kinesics. Some of the responses of the client have a subtle importance in counselling. These include internal search, mirroring, censoring, exaggerating, minimizing and such others. Non-verbal responses have immense cue value in a counselling process. These are depicted by relaxed posture, eye contact and facial expressions, in other words, physical, emotional and interpersonal cues. Information-giving: Information dissemination should be in simple language, spoken and understood by the client. Information provided should be clientspecific, tailored to their needs and should be relevant to the given situation. The information provided should not appear to be advice or suggestions but should empower the client to take relevant decisions for effecting behaviour change. Predicting: Predicting and reporting prognosis to the client is a difficult task for 64 HANDOUT

87 Module 2 Submodule 4 Stages and process of counselling the counsellor. It would address the issues of lifestyle changes and the consequent changes in the quality of life of the client. Physical well-being is also an important aspect that the counsellor should highlight to improve the insight of the client. Further, systems of feedback and reinforcements are necessary for prediction and follow-up. Coping with burn-out and stress: The counselling profession is often stressinducing. One has to be aware of one s personal stress level as well as feelings of exhaustion and being emotionally sapped. The sources of stress are many. Interpersonal conflicts, resource deficits, limitations of infrastructure, feeling of isolation and stagnation, and worst of all, being subjected to the client s problems and emotional outbursts. It takes a heavy toll on the counsellor, resulting in burn-out. To manage this, one should neither be overinvolved nor detached. Interpersonal relationships with colleagues and clients should be managed positively. Social support is a very important factor in managing stress as are periodic meetings of counsellors, and compulsory leave/weekend to recoup. STAGES OF COUNSELLING The counselling process goes through different stages in a sequential manner. These stages are: 1. Rapport-building 2. Assessment and analysis of the problem 3. Provision of ongoing supportive counselling 4. Planning and initiation of steps 5. Implementation of the plan 6. Termination and follow-up Stage 1: Rapport-building Forming a rapport and gaining the client s trust Assuring confidentiality and discussing the limits of confidentiality Allowing ventilation Allowing expression of feelings Exploring the problem(s), asking the client to discuss their problem Clarifying the client s expectations of counselling Describing what the counsellor can offer and the method of working Statement from the counsellor about their commitment to work with the client This stage is facilitated by a congenial atmosphere with adequate privacy, good seating arrangement, and establishing eye contact with the client. HANDOUT 65

88 Module 2 Submodule 4 Stages and process of counselling Stage 2: Assessment and analysis of the problem Defining and focusing specifically on the problem Identifying and assessing the gravity of the client s problems Explaining and understanding the roles and boundaries of the counselling relationship Establishing and clarifying the client s goals and needs Taking a detailed history Exploring the client s beliefs, knowledge and concerns Assessing the impact of the problem on the client s life Exploring the resources and support available to the client Understanding the level of insight Facilitating a summary of the problem by the client Once the problem has being discussed, the counsellor may Respond to feeling and content and/or Respond with a summary and/or Respond with a question. Stage 3: Provision of ongoing supportive counselling Continuing expression of thoughts and feelings Identifying options Identifying existing coping skills Developing further coping skills Evaluating options and their implications Enabling behaviour change Supporting and sustaining work on the client s problems Monitoring progress towards identified goals Altering plans as required Providing referral as appropriate Stage 4: Planning and initiation of steps Motivating the client for behaviour change Setting attainable goals Planning to achieve goals Planning and initiating is done by identifying the options, identifying existing coping skills, and developing further coping skills Evaluating options and implications to enable behaviour change 66 HANDOUT

89 Module 2 Submodule 4 Stages and process of counselling Stage 5: Implementation of the plan Selecting a plan of action Sequencing the intervention activities Ways of implementation Putting the plan into action Reinforcing and monitoring behaviour change Being supportive while the client effects the change Stage 6: Termination and follow-up Assessing the progress of behaviour change Assessing coping resources Reinforcing follow-up by ensuring that the client is acting on plans, client is managing and coping with daily functioning, and the client has a support system, and supports are being accessed. Assurance provided to the client of the option of returning to counselling as necessary Counselling is a process and not merely a technique through which clients are helped to modify their behaviour and cope with their status quo effectively. The key to effective counselling involves training oneself in a few important skills such as rapport building and listening, which then form the basis for following the procedures and technicalities of counselling, such as assessing the problem, information-giving and so on. HANDOUT 67

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91 Module 2 Module 2 Submodule 5 Behaviour change communication: HIV transmission Handout Submodule 5: Behaviour change communication: HIV transmission Session objectives At the end of the session, trainees will be able to: Demonstrate a knowledge of the behaviour change models and issues relating to the efficacy of different models Demonstrate an understanding of the principles of behaviour change communication with regard to condom use and safe injecting CONSEQUENCES OF UNSAFE BEHAVIOUR What happens when an individual begins to consistently engage in unsafe behaviours? An unhealthy behaviour must be unlearned and the individual needs to: Identify the behaviour as harmful Understand the alternatives available Be able to act on that knowledge Receive the support necessary to maintain the behaviour change For example, an individual with heart disease needs to know what foods contribute to the problem; how to replace them with better foods; how to prepare or acquire these foods; and how to consistently eat them and not return to old eating habits. Supporting behaviour change is a complex interaction between the health-care provider and the client, and requires a great deal of insight into human nature and motivation. The challenge counsellors face is to acknowledge the difficulty in changing one s behaviours while establishing a relationship with clients that will help support their behaviour change. BEHAVIOUR CHANGE MODELS AND HIV INFECTION No model of behaviour change incorporates all possibilities of human behaviour into its design. The three models presented here can be considered a tool in the assessment of clients and the concerns they present. HANDOUT 69

92 Module 2 Submodule 5 Behaviour change communication: HIV transmission The risk elimination model: Abstinence is best This model uses abstinence as a means of eliminating any possible risk of transmission of HIV infection, with the client no longer engaging in sex or sharing needles. The risk of infection is eliminated because the behaviour is eliminated. An example of an educational message for prevention directed at young people would be: Just say no. Pros and cons Some individuals need the warning and the structure that this model provides as a starting point to getting back on track. Many detoxification centres for drugs/alcohol follow this model by getting the client off drugs even for a few days as this may provide a window of opportunity to begin a dialogue with the client about their behaviours. While this model guarantees 100% safety from infection, it is very often the least useful of the behaviour change models. Most people find it extremely difficult to suddenly quit certain behaviour, which may be both enjoyable and long-standing. This model does not acknowledge that individuals find pleasure in engaging in certain behaviours. This model does not allow for alternatives, and turns a blind eye to human behaviour. The risk reduction model: Use a condom or Do not share needles This model acknowledges that individuals do engage in sex and use substances such as intravenous drugs. Assuming that abstinence is not a viable alternative, the risk reduction model advises individuals to engage in safe sexual acts by using condoms whenever they have sex, or by not sharing their needles if they are going to inject substances. Pros and cons On the positive side, this model acknowledges that individuals will continue to engage in risk behaviours. Therefore, it may be better to find a way for them to engage in safe behaviours than to encourage them not to engage in risk behaviour at all. However, this model cannot provide 100% guarantee that individuals will remain uninfected. For example, the client can still be at risk for possible HIV infection if the condom breaks during intercourse. Focusing on how to use a condom does not allow for any discussion with the client about why they are engaging in the behaviours that put them at risk. In addition, clients may experience difficulties in initiating changes. Many counsellors therefore believe that this model lacks the humanistic and individualistic approach necessary for behaviour change. 70 HANDOUT

93 The harm reduction model Module 2 Submodule 5 Behaviour change communication: HIV transmission Promoted by WHO for IDU, harm reduction model challenges the all or nothing approach to behaviour change characterized by the previous models. This model acknowledges that risk is a part of everyone s life and ranks an individual s risk/s for HIV infection among other life issues such as illness, unemployment and drug use. It also acknowledges the difficulties in effecting behaviour changes, particularly in cases of substance abuse. Harm reduction is designed to acknowledge the meaning attached to risk behaviours. In this model, change takes place over time and is incremental. Any positive change is good and one step closer to safe behaviours. The counsellor assists the client to: Identify risk behaviours they indulge in Understand the reasons for their continuing engagement in them Develop strategies for identifying what they can do to move toward healthier behaviours Facilitate the development of self-efficacy Pros and cons An example of harm reduction is the needle exchange programme. A client s addiction is acknowledged, however, stopping addiction is a long-term goal. The harm reduction model acknowledges the difficulty of stopping substance use or risk behaviour. It reduces the harm to the individual by, making clean needles available, thus reducing the risk of HIV infection. The model acknowledges the possibility of relapse after abstinence or other attempts to modify behaviour, and that behaviours change. Some counsellors may undergo an ethical dilemma because this model does not provide the client with protection from immediate infection, as other models do. A number of models are available to the counsellor for use with the client. The models are interchangeable as well; some aspects of one model and some of another may be appropriate at different times for the client. The important issue is for the counsellor to know these models, and to use them not as absolutes but as helpful tools in their interaction with clients. The counsellor should keep in mind that the different behaviour change models presented here could be adapted to their own style, and to the differing needs of their clients. THE PROCESS OF BEHAVIOUR CHANGE Behaviour change is a process, and can be thought of as taking place in stages. Understanding these stages helps strengthen the counselling process; it is equally HANDOUT 71

94 Module 2 Submodule 5 Behaviour change communication: HIV transmission important to know that no behaviour change follows an absolutely predictable pattern. A client can go through the stages of behaviour change many times before a successful change can be achieved. These stages are a tool for the counsellor to apply when assessing the client and for determining which stage of behaviour change the client is in. The different behaviour change stages according to the Centres for Disease Control and Prevention (CDC) HIV Prevention and Counseling Guidelines of 1993 are: 1. Knowledge/awareness 2. Significance to self 3. Cost benefit analysis 4. Capacity-building 5. Provisional try 6. Maintaining behaviour change 1. Knowledge/awareness It is important for counsellors to assess what knowledge and awareness clients have regarding the risk associated with their behaviours. Clients must know that they are at risk before a behaviour change can occur. Open-ended questions can be used for this assessment. 2. Significance to self This is the ability of the client to connect information on risk behaviour to their own behaviour. Often, clients will know how HIV infection occurs, but will not be able to see how they are placing themselves at risk of HIV infection. Clients can respond to their own risk of HIV infection in any of the following ways: Recognizing that their behaviour places them at risk of HIV infection Be unwilling or unable to accept that their behaviour could result in HIV infection Recognizing the risk and feeling helpless, hopeless, and unable to change their behaviour. Counsellors can assist clients in recognizing that their behaviour can place them at risk for HIV infection. 3. Cost-benefit analysis Cost benefit analysis acknowledges that there are both gains and losses for the client in effecting a behaviour change. Cost benefit analysis examines the pros and cons of both the current behaviour and the desired change, and assists clients in expressing the losses they might feel in giving up the old behaviour. 72 HANDOUT

95 4. Capacity-building Module 2 Submodule 5 Behaviour change communication: HIV transmission Capacity-building is preparation for behaviour change, including gaining the practical skills and other supports to manage the risks/costs of behaviour change. Counselling strategies during the stage of capacity-building include: Providing clients with specific, practical and achievable skills Doing reverse role-plays and affirmations For example, counsellors should not only give a demonstration of condom use but also determine the reasons that prevent the client from using condoms at present. Provisional try Provisional try is the stage when the client leaves the counselling session and tries to implement a step toward changing behaviour. Counselling strategies during the stage of provisional try include: Planning for obstacles clients may face Reframing failure with clients counsellors must keep in mind that the behaviour change model allows for endless opportunities for failure Even though provisional tries may not always be successful, even a minimal attempt at a behaviour change can be considered a success and must be supported by counsellors. Maintaining behaviour change and adopting safe behaviour Maintenance of safe sexual behaviours over time depends on interventions that are continuous and repetitive in nature It is expected that some behaviours will change as an individual s life changes. For example, condom use may no longer be necessary when an uninfected person enters a monogamous relationship with another person who is HIV-negative However, other changes or relapses to unsafe behaviour may invalidate the previous safe behaviour and lead to HIV infection Rates of high-risk behaviour (HRB) and new infections will increase if interventions are withdrawn. Therefore, continued risk reduction depends on continued behaviour change programmes, and continued encouragement and support from counsellors USE OF CONDOMS Benefits Effective means of preventing HIV transmission when used correctly May be inexpensive Can also prevent transmission of some STIs and unwanted pregnancies HANDOUT 73

96 Module 2 Submodule 5 Behaviour change communication: HIV transmission Can be obtained without having to see a doctor or nurse Can be fun to use Potential problems Quality may not be assured if old, poorly made or badly stored, may break May feel uncomfortable introducing them into an existing relationship The woman or the younger partner may not be able to effectively assert the right to use condom for several reasons SAFE INJECTING Safe injecting is Not sharing injecting equipment, Using a new or clean needle for every injection, and Not sharing any of the materials used to draw up and prepare the injection. When new needles and syringes are not available, used equipment should be cleaned correctly Counsellors should provide information on cleaning equipment Benefits Using new injecting equipment for each injection eliminates the risk of HIV transmission through injecting Cleaning needles and syringes correctly greatly reduces the risk of HIV transmission Using new or clean injecting equipment reduces the risk of transmission of other blood-borne viruses such as hepatitis C Helps prevent other health problems associated with sharing equipment Potential problems New equipment can be difficult to obtain May be illegal to possess needles and syringes IDUs may be reluctant to visit needle exchanges or buy equipment at pharmacies for fear of being identified as drug users ESSENTIAL ELEMENTS OF BEHAVIOUR CHANGE COUNSELLING FOR CONDOM USE AND SAFE INJECTING 1. Assessment of risk and vulnerability Clients need to assess the personal risk of HIV infection and the various obstacles that may inhibit the use of condoms or safe injecting. 2. Briefing on condoms, condom use and safe injecting Prevention/condom use messages must be crafted to motivate and appeal to the 74 HANDOUT

97 Module 2 Submodule 5 Behaviour change communication: HIV transmission needs, beliefs, concerns and readiness of specific clients. 3. Skills in condom use and safe injecting Injecting correctly should be examined and strengthened. Critical thinking, decision-making and communication skills should also be strengthened to make clients see the benefits of condom use and safe injecting, and to be able to negotiate their use. 4. Making a plan The client should make a plan for condom use or safe injecting and the maintenance of these practices over time in pre-test counselling. 5. Supplies and resources The counsellor should be able to suggest sources of reduced cost, high-quality condoms, steps to safe injecting practice and, where possible, sources of necessary supplies to support safe injecting. 6. Reinforcement and commitment The counsellor should review the client s plan for condom use or safe injecting in post-test counselling and any subsequent visits to the clinic. 7. Supportive environment A supportive environment needs to be created to support condom use and safe injecting, including choices of condom use (male and female condom), supplies for safe injecting, the provision of printed materials, and referral to hotline counselling services. HELPING CLIENTS BECOME AWARE OF THEIR RISKS Assessment of personal risk and vulnerability Clients need to assess personal risk of HIV infection and the various obstacles that may inhibit the use of condoms or safe injecting. Risk The level at which an individual or population engages in activities which place them at risk for HIV infection, e.g. Vaginal intercourse with or without STI Anal intercourse Needle sharing Transfusion of unscreened blood Vulnerability It is a person s ability (or the lack of it) to act on the decisions they take. Factors which reduce the ability to act increase vulnerability and include: Economic pressure on families Lack of access to information on AIDS among the general population, especially young people HANDOUT 75

98 Module 2 Submodule 5 Behaviour change communication: HIV transmission Lack of skills to take rational decisions or to carry them out Inability to access health services and commodities Inability to assert rights PROMOTION OF CONDOMS, CONDOM USE AND SAFE INJECTING Messages on prevention/condom use/safe injecting must be designed to motivate, and must be according to the needs, beliefs, concerns and readiness of specific clients. Among barrier contraceptives, the male latex condom offers the best protection against STIs, including HIV/AIDS. When used consistently, male condoms also provide highly effective contraception. The female condom also protects against STIs, including HIV/AIDS. Vaginal barrier methods such as the diaphragm, cervical cap, sponge and spermicides are less effective, even when these barriers are used with a spermicide. The major public health challenge in reducing the incidence of HIV/AIDS and other STIs is to encourage greater use of condoms among people at risk. Women and men report not using male condoms for many reasons, including fear of partners reactions, opposition from the partner, lack of confidence in the product, lack of access to condoms or decreased pleasure if used. In addition, family planning providers often encourage clients to consider the more effective contraceptives, such as injectables, and discourage reliance on the condom as a means of preventing pregnancy. Despite the fact that the condom is very effective against STIs, many people at risk do not use them. Some bacterial STIs, such as gonorrhoea and chlamydial infection, are easily transmitted, making consistent condom use especially important. Promoting condoms among men and youth, and encouraging better attitudes about condom provision among family planning providers and other health professionals may help reduce the number of new infections. People tend to avoid condom use if they believe their partner is safe. Using behaviour as a surrogate for STI risk may be particularly problematic when studying persons who might vary their use of condoms with partners of varying risk, for example, sex workers perceptions of risk with regular clients, non-regular clients, and live-in partners. Gender issues Addressing gender issues may be as important as focusing on increased condom use. Consistent, sustained use of condoms requires behavioural change. Men s sexual behaviours are linked to their sense of masculinity. In many cultures, assumptions about masculinity may encourage excessive alcohol use or violent behaviour toward 76 HANDOUT

99 Module 2 Submodule 5 Behaviour change communication: HIV transmission women, which can increase risk behaviours. Women may also be at a disadvantage when requesting and negotiating the use of condoms with their partners. Young people Encouraging young people to use condoms and to develop the ability to refuse unwanted sex is also crucial. Globally, HIV infections are rising fastest among those under 25 years of age, especially women. Youth are often inexperienced with condoms, feel invulnerable to risk, have spontaneous sex and are embarrassed to interrupt sex to put on a condom. Some young women need skills to refuse risk behaviour eg. unsafe sex from male partners, especially older men. Young males and females tend to focus more on the prevention of pregnancy rather than prevention of STIs. Messages should be adjusted to focus on the dual protection qualities of condoms. Strategies for encouraging safe injecting and condom use Counsellors need to work with clients to assess personal risk of HIV infection and the various obstacles that may inhibit the use of condoms or safe injecting Prevention/condom use messages must be developed to motivate and appeal to the needs, beliefs, concerns and readiness of the specific client Assess the client s level of technical skills to use a condom and/or inject safely Strengthen critical thinking, decision-making and communication skills to help them realize the benefits of condom use and safe injecting, and to be able to negotiate for their use The client should start making plans for condom use or safe injecting, their maintenance in pre-test counselling Suggest where the client can access affordable, high-quality condoms Provide information on safe injecting practices Suggest sources of necessary supplies to support safe injecting (where possible) Discuss the impact of drug and alcohol use on safe sex Review the client s plan for condom use or safe injecting during post-test counselling and on subsequent visits to the clinic A supportive environment needs to be created to encourage condom use and safe infecting. This can include: Offering condom options, e.g. male and female condoms Supplies for safe injecting The provision of print materials Referral to phone counselling services Normalizing and erotizing safe sex Not judging clients behaviours HANDOUT 77

100 Module 2 Submodule 5 Behaviour change communication: HIV transmission Factors that affect condom use and safe injecting Information about HIV/AIDS Past experiences Social pressure (peers, family etc.) Risk perception (e.g. partner type) Access to condoms Skills to use Willingness of the partner Measures for risk reduction and prevention Accessibility to condoms Family planning programmes, clinics and pharmacies in some countries are often unwilling to distribute condoms to unmarried youth. Accessibility to condoms may also be difficult for youth due to cost, stigma, embarrassment and other barriers. Youth are more likely to use condoms that are more readily available in shops and grocery stores, and through vending machines. Many men and women are reluctant to use condoms due to the reported loss of sensation and pleasure cause by condoms. They may find some of the newer condoms more pleasurable to use, thereby encouraging condom use. Unlike latex condoms, polyurethane male condoms, for example, facilitate body heat transfer, which may increase pleasure. Some products are designed to be easier to put on than traditional latex condoms. Synthetic non-latex condoms will not cause an allergic reaction. Proper use of lubricants will also increase pleasure while reducing friction and the risk of condom breakage. Safe injecting Injections of any sort are an even more efficient way of spreading HIV than unprotected sexual intercourse. Since IDUs are often associated with tight networks and commonly share injecting equipment with others without cleaning, HIV can spread very rapidly in these populations. Also, like other sexually active people, people who inject drugs may transmit/acquire HIV infection to/from their sexual partners if they have unprotected sex. A great proportion of sexual transmission in some countries is a result of unprotected sex with an IDU. In parts of China, India and Myanmar, more women are infected through sex with IDU, than by any other way. IDU also contributes to MTCT. With respect to sexual transmission by IDUs, the main modes of risk reduction are similar to those that should be adopted by all sexually active people namely, the consistent and proper use of condoms, or the avoidance of penetrative sex. 78 HANDOUT

101 Module 2 Submodule 5 Behaviour change communication: HIV transmission With respect to transmission through sharing needles, syringes and other equipment, several options are available. Some of these offer better means of protection than others. In order of efficacy, they include Stopping injecting drug use Always using sterile needles, syringes and other equipment every time Not sharing injecting equipment Cleaning the equipment between and after use Without doubt, the most effective way of reducing the risk of HIV infection is to give up using drugs (risk elimination model) but where this is not possible, changing from injecting to non-injecting drug use can significantly reduce the risk of HIV transmission by non-sexual means. For those who inject opioid drugs such as heroin, this may be achieved through participation in a non-injectable drug substitution programme in which a drug, such as methadone, is administered orally. An important way of making clean syringes and needles more readily available is through needle and syringe exchange programmes. These programmes have several benefits when available. For IDUs, participating in such programmes lowers the proportion of contaminated needles in circulation, thus in general lowering the risk of new HIV infections. They also reduce sharing and re-use occasions. These programmes have also been shown to be effective in preventing the transmission of HIV, and do not increase the use of illegal drugs. However, many governments and law enforcement agencies are reluctant to enact policies that will support such programmes. When exchange programmes are not available, the cleaning of injecting equipment between use may be the viable entry point for behaviour change related to safe injecting. Skills in condom use and safe injecting The client s level of technical skills in using a condom and practising safe injecting should be examined and strengthened. Male condom use Proper use of male condom use It is advisable to decide on the use of a condom with your partner beforehand as you may forget in the heat of the moment. Always check the expiry date or manufacture date on the condom package to make sure it has not expired. Also make sure the manufacturer s date is not more than 4 years old. Press the condom package with your fingers to make sure it is intact. (contd) HANDOUT 79

102 Module 2 Submodule 5 Behaviour change communication: HIV transmission Male condom use (contd) To open the package and identify the appropriate point to tear the package, push the condom downward and carefully tear the package with your fingers. Make sure your fingernails do not damage the condom. DO NOT use sharp objects such as scissors or a razor as they may cut the condom. To put on the condom, the penis must be erect (hard). Ensure that the part to be unrolled is on the outside. Press and hold the tip of the condom with your thumb and forefinger to keep out the air. Place the tip of the condom on the head of the penis and using your other hand, unroll the condom all the way to the base of the penis. Use only water-based lubricants; oil-based lubricants such as vaseline, Crisco, hand lotion or massage oil cause the condom to break. Keep the condom on during intercourse. After ejaculation, while the penis is still in erection, pull out of your partner holding the condom at the base of the penis to avoid it slipping off and spilling semen. Wrap the condom in toilet paper and throw it away as soon as possible where it is out of reach. Do NOT flush condoms down the toilet. NEVER reuse the condom. Fig 2.6 How to use a male condom 80 HANDOUT

103 Module 2 Submodule 5 Behaviour change communication: HIV transmission Female condom use Proper use of the female condom (vaginal sex) It is advisable to decide on the use of a condom with your partner beforehand as you may forget in the heat of the moment. Always check the expiry or manufacture date on the condom package to make sure it has not expired. Make sure it is not more than 4 years old. Using your fingers, carefully open the condom at the indicated place. Make sure your fingernails do not damage the condom. DO NOT use sharp objects, such as scissors or a razor as they may cut the condom. Inspect the condom to make sure it is intact. Rub the outside of the condom to evenly spread the lubricant inside the condom. Add the lubricant as desired. Find a comfortable position for inserting the condom. Hold the condom at its closed end. Squeeze the inner ring (the ring at the closed end of the condom) between the thumb and the middle finger with the forefinger between the two. Spread the vaginal lips with the other hand, and insert the condom in the vagina. Use your forefinger to push the inner ring all the way up in the vagina until you feel the pubic bone with your finger. Make sure the outer ring (at the open side of the condom) lies against the outer lips. Guide and insert the penis inside the condom. Make sure the penis does not go underneath or beside the condom. If during intercourse the penis does not move freely, there is a sound, or the condom is moving in and out with the penis, add lubricant (to the penis or inside the condom). If the outer ring is pushed in the vagina or the penis goes beneath or to the side of the condom, stop and put on a new condom. Keep the condom on during intercourse. After ejaculation and after the penis is pulled out, squeeze and twist the outer ring to avoid spilling semen and pulling the condom out of the vagina. Wrap the condom in toilet paper and, as soon as possible, throw it away out of reach of others. Do NOT flush the condom down the toilet. NEVER reuse the condom. HANDOUT 81

104 Module 2 Submodule 5 Behaviour change communication: HIV transmission Fig 2.7 How to use a female condom for vaginal sex SAFE INJECTIONS HIV can be transmitted through used needles, syringes, cookers, cottons and water. If injectors share any of these, they can become infected with HIV, or pass the virus on to someone else. Bleach kills HIV. Injectors can clean their equipment with bleach and water. Injectors should be urged to always use new injecting equipment. However, where this is not possible, they should in the first instance use the preferred cleaning method known as the 2 by 2 by 2 method. The best scenario is to use sterile equipment for each injection. Anything short of this carries some risk. Needle and syringe cleaning The 2 by 2 by 2 method Injectors should be advised that all syringes they think might be reused should be cleaned immediately after first use. They should then be cleaned again before second use. 82 HANDOUT

105 Module 2 Submodule 5 Behaviour change communication: HIV transmission The best method for cleaning is to use the 2 by 2 by 2 method: 1. Draw COLD water (sterile or cool boiled is the best) into the syringe and then flush it out down the sink or into a different cup. Do this twice. 2. Then slowly draw bleach (full strength 5.25% hypochlorite) into the syringe and shake it for as long as possible: 3 5 minutes are ideal, 30 seconds is the minimum. Flush it out down the sink or into a different cup. Do this twice. 3. Then draw COLD water into the syringe (as in step 1) and then flush it out down the sink or into a different cup. Do this twice as well. Other cleaning methods These methods may be less effective, but may actually be more readily adapted in certain contexts, e.g. street use. If injectors are not going to follow the entire 2 by 2 by 2 procedure, they should be advised to do anything/everything they can to reduce the residue of blood in the syringe. The chance of infection can be reduced if the injector cleans the needle and syringe by soaking the parts in either undiluted bleach or a strong detergent/water solution for as long as possible (at least several minutes), then rinsing thoroughly in water. Injectors can also be advised that boiling needles and syringes for minutes will also sterilize them (although boiling plastic syringes may lead to distortion of the plastic and leakage). In particular, washing the needle and syringe several times (for example, 10 times) immediately after use with cold water before the blood and drug solution have had a chance to dry is likely to flush out most infectious agents. Failing this, using water or even vodka, wine or beer to flush out the syringe and needle before reuse is likely to slightly reduce the risk. People should, however, be cautioned against using this method unless it is a last resort. Making a plan Safe sex and safe injections The client should start planning for condom use or safe injections and the maintenance of these practices over time during pre-test counselling. Critical thinking, decision-making and communication skills should also be reinforced to realize the benefits of condom use and safe injecting, and to be able to negotiate for their use. HANDOUT 83

106 Module 2 Submodule 5 Behaviour change communication: HIV transmission Negotiating safe sex and condom use A counsellor may discuss condom use with a client as follows: When should you start talking about condoms? When should you pull one out and what word will you use? How will you urge your partner to use one? How will you answer these questions and those of your partner? Say repeatedly, I want us to use condoms every time we have sex. Speak clearly with resonance. Start to feel that it is natural to say these words. Give them rhythm. Say them in a soft romantic voice. Say them to protect your rights. Think about whether you will be the one to put on the condom or will your partner put it on. In reality, there are many people who do not consider using condoms to be important. They can find too many reasons or make excuses not to use them. If you make excuses, it means that you do not love yourself or your partner enough. Some people say that they always use condoms. But, when they go out, they may end up having sex with their friends or someone who has caught their eye, male or female. Condoms are not used because they trust their friends, trust each other, or they do not have one when needed. Other people say that sometimes they use condoms and sometimes they don t. If their partner is good-looking and dresses well, they swear that their partner cannot have HIV. But this is not the case. How a person looks is no indication of whether they have HIV or not! Still others say that sometimes they allow their partners to perform anal or vaginal sex and they are not sure whether condoms are used. It is not until they are finished that they know if a condom was used or not. Or, they make excuses: they were drunk, forgot, not quick enough, condoms are difficult to use or unnatural. One problem after discussing condom use with young women, is that girls feel that admitting to using condoms is an indication that they sleep around. But in reality this sign of confidence and responsible behaviour is likely to be more appealing to a guy than sleeping with a girl and finding out later he has an STI. SAFE INJECTING Why do people use drugs? People may use drugs at particular times in their lives: when they are young and experimenting, or old and in need of relief from pain. They also use drugs in different ways at different times. Many theories exist about why people use drugs but there is no simple answer. Drug use and drug problems appear to be influenced by a range of factors. It is important to remember that there are both legal and illegal drugs; legal drugs may be as harmful as illegal drugs. Users of illegal drugs are often poor, stigmatized, discriminated against and jobless or working odd jobs to support their habit. They will beg, borrow or steal to get the 84 HANDOUT

107 Module 2 Submodule 5 Behaviour change communication: HIV transmission next fix. Many are homeless and live on the streets, have low self-esteem, low concern for personal health, and low trust level. Issues concerning IDUs There are many reasons why IDUs share needles and syringes and why there is a lack of clean injecting equipment. In many countries, IDUs are seen as non-people, not entitled access to health services. Creating a supportive environment for IDUs and building their capacity to maintain safe injections therefore becomes even more important. Some realistic strategies to prevent sharing of injecting equipment include: Raising the level of awareness among IDUs of risks associated with sharing Providing information to the client on how they can access sterile injecting equipment (Counsellors can enquire and cross-check whether this is something your centre or institution could assist in.) Providing written information on safe injections including information on cleaning equipment Conducting outreach counselling sessions for IDUs (perhaps education in small groups rather than just one-to-one counselling) Supplies and services The counsellor should be able to suggest sources of reduced cost, high-quality condoms, steps to safe injecting practice and, where possible, sources of necessary supplies to support safe injecting. Services and supplies will depend on availability in each location. Counsellors should compile a list of reliable services that may be distributed to the clients when needed. Reinforcement and commitment The counsellor should review the client s plan for condom use or safe injections in post-test counselling and any subsequent visits to the clinic. The counsellor should ask clients to summarize the pre- and post-test counselling sessions by asking them to review their choices to reduce their risk of HIV/STI infection. These should include the use of condoms and safe injecting. The client should then state the advantages and disadvantages of each choice, and then explain which choice(s) is the most motivational and realistic for the client to implement. Together, the client and the counsellor should re-examine any obstacles which may prevent behaviour change (e.g. access to supplies and services, lack of negotiation skills, etc.) and discuss how these obstacles may be overcome or additional support provided. HANDOUT 85

108 Module 2 Submodule 5 Behaviour change communication: HIV transmission Ongoing support A supportive environment needs to be created to support condom use and safe injections, including choices in condom use (male and female condom), supplies for safe injecting, the provision of print materials, and referral to hotline counselling services. Provision of print materials will depend on their availability. When materials are distributed to the clients, the counsellor should summarize the contents of the materials. Referral to follow-up counselling and support services will also depend on the availability of services in each setting. All referrals should include names of services, addresses, contact numbers and, whenever possible, the names of contact persons in each service. Individual counselling must be supported by institutional or community capacitybuilding programmes. 86 HANDOUT

109 Module 2 Module 2 Submodule 6 Clinical risk assessment and HIV pre-test counselling Handout Submodule 6: Clinical risk assessment and HIV pre-test counselling Session objectives At the end of the session, trainees will be able to: Integrate clinical risk assessment, HIV prevention education and counselling into HIV pre-test counselling Conduct a clinical risk assessment and facilitate the development of a plan for risk reduction Assess risks within the HIV test window period Apply knowledge of basic counselling micro-skills to the context of HIV pre-test counselling Assess an individual s coping strategies and psychosocial support system Facilitate provision of informed consent by the client RISK ASSESSMENT IN HIV/AIDS As per NACO guidelines, every person tested for HIV at a VCTC or for prevention of PPTCT should be provided with pre-test counselling. HIV voluntary testing includes the provision of informed consent, maintenance of confidentiality and post-test counselling. HIV pre-test counselling helps prepare the client to test for HIV, explains the implications of knowledge of HIV, and facilitates discussing ways of coping with knowing one s HIV status. It also involves discussing sexuality, relationships, possible sex- and drug-related risk behaviours, and serves to assist the client in preventing infection or transmission to partners. It also correct myths and misinformation about AIDS. A major component of HIV pre-test counselling is the completion of risk assessment. It is important that the counsellor assess the actual level of risk the client faces as opposed to the client s perception of risk. To fulfil this task, risk assessment requires the counsellor to ask explicit questions about an individual s practices including: Sexual practices Drug-using practices Occupational practices Receipt of blood products, organs or donor semen HANDOUT 87

110 Module 2 Submodule 6 Clinical risk assessment and HIV pretest counselling NEED FOR DETAILED CLINICAL RISK ASSESSMENT A detailed clinical risk assessment can: Promote greater awareness and concern about STIs and HIV: Many clients will have the opportunity to obtain new information about HIV transmission. Provide an opportunity to extend prevention counselling and education: Many clients will require information and support in dealing with their problems and risk reduction issues. Different behaviours have variable risk of HIV transmission. Providing clients with information on the level of risk associated with different risk behaviours can assist them in choosing to engage in lower risk activities. Help in the determination of necessary health investigations: Clients at risk of HIV may also require investigations for STIs, TB and other illnesses. An HIV blood test cannot provide a diagnosis for other conditions. Counsellors can assist clients by referring them to appropriate centres. Provide feedback to the client regarding levels of risk associated with various practices they may have engaged in: Clients either minimize or exaggerate the risks they face. To prepare clients to accept either a positive or negative test result, counsellors must provide realistic feedback on the risk involved. Implications for treatment: A detailed risk assessment can help the physician in determining a post-diagnosis treatment strategy. Clients who are thought to have had a recent seroconversion to HIV will require different medical management to those who are diagnosed with late-stage disease. The client may require additional treatments for other co-existing conditions such as STIs or TB. Based on the client s history, referrals to other services such as family planning may be required. Rationale for detailed assessment Consideration of the window period Consideration of pregnancy and prophylaxis One-to-one education and clarification Clinical decision-making early versus late infection management Other medical investigations Remember however Privacy and confidentiality Explanation of the four principles of modes of HIV transmission (ESES exit, survive, enter, sufficient) when asking for sensitive information Educate first then question about risk Start with the least controversial area or the area of least concern for the client Use open-ended questions Be non-judgemental 88 HANDOUT

111 Guidelines for conducting risk assessment Module 2 Submodule 6 Clinical risk assessment and HIV pre-test counselling Counsellors should be aware of the following when conducting a risk assessment: Provide space to maintain privacy Assure the client of confidentiality See each individual separately do not take a history when another person is present unless consent has been sought and given Assume that the client will be embarrassed Ensure that the client understands the terms used Use clear and simple language Use models or drawings if needed Use neutral language no colloquial, offensive or technical terms Begin with less-confronting issues to put the client at ease Obtain detailed information Discuss all practices with all clients Remember your foundation skills in communication Listening Questioning Non-verbal skills or body language Do not allow your personal values or beliefs to influence the history-taking procedure Four principles of HIV transmission EXIT: The virus should have an exit point where it can leave an infected person s body. SURVIVE: The virus should be in an environment or condition where it can survive. ENTER: The virus should have a point of entry to the bloodstream of another person. SUFFICIENT: There should be enough viral loads or enough amount of the virus to cause infection. The following is a risk assessment questionnaire based on the four principles of transmission that can be used to assess any situation which may or may not put an individual at risk of HIV infection: Did the virus exit the body of the person with HIV? Yes/No Was the virus in conditions where it could survive for a long period of time? Yes/No Did the virus enter another person s body? Yes/No Was the virus in sufficient amount to be transmitted? Yes/No HANDOUT 89

112 Module 2 Submodule 6 Clinical risk assessment and HIV pretest counselling Combined risk education and assessment of self-risk for discussing sensitive issues I need to discuss some things today that perhaps we wouldn t normally discuss with others. I need to discuss these things to be able to: 1. Give you a realistic feedback about your risk of being infected you may be worrying unnecessarily. 2. Ensure you know how to keep yourself and your partner safe in the future different practices carry different risks. 3. See if you have other potential health problems that this test will not identify maybe I will need to do other types of tests. 4. I will give you appropriate suggestions for treatment and care based on the information you provide to me and as per the facilities available. 5. As you can see these are some good reasons for us to talk openly about these things, even though you may not be comfortable doing so. AIMS OF HIV PRE-TEST COUNSELLING To ensure that any decision to take the test is fully informed and voluntary. To prepare the client for any type of result Negative Positive Indeterminate To provide information on risk reduction To provide options for PPTCT To provide an entry point to treatment and care To devise client-focused goals to: develop an individualized risk-reduction plan, facilitate the enactment and sustainment of the client s plan, facilitate the acquisition of coping skills, and facilitate the use of social support systems and improved support mechanisms, personal and familial. Counsellors conducting pre-test counselling are often working under pressure, which limits the time available for each client. Where time is short, it is necessary to concentrate on the task at hand dealing with issues regarding the test itself and the prevention of HIV transmission. Clients often bring other issues into the pre-test counselling session, either knowingly or unknowingly. It may not be appropriate to discuss such issues in a pre-test counselling session. Where this occurs, counsellors should either re-book the client to discuss these issues at another time if appropriate, or refer the client to another service. 90 HANDOUT

113 Module 2 Submodule 6 Clinical risk assessment and HIV pre-test counselling Pre-test counselling presents the counsellor with the challenge of balancing the provision of information, assessing risk and responding to the client s emotional needs. Many people are afraid to seek HIV testing because they fear stigma and discrimination from their families and community. VCT services should therefore always protect an individual s need for confidentiality. Trust between the counsellor and client is essential, and is developed through establishing a rapport, and showing respect and understanding towards the client. The use of counselling micro-skills is important to build a rapport and demonstrate a client-centred approach to the session. It is suggested that counsellors have a copy of VCTC guidelines (NACO) and preand post-test counselling forms which give details of important issues to be covered during counselling. PROCESS OF PRE-TEST COUNSELLING Pre-test counselling is important for the client s understanding of the implications of a positive or negative test result. Pre-test counselling lays the foundation of posttest counselling and test result provision. Pre-test counselling also has an important prevention aspect. The process of pre-test counselling consists of: Establishing a rapport by being genuine and extending a warm welcome to the client Using appropriate micro-counselling skills as and when required Adopting to the client s situation and understanding The procedure consists of the following steps: 1. Introduction and orientation Introduce your name, designation and role, i.e. My name is I am a counsellor at this centre. My role is to discuss and provide support for issues pertaining to HIV and AIDS, and any other concerns that you and your family may have. Assure confidentiality of the issues discussed during counselling, i.e. Whatever we discuss will remain within this centre. As you have used a code number, no one will know you by name. We will also discuss personal and sensitive issues, as they are important for understanding your problem and to provide further support. Outline the counselling process for the client: Content, duration, testing options and procedures, follow-up. The counsellor could say: Our services are for peope who come to this centre without being forced. We will talk for minutes. If you decide to be tested, you will need to wait for to collect your test results which will be provided to you by me. You need to personally come and collect your report. We will further discuss issues that HANDOUT 91

114 Module 2 Submodule 6 Clinical risk assessment and HIV pretest counselling may arise out of your report. At the end of the session I will take down a few notes on our discussion for record-keeping purposes. 2. Determining the client s motivation for the visit 3. Providing information on HIV Understanding the level of knowledge regarding HIV/AIDS Discuss the modes of HIV transmission (four principles: ESES) Correct any misconceptions providing simple and factual information 4. Assess client s risk behaviour 5. Assess risk of STI and TB infection and refer if required 6. Assess previous attempts to reduce risk and develop a risk reduction strategy to adopt safe behaviour Condom demonstration Needle cleaning procedures (if appropriate) 7. Assess the clients coping mechanisms 8. Explain the HIV test 9. Discussing the advantages and disadvantages of the test for the individual 10. Assess the client s preparedness to test 11. Re-affirm the right to decline testing 12. Summarize the session for the client 13. Obtain written informed consent 14. Discussing the importance of spouse or partner disclosure 15. Providing further counselling assistance if required 16. Provide condoms and IEC materials 17. Complete counselling records, client s demographic information, consent form, etc. (forms and registers as required by SACS/NACO) If the client decides to undergo the test: Inform them of the time taken to obtain the HIV test results, the amount of aid manner in which blood (venepuncture, finger prick, etc.) will be taken. Remember to show the client the blood tube/slide collection form and tables which carry their code. If the client decides not to test: Encourage the client to return to the centre when they are prepared. Emphasize risk reduction strategy and safe behaviour practices. 92 HANDOUT

115 Module 2 Module 2 Submodule 7 HIV Post-test counselling Handout Submodule 7: HIV post-test counselling Session objectives At the end of the session, trainees will be able to: Apply their knowledge of basic counselling techniques for post-test counselling Understand the basic requirements for the provision of HIV results Conduct a HIV post-test counselling session for a negative result Conduct a HIV post-test counselling session for a positive result RECAP ON PRE-TEST COUNSELLING The foundation of good post-test counselling is laid during pre-test counselling. If pre-test counselling is done well, the counsellor will already have established a relationship with the client, will have laid down the ground for change in behaviour or planning for the future, and prepared the client for a test result. The client presenting for HIV test results is likely to be anxious, and those receiving positive HIV antibody test results will usually be distressed. It is therefore desirable that the counsellor who provided pre-test counselling also provides post-test counselling. The following issues should be addressed by a counsellor during pre-test counselling: Reason for testing Knowledge of HIV/AIDS Level of understanding of the client Correction of misconceptions Assessment of personal risk Information on HIV test Discussion of possible results Capacity of the client to cope Potential needs and support of the client Personal risk-reduction plan Taking informed consent from the client Making arrangements for follow-up HIV POST-TEST COUNSELLING Objectives of HIV post-test counselling Post-test counselling helps the client understand and cope with the HIV test result. The counsellor prepares the client for the result, gives the result and then provides the client with any further information required, referring the client to other services, HANDOUT 93

116 Module 2 Submodule 7 HIV post-test counselling if necessary. The counsellor further discusses strategies to reduce HIV transmission. The format of the post-test counselling session depends on the outcome of the test result. Where the result is HIV antibody-positive, the counsellor needs to provide the result in a manner the client can comprehend, as gently and humanely as possible, while providing emotional support and assisting the client to develop coping strategies. Counselling is also important when providing an HIV-negative result. While the client is likely to feel relieved, the counsellor must also emphasize and clarify a few important issues like window period and repeat testing, safe behaviour to stay negative. It is important that counsellors be aware of any potential risks of exposure their clients incurred within the window period and encourage to repeat test following window period. The counsellor can assist the client in further formulating a strategy to remain HIV-negative. Key considerations for HIV post-test counselling 1. Cross-check results with the client s records. This should be done by the counsellor before meeting the client. This will ensure that the correct result is provided to the client. 2. Provide results to the client in person. Results should always be provided to the client in person. This not only ensures that the correct person receives the results but also makes sure that the client s confidentiality is protected. It also ensures that the client has an adequate understanding of the result and receives appropriate support. 3. Be aware of the manner in which you call clients from the waiting area. A counsellor may unwittingly convey a test result to a client or others in the waiting area through verbal and non-verbal behaviour. 4. Provision of written test results. As advised by NACO, result are to be provided in writing to clients indicate an HIV-negative or -positive status. General principles for HIV post-test counselling 1. Confirm that the client is ready to collect the test result: Psychosocial condition: Check what was going on in the client s mind before coming to the centre and while waiting for the test result? Comprehension: Ask if the client would like to summarize what was discussed last time. Coping strategies: Ask what they would do if the result is negative? What would they do if it is positive? 2. Be calm when you call the client in for their result 3. Be direct in giving the result 4. Give an explanation of their result 5. Allow enough time for results to sink in 6. Help manage emotional response 94 HANDOUT

117 GUIDELINES FOR THE PROVISION OF NEGATIVE HIV TEST RESULTS Module 2 Submodule 7 HIV Post-test counselling 1. Remember all of the above-mentioned issues. 2. Provide space for the client to react to their test result. 3. Assess client s immediate concerns, e.g. window period and repeat testing. Check for possible exposures in the window period either those undisclosed in pretest counselling or risks which may have occurred since pre-test counselling. Clients may be HIV-negative on a test result but may be in the process of seroconversion that could be highly infectious! 4. Reinforce information on HIV transmission and personal risk reduction. 5. Review and explore any constraints to the practice of safer sex, infant feeding issues (if breastfeeding) and, where appropropriate, safer injecting practices. 6. Referral for anxiety, i.e. worried wells. These are people who fail to believe their results are HIV-negative and often become frequent testers. Please reassure the client again but ask if they have hidden any significant risks within the window period since pre-test counselling sometimes this is the reason why people find it hard to relax after an HIV-negative result. 7. Encourage follow-up to discuss barriers to risk reduction. Counselling issues related to negative results Clients may worry that other people will know that they have undergone a test and pass judgements about their behaviour. It is important that counsellors address these fears with the client and assist them in developing appropriate communication strategies with these people where practical. Some clients may express fear that employers will discover and act on the fact that an employee has undergone a test and therefore should be regarded as a risky person. Counsellors can reassure clients of confidentiality procedures that are in place within their VCT service. Clients leave the service knowing that they have to modify their behaviour but feel that this will be difficult as partners will make it difficult for them. Counsellors are advised to encourage clients to bring their partners/spouse to the centre for couple counselling. Some clients who have shown risk behaviour and tested negative may think they are immune and therefore continue practising unsafe sex. Frequent HIV-negative testers Many clients have difficulty in believing that their test result is actually HIV-negative. This is often the case when clients have engaged in high-risk behaviour (HRB) or in activities that they feel are wrong. For some individuals, a negative test result is not enough to reduce deep-seated anxiety, and they believe that they are actually infected with HIV. Some may question their result and discuss symptoms they believe to be related to HIV infection. If reassurance does not reduce anxiety and repeated requests for retesting occur, referral for specialist psychological/psychiatric/mental health HANDOUT 95

118 Module 2 Submodule 7 HIV post-test counselling follow-up should be considered. These clients may be exhibiting a significant psychological disorder such as an obsessive compulsive disorder or hypochondriasis. GUIDELINES FOR PROVISION OF POSITIVE HIV TEST RESULTS An antibody positive result is likely to be the first of a number of challenges the person will have to deal with in the course of HIV disease. Reactions vary widely, with some clients reacting with severe shock and obvious distress. Others respond with little reaction demonstrating blocked affect. It is also possible that some clients may have anticipated that their result would be positive or have tested previously and therefore react with apparent calm acceptance. Due to the trauma associated with the result, the counsellor needs to offer a safe, empathetic and accepting environment to allow the client to discuss their feelings and thoughts. Sufficient time should be given to clients to focus and explore their emotional reaction. The counsellor should avoid giving false reassurances and should give the client the opportunity to acknowledge their legitimate fears. Clarification of misinformation about the meaning of the result and its implications is essential. This should include a discussion on HIV disease, especially the distinction between HIV and AIDS. Assessment of support available to the client is imperative. In the absence of such support, there should be appropriate referral to counselling services or support groups and clarification of what support your VCT service can and cannot offer on an ongoing basis. It is important that the counsellor enquires and assists the client in formulating immediate concrete plans for returning home from the VCT service and how they will cope during this period. Assess the client for support, and make appropriate referrals as required. Discuss disclosure of results to the partner and spouse testing. Provide information on health, rest, exercise, diet, risk reduction, home-based care and infection-control issues. Ask the client if they have any questions and offer a follow-up session. Provide them written information on HIV infection to read later. FOLLOW-UP COUNSELLING HIV counselling does not end with the diagnosis of the client s HIV status. The knowledge of the HIV test results has certain benefits, but it also has implications for the person s lifestyle. Though HIV-positive individuals have to effect behaviour changes, their partners/spouses also have to make an effort to accept PLHA as part of family and help them lead a comfortable life. To achieve these goals, follow-up 96 HANDOUT

119 Module 2 Submodule 7 HIV Post-test counselling Managing the client s emotional responses Crying: If the client breaks down and starts crying, it is important to let them do so. Give them space to ventilate their feelings. Offering them tissues is a way of telling it is okay to cry. Comment on the process, This must be difficult for you, would you like to talk about it? Would you like to tell me what is making you cry? Anger: Clients might start swearing or exhibit outbursts of anger. Do not panic, stay calm and give clients space to express their feelings. Acknowledge that their feelings are normal and let them talk about what is making them angry. No response: This could be due to shock or denial or helplessness, etc. Check that the client understands the result. Be on the alert for suicidal thoughts. Denial: This could be verbal or non-verbal. Counselling should acknowledge clients difficulty in accepting the information. Let them talk about their feelings. counselling is essential. Knowledge of HIV test results identifies not just one infected person but several affected ones who are their close associates. Some important issues to be addressed are deteriorating self-esteem, impaired problem-solving ability, anxiety, dealing with real and perceived social rejection, immediate sense of loss or grief, anticipation of the worst, depression, and impaired social and occupational functioning. Counselling: micro-skills (Module 2, submodule 3), and the process and stages of counselling (Module 2 submodule 4) should be used effectively during post-test and follow-up counselling. Counselling techniques such as crisis counselling, problemsolving techniques, family therapy, counselling for grief, counselling for psychological distress, and counselling for suicide prevention and other psychiatric conditions should be used as per the presenting problem. You will need to carefully judge how much information should be provided at the post-test counselling session. Most of these issues can be addressed in follow-up sessions. After the session is over, the counsellor should reflect on the following: What made the client feel comfortable? What micro-skills were particularly important for the counsellor to employ? How did the counsellor manage to balance the provision of information with being responsive to the emotional needs of the client? When clients refuse to disclose: Refusal to disclose to the sexual partner may put partners at serious risk of infection. Counsellors should encourage the client to bring their partner in for counselling. HANDOUT 97

120 Module 2 Submodule 7 HIV post-test counselling Assess each case separately for benefits or harms in the event of both disclosure and non-disclosure. BENEFICIAL DISCLOSURE FROM VCT GUIDELINES Counsellors are obliged to maintain confidentiality regarding a person s HIV status. However, they are vested with discretion to decide on the basis of each individual case, whether to inform the HIV-positive person s sexual or needle-sharing partner of the HIV status of their client. Non-voluntary disclosure of an individual s confidential medical information including HIV status can be made by the counsellor under the following circumstances and to the specific persons: To a health care worker involved in treatment, care or support of the PLHAs, where disclosure is medically beneficial for the treatment and to avoid a threat to the life of the infected person. For example, to a psychologist/psychiatrist in case of suicidal ideation or to the client s treating physician (medical disclosure see below) To the spouse/sexual partner or injecting drug partner sharing the same needles when there is a significant risk of HIV transmission (partner notification see below) Medical disclosure In a health-care setting, staff that is directly involved in care for the HIV-positive person such as the attending nurse or the operating physician should be informed of the HIV status by the counsellor after seeking the consent of the client. This is to protect both the rights of the client to confidentiality and the rights of the hospital staff to a safe work environment. The disclosed information must be kept confidential by the attending hospital staff. Partner notification An HIV-positive person should be encouraged through counselling and tools such as role-play to share the positive test result with their spouse, sexual or needlesharing partner(s) and bring the spouse or partner for counselling to a VCTC. This process of helping the client for sharing the test result might take more than one visit. In case of difficulty, the counsellor could contact positive network groups to facilitate disclosure. 98 HANDOUT

121 Module 2 Submodule 7 HIV Post-test counselling As per a Supreme Court decision, if the HIV-positive partner refuses to disclose the HIV status to the spouse or partner it is the obligation of the treating physician or counsellor to disclose the result to the spouse/partner of the HIV-positive person. In case the client does not agree to voluntarily share the HIV status with the spouse or partner the following protocol for partner notification should be adhered to: 1. The HIV-positive person has been thoroughly counselled as to the need for partner notification and encouraged to voluntarily inform the partner or bring the partner to the VCTC for joint counselling. 2. The HIV-positive person has refused to notify or consent to the notification of their partners. 3. An imminent risk of transmission to the partner exists. 4. The HIV-positive person is given advance notice of the intention to notify. 5. The identity of the source client from where the client acquired HIV is concealed from the partner if that is possible in practice. 6. Post-notification follow-up counselling, information and support is provided to the partner and the HIV-positive person to prevent violence, family disruption, etc. OTHER IMPORTANT ISSUES Emphasize early follow-up (if poor follow-up is likely), Discuss health, reproductive and treatment issues, Review the importance of partner testing and notification, and offer assistance if the person needs it, Reiterate the patient s right to privacy and confidentiality with respect to medical information. Follow-up counselling visits Answer questions Assess the impact of the diagnosis on aspects of the client s life Use problem-solving techniques to handle adjustment, interpersonal and emotional issues Use family therapy for resolving issues arising from the HIV status Discuss treatment options Review support services Make appropriate referral HANDOUT 99

122 Module 2 Submodule 7 HIV post-test counselling 100 HANDOUT

123 Module 3 Module 3 Submodule 1 Role of PPTCT in HIV prevention, care and support Handout Submodule 1: Role of PPTCT in HIV prevention, care and support Session objectives At the end of the session, trainees will be able to: Describe information on the epidemiological data related to PPTCT Discuss current strategies for PPTCT Describe the importance of VCT in the PPTCT programme Understand the importance of VCT for both individuals (pregnant women or mothers) and couples EPIDEMIOLOGY OF MOTHER-TO-CHILD HIV TRANSMISSION At the end of 2005, it was estimated that globally 2.3 million children under the age of 15 years were living with HIV/AIDS; children were newly infected in 2005 and many of whom would die before they reach their teens (Table 3.1). The vast majority of children with HIV are infected from their mothers in utero (mainly late pregnancy), at the time of labour and delivery, or after birth through breastfeeding. PTCT of HIV (or perinatal/vertical transmission) accounts for 3.6% of the total HIV infection load in India. In the absence of preventive measures, the risk of a baby acquiring the virus from an infected mother ranges from 15% to 20% in industrialized countries, and from 25% to 45% in developing countries. This difference is largely due to feeding practices breastfeeding is more common and usually practised for a longer period in developing countries than in the industrialized world. Table 3.1 Magnitude of PMTCT challenge in Asia Country India China Myanmar Thailand Cambodia Malaysia 1700 Laos 800 Vietnam 600 Source: UNAIDS 2002 Country Reports No. of children infected HANDOUT 101

124 Module 3 Submodule 1 Role of PPTCT in HIV prevention, care and support Although PTCT of HIV also occurs at the time of delivery or late in pregnancy, between one third and one half of infections occur during breastfeeding. Several factors, not all of which have been fully elucidated, influence the likelihood of the baby getting infected, including viral, maternal, obstetrical, fetal and neonatal factors. High maternal viral load, such as at the time of seroconversion or in advanced disease, is considered to be a major factor in transmission. It is estimated that there are about million HIV-infected persons in India (NACO, 2004). States such as Tamil Nadu, Maharashtra, Andhra Pradesh, Karnataka, Manipur and Nagaland are high-prevalence states (antenatal care [ANC] positivity rate >1%, high-risk group prevalence >5%); a higher seropositivity rate is generally seen among pregnant women. The high-prevalence states of Andhra Pradesh, Maharashtra (including Mumbai with a total poluation of 18 million), Karnataka, Tamil Nadu, Manipur and Nagaland have a total population of 325 million with a pool of infected babies delivered by HIV-positive pregnant women annually. To achieve the UNGASS goal of 2005 for these states, 5427 babies need to be protected and nevarapine (NVP) need to be adminstered to babies likely to be born from HIV-positive mothers. In order to reach them, approximately 2.88 million pregnant women need to be covered. The low-prevalence states (including the vulnerable states) have a combined population of 700 million contributing about HIV-infected babies every year to the national pool of HIV-infected infants. To achieve UNGASS goals for this segment 6000 babies need to be protected through administering NVP to babies, targeting HIV-positive expectant mothers. To reach this figure 6.9 million pregnant women should access PPTCT services, of which only 2.9 million have been reached (NACO, 2005). The number of HIV-positive women is increasing and, with it, the number of babies with HIV infection. UNAIDS estimates that between and children in India under the age of 15 years were living with HIV/AIDS at the end of 2003 (UNAIDS, Global report, December 2004). NACO estimates that there are 27 million pregnancies in India every year and around 30% of deliveries take place in government institutions, 40% in private institutions and about 30% are noninstitutional deliveries. With a 0.7% prevalence rate among ANC attendees, this translates into infected pregnancies per year. At the estimated rate of 30% transmission of HIV from mother to child, there exists a cohort of infected newborns per year. PTCT can be prevented with a combination of low-cost, shortterm preventive drug treatment, safe delivery practices, counselling and support, and safe infant-feeding methods. 102 HANDOUT

125 ADVANTAGES OF VCT FOR PROSPECTIVE PARENTS Module 3 Submodule 1 Role of PPTCT in HIV prevention, care and support VCT is an important entry point for the prevention and care of those with HIV infection or AIDS. VCT provides the opportunity for people to know their HIV status with: quality counselling support to help them to cope with a positive or a negative test result; information and support for preventive measures to be taken for their unborn child; to deal with the related psychological impact including stress and trauma, and to develop coping skills; to prepare young mothers to deal with the social and cultural impact of HIVrelated issues (particularly violence and community rejection); and to establish linkages with medical facilities needed for maternal and child care (including infant-feeding guidelines). The Indian experience As of end 2005, PPTCT services are available in all states at the tertiary and secondary levels and approximately 14% of all pregnant women access such services. However, in 2004, only 3.94% of all pregnant women received HIV counselling and testing and 2.35% of HIV-positive pregnant women received ARV prophylaxis. This shows the need for quality counselling services in PPTCT settings to strengthen the performance of the PPTCT programme. VCT services are effective for both HIV-positive and -negative women. For HIVnegative women, counselling can reinforce the importance of risk reduction such as safe sexual behaviour and negotiating condom usage and can serve as a strong motivating factor to remain uninfected. For women who are identified as being HIV-positive before or during pregnancy, HIV-related counselling can help them make decisions, linking them to antenatal and postnatal care, and further interventions including ARV prophylaxis and options for infant feeding. In addition, it can help HIV-positive pregnant women plan their future and the future of their families. Such counselling can also help a HIV-positive woman to take special steps to maintain her health, not infect her sexual partner, be linked with support groups and services, and make informed choices about her sexual behaviour and future childbearing (UNAIDS 1999, Global Report). VCT programmes for pregnant women benefit from the involvement of men, particularly motivating the sexual partner for seeking VCT services. Conflict and violence among couples after disclosure of HIV status have been reported. VCT and continuing counselling support can minimize these conflicts, violence and even abandonment by reaching out to the spouse and family members of the woman with HIV. HANDOUT 103

126 Module 3 Submodule 1 Role of PPTCT in HIV prevention, care and support In the absence of VCT services, most women have no definitive way of knowing their HIV status until they fall ill with identifiable symptoms of AIDS, or until they give birth to a baby who is diagnosed with HIV/AIDS. Thus, the time available for planning their future and that of their families is limited. THE PPTCT PROGRAMME IN INDIA The PPTCT of HIV has been given a high priority by the Government of India. The programme that was initiated in December 2002 has been scaled up to 488 PPTCT centres by December More than 90% of these centres are spread in 6 highprevalence states, with Tamil Nadu having the maximum (193) centres. The objectives of the programme are: To reduce the proportion of infants affected with HIV by 20% by 2005 and by 50% by To reduce the prevalence of HIV infection among pregnant women in the age group of years by ensuring that 80% of pregnant women accessing ANC services have information, counselling and other HIV prevention services available to them. To reduce MTCT of HIV through effective intervention for HIV-infected women, including VCT and access to ART. Table 3.2 Risk factors for PTCT Strong evidence Maternal High viral load Viral characteristics Advanced disease Immune deficiency HIV acquired during pregnancy Breastfeeding Obstetric Vaginal delivery versus caesarean section Prolonged rupture of the membranes Intrapartum haemorrhage Infant Prematurity Breastfeeding Limited evidence Maternal nutritional status Vitamin A deficiency Anaemia Sexually transmitted infections Chorioamnionitis Frequent unprotected sex Multiple sex partners Smoking Injecting drug use Invasive obstetrical procedures Monitoring Episiotomy Lesions of the skin and/or mucus membranes (oral thrush), including the gastrointestinal tract 104 HANDOUT

127 Module 3 Submodule 1 Role of PPTCT in HIV prevention, care and support MODES OF HIV TRANSMISSION FROM THE MOTHER TO THE CHILD HIV transmission during pregnancy In most HIV-infected women, HIV does not cross the placenta from the mother to the fetus. The placenta actually shields the baby from HIV. However, this protection may break down if the mother: Has viral, bacterial or parasitic (especially malaria) placental infection during pregnancy; Gets infected with HIV during pregnancy, developing high viral load at that time; Has severe immune deficiency associated with AIDS; and Has malnutrition during pregnancy which may indirectly contribute to PTCT. HIV transmission during labour and delivery Infants of HIV-infected mothers are at a greater risk of becoming infected during childbirth. Most infants who acquire HIV during labour and delivery do so by swallowing or aspirating maternal blood or cervical secretions. Factors associated with a high risk of PTCT during labour and delivery are as follows: Long duration following rupture of the membranes (ROM) often in the form of acute rupture of the membranes (ARM), Acute chorioamnionitis (resulting from untreated STIs or other infections), Invasive delivery techniques that increase the baby s contact with maternal blood, e.g. episiotomy, etc. First infant in a multiple birth. HIV transmission through breastfeeding HIV is present in breast milk, although viral concentrations are significantly lower than those in the blood. The risk of PTCT through breastfeeding depends on the following factors: The pattern of breastfeeding: Babies who are exclusively breastfed have a lower risk of being infected than those who are given mixed feeds. Breast pathologies: Mastitis, cracked nipples, bloody nipples and other breast infections. Duration of breastfeeding: The longer it is continued, the higher the risk of transmission. Maternal viral load: The risk is believed to double, 30% if a woman becomes infected with HIV for the first time while breastfeeding. Maternal immune status, advanced AIDS. Poor maternal nutritional status. HANDOUT 105

128 Module 3 Submodule 1 Role of PPTCT in HIV prevention, care and support Timing of HIV transmission during breastfeeding Transmission can take place at any point during breastfeeding. About 70% of postnatal transmissions occur within the first 4 6 months. HIV has been detected in colostrum and mature breast milk but the relative risk of transmission has not been established. The risk is cumulative the longer the duration of breastfeeding, the greater the additional risk. The overall risk of transmission via breastfeeding is about 15% over months of feeding. Table 3.3 The four-prong model for prevention of PTCT advocated by WHO/UNICEF/UNAIDS/UNFPA Strategy Prong I: Primary prevention of HIV infection among women of child-bearing age and young people Prong II: Prevention of unintended pregnancy among HIVinfected women Prong III: Prevention of HIV transmission from an infected mother to her infant Prong IV: PPTCT plus providing care and support to HIV-infected women and their families Key components Behaviour change interventions in the general population and couples Information, education and counselling on HIV prevention and care Better management of STIs Reduction of unsafe transfusions Addressing contextual factors that increase a womanês vulnerability, i.e. stigma and discrimination Condom promotion: Safe sex practice Encouraging partners to be involved in safe sex discussions and VCT by couples Note: Providing counselling to either HIV-negative or serodiscordant couples has been shown to be a highly effective primary intervention strategy. Increase the number of women who know their HIV serostatus information, education and counselling on HIV prevention and care, including approach to PPTCT Counselling of women and their partners to enable informed choice with regard to potential future pregnancy Condom promotion as a valuable tool for family planning Referral to family planning and other counselling services as necessary (knowledge of locally available counselling resources is therefore essential) Note: Women who test HIV-positive in early pregnancy can make the decision to either continue with the pregnancy or to elect for termination when it is legal and safe. Ensure that HIV-positive women have access to antenatal care system and PPTCT services Provision of ARV with counselling to HIV-infected pregnant women and their newborns Safe delivery practices Counselling and support for safer infant-feeding practices Medical and nursing care: VCT, OIs prevention therapy, HAART and palliative care Psychosocial support: Counselling, spiritual support, follow-up counselling and community support Human rights and legal support: PLHA participation and stigma/discrimination reduction Socioeconomic support: Material support, microcredit and food support 106 HANDOUT

129 Module 3 Submodule 1 Role of PPTCT in HIV prevention, care and support INTEGRATION OF VCT INTO THE EXISTING MATERNAL AND CHILD HEALTH SYSTEM VCT at the time of delivery what are the issues? While it is best if women receive VCT through ANC services, many women are present for delivery without having received ANC from that facility. On several occasions, women do not receive PPTCT interventions due to nonavailability of services, and the problem of testing is presented during labour. Most women in these circumstances will not know their HIV status. Many settings utilize rapid HIV tests when a woman is in labour. A woman who is already in labour can learn of her HIV status and receive ARV prophylaxis to prevent PTCT. However, it can be difficult to offer counselling, obtain informed consent for testing, or give the result of a positive HIV test to a woman in labour. If time permits for pre-test counselling, the counsellor needs to make sure that the pregnant woman understands why VCT is important for her baby and that she is ready to make a decision about testing. Rapid HIV testing is used for preliminary diagnosis. The policy offering ARV prophylaxis varies according to the programme. Some programmes offer ARV based on preliminary HIV diagnosis by approved rapid tests because of the high sensitivity and specificity of these tests with low false-positive (~1%) rate. Pregnant woman need to make choices for themselves and their babies to take medication if a rapid test is positive. Subsequently, on the next available working day, the woman can be subjected to two other rapid tests to confirm the diagnosis. Post-test counselling can be done comprehensively after HIV infection is confirmed, most likely in the postpartum ward. Infant follow up Under the programme, HIV testing of the baby is done >18 months with three HIV rapid tests in the VCTCs. This is ensured by counselling and follow up of the mother in the PPTCT centre and paediatrician in the ART centre. As the duration of follow up is long, less than 10% babies are being followed up at 2 months. This follow up progressively reduces to 1 2% at 12 and 18 months. Basic PPTCT regimen The basic PPTCT Regimen being followed in the National PPTCT programme is: Administration of single dose nevirapine (200 mg tablet) to the HIV-positive mother during early labour. Administration of single dose neverapine (2 mg/kg body weight) to the baby within 72 hours of birth. HANDOUT 107

130 Module 3 Submodule 1 Role of PPTCT in HIV prevention, care and support PPTCT intervention package 1. Ante-natal care 2. Group education/pre-test counselling 3. HIV testing: After informed consent 4. Post-test counselling 5. Institutional delivery: Safe birth practices 6. Administration of nevirapine to the women during labour 7. Administration to the baby of single dose of suspension nevirapine (2 mg/kg) within first 72 hours 8. Counselling of mother for infant feeding options PPTCT Plus 9. Care and support PPTCT Plus 10. Follow-up PPTCT Plus Nevirapine administration Mother Screened for contraindications Single dose tablet of 200 mg during first stage of labour Baby Single dose of suspension within first 72 hours Nevirapine courtesy Donation from CIPLA 108 HANDOUT

131 Module 3 Module 3 Submodule 2 Counselling for the prevention of parent-to-child transmission of HIV Handout Submodule 2: Counselling for the prevention of parent-to-child transmission of HIV Session objectives At the end of the session, trainees will be able to: Understand the aims of pre- and post-test counselling for pregnant women. Identify the concepts and impart the skills needed to provide effective counselling to women and their partners for prevention of parent-to-child transmission (PPTCT). PRINCIPAL CONCEPTS AND ROLE OF A COUNSELLOR IN PPTCT Voluntary counselling and testing (VCT) in PPTCT is a dialogue between a client who is a prospective parent and counsellor. The process seeks to serve at least three purposes: 1. Informative To ensure that the client has a correct understanding of the facts that will enable them to take informed decisions. Education on HIV prevention should be included as a part of routine antenatal care (ANC): Knowledge of and information (basic facts) on HIV/AIDS in pregnancy Basic facts on issues related to HIV/AIDS, PPTCT and modes of transmission The importance and objectives of VCT for individuals and couples who are prospective parents Information related to access to services available for treatment, care and support Information related to referrals and linkages Knowledge about delivery options, infant feeding and antiretroviral therapy (ART) prophylaxis 2. Supportive To help the client take voluntary, informed decisions about HIV/AIDS prevention and care, and to provide support for the feelings/emotions of the client as needed. Voluntary, informed decisions include: HIV testing Planning or termination of pregnancy if desired by the couple PPTCT intervention, e.g. delivery options, entering an antiretroviral (ARV) programme, infant-feeding options HANDOUT 109

132 Module 3 Submodule 2 Counselling for the prevention of parent-to-child transmission of HIV Disclosure issues 3. Preventive The counsellor increases the client s awareness about measures they can take to protect themselves and others from HIV infection, and emphasize the possibility of preventing the transmission of HIV from the mother to the child. Client can adopt to ensure safe delivery of babies and follow up care for both mother and baby including immunization, nutrition and feeding options. Risk assessment and risk reduction Prevention of re-infection and spread of infection Assist clients in understanding their role in PPTCT in the context of the stage of impending or current parenthood, starting from the client s present condition PSYCHOSOCIAL CONSEQUENCES OF HIV INFECTION AMONG WOMEN These are detailed below: 1. Women often discover their status by accident, after the spouse or partner or child is already symptomatic; this presents the woman with a double crisis. 2. Women are often wrongly accused of having brought the infection into the family; this often causes conflicts with her spouse/family members and may lead to domestic violence. 3. The woman s infection may be the first indication that she or her partner has had another partner, and disclosure of this within the family unit may be traumatic. 4. Fear of social stigma and abandonment, and feelings of extreme isolation and loneliness may compel a woman to keep her condition secret. 5. Fear of violence may compel a woman to keep from disclosing her infection to her partner. 6. Infected women may be extremely concerned about the welfare of their children and underestimate their own needs. 7. Infected women may have to take tough and often painful decisions about their personal lives. Such decision include: Who will take care of their children after their death? Whether to take prophylactic ARV drugs Whether to breastfeed Whether to disclose their HIV status to their partners/family members In case the spouse is HIV-negative, dealing with disclosure is crucial for women for fear of abandonment and violence How her in-laws will react and the effect on family status, i.e. status of the woman in the family and of the family in the community. Whether to avoid pregnancy and contraceptive options Whether sexual relations should continue and whether condoms will be used 110 HANDOUT

133 Module 3 Submodule 2 Counselling for the prevention of parent-to-child transmission of HIV 8. There are some reports that the incidence of postnatal depression is higher in HIV-positive women. Reports from counsellors in some parts of India indicate that women found to be HIV-positive before their spouse is tested are victimized and labeled as having brought the infection into the family. Often, husbands do not accept counselling and testing, and the woman is abandoned. Women also report experiencing violence from family members. EMOTIONAL REACTION OF HIV-INFECTED WOMEN Women may require counselling assistance to cope with the following psychological reactions, which could surface during the pre- and post-test counselling sessions: 1. Anger towards the person who may have infected her 2. Grief at her loss of health and status, changed body image and sexuality, the possibility of having to give up her children, and of dying and leaving her children orphaned. 3. Shock at being HIV-positive as the client had not anticipated that she may contract HIV infection 4. Guilt relating to how she may have been the cause of her child s illness and burdened family members with caring for a sick person. 5. Fear of stigma, abandonment, social rejection and loss of self-esteem 6. Postpartum depression 7. On many occasions women have been reported to not react at all on hearing of their HIV-positive status. This could be due to the fact that the information has not been processed due to ignorance or shock. Cultural and socioeconomic factors demanding attention In most Indian marriages, decisions on issues related to reproductive health are not limited to women and their spouses. Family members, including members from the extended family, are involved in many health-related personal and social decisions. SKILLS NEEDED TO PROVIDE EFFECTIVE COUNSELLING To be able to develop the required basic and specific skills, a counsellor should be guided by certain principles. These principles promote the aims of counselling, and guide the conduct of the counsellor and the help given to the patient. The process of VCT in PPTCT HIV pre-test counselling HIV pre-test counselling presents the counsellor with the challenge of balancing the provision of information, assessing the risk and responding to the clients emotional needs. Many people are afraid to seek HIV testing because they fear stigma and HANDOUT 111

134 Module 3 Submodule 2 Counselling for the prevention of parent-to-child transmission of HIV discrimination from their families and the community. VCT services should therefore always protect an individual s need for confidentiality. Trust between, the counsellor and the client is essential, and is developed through the counsellor establishing a rapport, and showing respect and understanding. PARTNER DISCLOSURE-RELATED VIOLENCE The individual benefits that women may receive from sharing HIV test results with their partners need to be balanced against the potential risks that an individual may face when she discloses her status. Counselling strategies to reduce partner disclosure-related violence Fear of violence is a major barrier for disclosure of their HIV-positive status by women to their male partners. This may be a justified fear. Counselling strategies to follow are: 1. Create opportunities for the sexual histories of couples to be taken separately. This not only ensures accurate risk assessment but also offers the counsellor an opportunity to foresee potential relationship difficulties that may arise from the disclosure of an HIV-positive result. This could be facilitated with referrals to a voluntary counselling and testing centre (VCTC) as it may not be possible during counselling for PPTCT to involve the male partner/husband. 2. Assessment: In addition to engaging in the standard process of disclosure counselling, it is important to assess the couple s history and potential for violence, preferably at both the pre- and post-test counselling sessions. This should be done by interviewing women separate from their partners and reassuring them of confidentiality. 3. Where the threat is less tangible or there is little to suggest a real threat but the client is anxious, encourage disclosure of the results in the presence of the counsellor. The counsellor could facilitate disclosure, and violence may not occur in a therapeutic atmosphere. 4. Develop a disclosure plan with the client and include planning for an aggressive response. 5. The client should be asked to rehearse the disclosure using role-play during the counselling session. 6. Maintain a referral directory of welfare agencies offering support to women, e.g. shelters for victims of domestic violence. Various methodologies are used in the PPTCT programme to provide information during pre-test counselling. These include individual counselling, group information, information given through video sessions, and using other information, education and communication (IEC) material. The method used depends on the number of people accessing the service. 112 HANDOUT

135 Module 3 Submodule 2 Counselling for the prevention of parent-to-child transmission of HIV Pre-test counselling for PPTCT, apart from the regular pre-test information, should also include general information about care during pregnancy. The importance of regular visits to the ANC clinic, balanced diet, rest and other medications should be emphasized. Counsellors should also emphasize safe sex practices during pregnancy, and motivate the spouse or partner to undergo testing. The counsellor should explore the risk of depression, suicide and violence that may arise following the client s results. HIV post-test counselling The content of the HIV post-test counselling will depend on the test results. The foundation of good post-test counselling is laid during pre-test counselling. If pretest counselling is done well, the counsellor will have already established a relationship with the client and will have laid the ground for any necessary changes in behaviour or planning for the future, and will know the client quite well. The client presenting for HIV test results is likely to be anxious, and those receiving positive HIV test results will usually be distressed. It is therefore desirable that, where possible, the counsellor who provided pre-test counselling also provide posttest counselling. Clients should also be encouraged to revisit the PPTCT centres for the interventions available to reduce the risk of transmission to the fetus. Transmission of HIV from mother to child can be prevented through the administration of ARV prophylaxis. Assist the mother to take an informed decision regarding the following: use prophylactic ARV drugs to prevent the baby from getting infected. select feeding options, as well as explore the pros and cons of breast milk and breast-milk substitutes. plan the delivery with the obstetrician. practise safe sex to reduce the likelihood of further re-infections. Counselling women to make an informed choice requires a deep understanding of social issues, compassion, knowledge of their household situation, the ability to communicate complex concepts, and the ability to emotionally support women in taking a decision that affects themselves, their children and their entire family. Follow-up counselling Disclosure and other supporting issues in subsequent counselling sessions with HIVpositive persons also provide an opportunity to protect sexual partners and to plan for the future from an informed position deciding on marriage and childbearing, and preparing children and the family for the progression of the disease to death. HANDOUT 113

136 Module 3 Submodule 2 Counselling for the prevention of parent-to-child transmission of HIV Table 3.4 Utopian framework for VCT within ANC/maternal and child health (MCH) service delivery Pregnant women who access antenatal services who deliver within a health facility with a health care personnel present (including a traditional birth attendant [TBA]) receiving health education and pre-test counselling for HIV who consent to HIV testing who receive results and post-test counselling who test HIV-positive who test HIV-positive and are offered ARVs for PPTCT who test HIV positive and take ARVs and who receive a dose for protecting the baby within the efficacious time frame mother baby pairs who have access to and are offered comprehensive follow-up care and support OTHER COUNSELLING ISSUES Breastfeeding and ARVs Most HIV-positive women live in deprived conditions, and lack access to clean water and sanitation. This limits their ability to employ safe breast-milk substitutes. Research on how to make breastfeeding safer is a high priority. Results from one study suggested that exclusively breastfed children are less likely to acquire HIV than those receiving mixed feeding (breast milk along with other foods). Meanwhile, studies are under way to determine whether ARV provided to a mother or infant during the breastfeeding period can prevent the transmission of HIV. All HIV-positive pregnant women should be enabled to make an informed choice on infant feeding options. A general summary of the UNICEF/WHO guidelines on infant feeding is given below: For HIV-negative or women of unknown status Exclusive breastfeeding should be recommended, promoted and supported for six months, followed by adequate weaning and continuation of breastfeeding for as long as possible. For HIV-positive mothers Breast-milk substitutes (formula or sterile animal milk) when replacement feeding is acceptable, feasible, affordable, sustainable and safe, otherwise exclusive breastfeeding is recommended during the first months of life with early cessation. Breastfeeding should be discontinued as soon as feasible in order to minimize the risk of transmission of HIV 114 HANDOUT

137 Module 3 Submodule 2 Counselling for the prevention of parent-to-child transmission of HIV Always consider local customs, the individual woman s situation, and the risks of replacement feeding (which can include an increased risk of other infections and malnutrition). Counselling of couples The HIV status of the woman s partner is a critical part of the family s decisionmaking framework. Involving the partner in HIV test-related counselling can help ensure that he is supportive of his partner s dilemmas and choices related to the infection such as, infant feeding and family planning. Women coming for HIV/AIDS counselling should be encouraged, but not forced, to bring their partners. Counsellors need to have some knowledge of how to work with couples. In cases where it is not possible to involve the spouse/male partner, women should be encouraged to visit the VCTC so that the issue of disclosure to the partner becomes easier. Rationale for couple counselling Some people seek counselling as a couple because they recognize that their problems are rooted in their relationship rather than attributable to individual issues. A change in either partner s sexual behaviour is bound to affect the other partner. When couples work in supportive partnership they are bound to succeed more than if one partner is kept in the dark. Disclosing HIV results to the other partner, which is usually a difficult task for most couples, is better handled if both agree to be seen as a couple. Couples are better able to cope with decisions such as whether or not to plan a child, terminate a pregnancy and breastfeed the baby if they are seen and supported together. Guidelines for working with couples 1. Build a relationship Create a conducive and trusting relationship with the couple. The counsellor should ensure that they follow the basic counselling skills while working with couples. In couple counselling, the counsellor should never be biased in favour of an individual. The goal has to be protecting the marriage and helping the clients make a collaborative effort to deal with various issues related to HIV. A nonjudgemental attitude facilitates disclosure and is more likely to result in a positive outcome. Let both know that there will be equal opportunity for airing their views. Let both know that their individual opinions are important. Let the dominant-looking partner start, especially if it is the husband, as this may influence their behaviour once they get home. However, undue importance should not to be given to the dominant partner and the counsellor HANDOUT 115

138 Module 3 Submodule 2 Counselling for the prevention of parent-to-child transmission of HIV should handle the situation of emotional dominance firmly with a nonjudgemental approach (the counsellor can say, I have heard you and now it is essential to listen to other partner s point of view ). Pay attention to both their verbal and nonverbal communication. Try politely to draw out the silent partner to share feelings and options. Set aside your values, prejudices and beliefs and work with those of the couple. 2. Check their understanding of HIV/AIDS. 3. Explain the process of testing and the meaning of the test results, both positive and negative. Discuss the process of receiving the results: How do they want to get their results? Neither will be given the results of the other; either they get their results together or separately, and then negotiate a way of informing their spouse or partner. Ideally, they should get the results together. However, it is important to gauge the issue of violence and discordant outcome, and accordingly take a decision on individual/couple involvement for providing the test result. At this point also mention: the possibility that their results may differ (discordant results), e.g. the husband is HIV-positive and the wife HIV-negative, or vice versa and the possibility of testing HIV-negative during the window period. what will it mean to them if they do not get the same result? Ask each one to explain the meaning of the result and how they will cope. How will they protect themselves? What will be the advantages of knowing their status as a couple? Any disadvantages? Who else might be affected by the outcome of their test? If the clients are pregnant women and their partners, discuss issues of PPTCT and availability of appropriate interventions. 4. Check their willingness to have the test done. Table 3.5 Potential benefits and risks of disclosure of HIV serostatus to sexual partners Potential benefits Increases opportunities for receiving social support and long-term home-based care, as well as medical and nutritional support for the mother and support for infant-feeding adherence Improves access to necessary medical care Increases opportunities to discuss HIV risk reduction with partners Increases opportunities to carefully and thoughtfully plan for the future Potential risks Loss of economic support Blame Abandonment Physical and emotional abuse Discrimination Disruption of family relationships It is reported that if the spouse/partner of an HIV-positive woman is seronegative, the woman has to face far greater difficulties dealing with social consequences as well as in getting support from the spouse/partner. 116 HANDOUT

139 Module 3 Module 3 Submodule 3 Case management in the prevention of parent-to-child transmission of HIV Handout Submodule 3: Case management in the prevention of parent-to-child transmission of HIV Session objectives At the end of the session, trainees will be able to: Understand the effects of HIV on pregnancy Describe how ART is used for the prevention of HIV infection Describe the various drug regimens for prevention of mother-to-child transmission (PMTCT) used during pregnancy, intrapartum and postpartum, including short-course ART Describing the postpartum care of HIV-infected women and those with unknown HIV status EFFECTS OF HIV ON PREGNANCY Some studies in Africa suggest that HIV may have an adverse affect on fertility in both symptomatic and asymptomatic women. When comparing changes in CD4 count/percentage over time, there is no difference between HIV-positive women who are pregnant and HIV-positive women who are not pregnant. HIV does not appear to significantly cause congenital abnormalities or an increase in the incidence of spontaneous abortion. During the early stages of HIV infection, pregnancy does not accelerate progression of the disease. Late HIV disease may affect the outcome of pregnancy, i.e. poor fetal growth, preterm delivery, low birth weight, and prenatal and neonatal death. Regarding common HIV-related problems, there is no difference in the management of pregnant and nonpregnant women except drug management. MEASURES TO REDUCE TRANSMISSION OF HIV During labour and delivery Delay rupture of the membranes (ROM). Carry out minimum digital examinations after ROM. Cleanse the vagina with hibitane or other viricides, if available. Reduce the use of assisted delivery with forceps. Reduce the use of episiotomy. Elective caesarean section protects better against PTCT than vaginal delivery. If not already on ART, give nevirapine. HANDOUT 117

140 Module 3 Submodule 3 Case management in the prevention of parent-to-child transmission of HIV After delivery Avoid mechanical nasal suction. Clean the newborn immediately of all maternal secretions and blood. Support safe infant feeding (according to national guidelines it is the mother s choice to put the infant to the breast within 30 minutes of birth). If breastfeeding is chosen as an option, encourage exclusive breastfeeding and advise early cessation (up to six months) or breast-milk substitutes. Advise milk substitutes where conditions are suitable and cessation of breastfeeding after six months. ARV therapy and PPTCT ARV therapy can produce a significant reduction in mother-to-child transmission of HIV Studies showed that administration of zidovudine to women from the 14th week of pregnancy and during labour to the newborn decreased the risk of MTCT by nearly 70% in the absence of breastfeeding. A shorter zidovudine-alone regimen starting from the 36th week of pregnancy was shown to reduce the risk of transmission of HIV at 6 months by 50% in nonbreastfed infants and by 37% in those who were breastfed. A short course of nevirapine (HIVNET 012) has been shown to reduce the risk of transmission by 47%. This protocol is the most commonly used because of its demonstrated efficacy in clinical trials in reducing PTCT low cost ease of use in PPTCT programmes. Women on treatment with ARVs for HIV infection have been shown to have a very low transmission rate if their viral load is <1000 copies/ml. WOMEN FIRST DIAGNOSED WITH HIV INFECTION DURING PREGNANCY Women in the first trimester may consider delaying initiation of ART Weigh the severity of maternal HIV disease, and the potential benefits and risks of delaying ART until after first trimester For women who are severely ill, the benefit of early initiation may outweigh the theoretical risk to the fetus; in these cases, ART initiated with drugs such as zidovudine, 3TC, nevirapine or NVP is recommended 118 HANDOUT

141 Module 3 Submodule 3 Case management in the prevention of parent-to-child transmission of HIV HIV-INFECTED WOMEN WHO BECOME PREGNANT If on ART, options are Suspend therapy temporarily during the first trimester Continue the same therapy Change to a different regimen If not on ART prophylaxis (PPTCT) Issues to be considered Gestational stage of the pregnancy Severity of maternal disease need for ART on PPTCT Tolerance of regimen during pregnancy Potential for adverse fetal effects PPTCT IN HIV-INFECTED ARV can reduce the concentration of HIV in maternal fluids, tissues and breast milk, which leads to a decreased risk of exposure of the infant to maternal HIV during the intrauterine, intrapartum and postpartum periods. Nevirapine Nevirapine (NVP) is an ARV drug that reduces the chances of a woman transmitting the virus to her baby. The usefulness of ARV drugs for PMTCT was demonstrated in 1994 and has now been adopted as part of the standard care of HIV-infected pregnant women in most countries. This intervention is an important component of the Government of India s National AIDS Control Programme. It is a simple two-dose regimen (one dose each to the mother and the newborn) to be taken orally (under supervision). A 200 mg pill is given to the mother with onset of labour and drops given to the baby (2 ml/kg body weight). It is inexpensive, does not require refrigeration, and no significant side-effects have been noticed, either in a clinical or laboratory setting, after single-dose administration. Adverse reactions to nevirapine have been observed in some cases. These allergic reactions include rash, erythema multiforme, vomiting, diarrhoea, hyperkalaemia or hypokalaemia, tachycardia, systolic hypertension and hepatotoxicity. The current national programme on PPTCT uses single dose of NVP to mother and baby. Nevirapine gets rapidly absorbed and crosses the placenta efficiently after a single oral dose of 200 mg is given to the mother. In infants, the median half-life ranges from 45 to 72 hours for the elimination of maternal nevirapine, and 37 to 46 hours for a single 2 mg/kg neonatal dose (HIVNET 012 regimen). Metabolism of nevirapine to hydroxylated compounds occurs via cytochrome P450 in the liver; these are further HANDOUT 119

142 Module 3 Submodule 3 Case management in the prevention of parent-to-child transmission of HIV metabolized by glucuronide conjugation. Elimination of nevirapine and its metabolites is mainly through urine. Research in Uganda (HIVNET) and later in South Africa showed that a single dose of nevirapine given during labour and a single dose given to babies hours after birth decreased the transmission rate by 50% in babies who were 3 months old and were breastfed. This regimen of single-dose intrapartum/newborn nevirapine prophylaxis was considered ideal for PPTCT in developing countries for the following reasons: It is a single drug given at the onset of labour. It is cheap and simple. Mothers can take the medication if they want to deliver at home. Mothers can still breastfeed. In 2000, the manufacturers of nevirapine, in partnership with the Government of India and the United Nations system, offered the drug free of charge to developing countries for a period of five years. Findings on ARV prophylaxis for PPTCT in countries with limited resources ARV prophylaxis has higher efficacy in nonbreastfeeding settings Short-term use of zidovudine antepartum is effective, but less than long antepartum therapy. Intrapartum/newborn prophylaxis with zidovudine/3tc or nevirapine can also reduce transmission, although less than that with three-part antepartum intrapartum newborn regimens. Persistent (though decreased) efficacy was seen with short-course zidovudine and nevirapine regimens among month breastfed infants. The addition of single-dose nevirapine may provide added benefit to short-course zidovudine (study of nevirapine resistance is needed) When maternal antepartum/intrapartum ARV is not received, post-exposure infant prophylaxis should be given; however, the best regimen is yet to be defined. A pregnant HIV-positive woman who opts to breastfeed should still be given ARVs for PPTCT, although the efficacy of ARV in preventing transmission will be decreased. If short-course zidovudine is used, the efficacy is reduced from 50% in nonbreastfed infants to 37% at 3 months of breastfeeding. With nevirapine, the efficacy at 3 months of breastfeeding is 50%. In babies who are breastfed longer, the efficacy diminishes with the duration of breastfeeding. SHORT-COURSE ARV PROPHYLAXIS AND TREATMENT POSTPARTUM Short-course ARV regimens that do not fully suppress viral replication may be 120 HANDOUT

143 Module 3 Submodule 3 Case management in the prevention of parent-to-child transmission of HIV associated with the development of drug resistance to ARVs. The Ugandan HIVNET 012 study of single-dose intrapartum/newborn nevirapine for PMTCT found that 19% of the women developed resistance to the drug. This was associated with vaginal delivery, HIV viral load and CD4 cell count. Based on current information (until further data are available), prior administration of short-course zidovudine/3tc or single-dose nevirapine for PMTCT should not preclude the use of these agents as part of a combination ARV drug regimen initiated for the treatment of these women. ADHERENCE TO THERAPY DURING PREGNANCY AND POSTPARTUM Adherence is more difficult in pregnant and postpartum women. Obstacles to adherence: morning sickness, gastrointestinal upset, fears about ARV harming the fetus, physical changes in the postpartum period and demands of caring for a newborn. Many of the common minor complaints may be managed with simple drugs during pregnancy. If the need to temporarily discontinue therapy during pregnancy arises, stop all drugs and then re-start all simultaneously. This reduces the potential for emergence of resistance. It is important to provide additional support for monitoring adherence to therapy during the ante- and postpartum periods. IMMEDIATE POSTPARTUM CARE OF WOMEN WITH UNKNOWN HIV STATUS AND HIV-INFECTED WOMEN Testing and counselling after childbirth Although testing the mother for HIV after childbirth is too late to modify any labour and delivery procedures, it can still make a difference. The results of an HIV test may influence the mother s choice of infant-feeding options and could initiate postexposure ARV prophylaxis for the child, if needed. If otherwise eligible, she can also opt for ART as part of the care and support programme. Postpartum care of women with unknown HIV status Women whose HIV status is unknown should receive the same programme of postpartum care as HIV-infected women (outlined below). They should be encouraged to undergo testing for HIV and to follow recommendations for feeding their infants. Postpartum care of HIV-positive women Postpartum care of HIV-positive women can follow routine protocols, but several areas require additional attention. HANDOUT 121

144 Module 3 Submodule 3 Case management in the prevention of parent-to-child transmission of HIV Feeding the newborn Women should be counselled on infant-feeding options. When replacement feeding is AFASS, i.e. acceptable, feasible, affordable, sustainable and safe, avoidance of all breastfeeding is recommended. Otherwise, exclusive breastfeeding is recommended for the first six months of life with early and abrupt cessation. Counselling should include information about the risks and benefits of various infant-feeding options, and guidance in selecting the most suitable one. The mother can choose replacement feeding or breastfeed exclusively to reduce the risk of PTCT during the postpartum period. New mothers should choose feeding options before they leave the clinic or hospital after childbirth, and they should receive support in making and executing their decisions (see Module 3 Submodule 3: Infant feeding in the context of HIV infection). Signs and symptoms of postnatal infection HIV-infected women may be at increased risk for postnatal infection, especially if the disease is in a more advanced stage. Women should be given information before they leave the clinic or hospital about the early symptoms of infection and where to seek treatment. Symptoms can include the following: Burning during urination Fever Foul-smelling lochia Cough, sputum, shortness of breath Redness, pain, pus, or drainage from the incision or episiotomy Severe lower abdominal tenderness Women should also be instructed on perinatal and breast care, and potential problems. It should be explained that lochia and blood-stained sanitary pads or other material can be infectious, and mothers should be taught the proper method of disposing of potentially hazardous materials. Family planning Contraception and child spacing should be discussed with every woman antenatally and again in the immediate postpartum period. The main family planning goals for HIV-infected woman are prevention of unintended pregnancy appropriate child spacing, which can help reduce maternal and infant morbidity and mortality. 122 HANDOUT

145 Continuing care Module 3 Submodule 3 Case management in the prevention of parent-to-child transmission of HIV HIV-infected women should be encouraged to seek continuing health care in the following areas: Regular gynaecological care, including Pap smears, if available Regular HIV/AIDS care: medical follow up; where possible, women should receive referral to a specialist in HIV/AIDS care including ARV Nutrition and dietary care Family planning services Feasibility studies carried out with support from UNICEF India have demonstrated that it is possible to implement a cost-effective approach to the PPTCT programme in the public sector in India. The PPTCT Feasibility Study using the drug zidovudine was conducted from March 2000 to September 2001 in 11 medical colleges. A second feasibility study using nevirapine commenced in October 2001 in the same medical colleges and ended in September Counselling of pregnant women was carried out prior to their undergoing an HIV test. If found HIV-positive, they were offered counselling, regular antenatal monitoring and supervised delivery. The women were then introduced to support groups. The results of the study clearly established the effectiveness of PPTCT interventions by reducing the transmission rate to about 8% 9%. As knowledge and experience increases globally in PMTCT, the guidelines and PMTCT regimes may change. Updated information will be available on the WHO website. HANDOUT 123

146 Module 3 Submodule 3 Case management in the prevention of parent-to-child transmission of HIV 124 HANDOUT

147 Module 3 Module 3 Submodule 4 Infant feeding in the context of HIV infection Handout Submodule 4: Infant feeding in the context of HIV infection Session objectives At the end of the session, trainees will be able to: Understand the advantages and disadvantages of breast milk and nutrient contents of animal milk Understand why mixed feeding is harmful Understand methods that can prevent transmission of HIV through feeding options Describe current global recommendations for infant feeding in the context of HIV infection Define the main options for infant feeding, and the benefits and risks of each Describe and follow the steps for counselling HIV-positive mothers about infant feeding Understand the importance of postnatal follow up and support required for appropriate infant feeding Describe complementary feeding after six months of age BASIC FACTS ABOUT MALNUTRITION, INFANT FEEDING AND CHILD SURVIVAL The 2002 WHO World Health Report provides the following data on malnutrition, infant feeding and child survival: Worldwide, malnutrition is the underlying cause of about 60% of deaths in children younger than 5 years of age; in Africa the figure is about 50%. Being underweight was associated with 3.7 million deaths worldwide in the year 2000, mostly of children younger than 5 years of age. Poor feeding practices, such as those that provide insufficient nutrients and energy or contribute to diarrhoea, are a major cause for being underweight and of morbidity in children. Counselling and support for infant feeding can improve feeding practices and in turn, prevent malnutrition and reduce the risk of death in children. For HIV-infected mothers, counselling and support will also help prevent PPTCT. GLOBAL RECOMMENDATIONS FOR INFANT AND YOUNG CHILD FEEDING ARV prophylaxis administered to the mother during labour and to the child shortly after birth has substantially reduced PTCT of HIV during labour and childbirth. ARV HANDOUT 125

148 Module 3 Submodule 4 Infant feeding in the context of HIV infection prophylaxis, however, does not provide long-term protection to the infant. It is estimated that 10% 20% of infants breastfed by HIV-infected mothers remain at risk of acquiring HIV infection. Infant-feeding practices that carefully follow national or WHO guidelines can reduce the likelihood of PTCT through breastfeeding, and reduce the risk of infant death from diarrhoea and other childhood infections. WHO infant-feeding recommendations for HIV-negative mothers and mothers with unknown HIV status WHO recommends exclusive breastfeeding (see definition in box) for six months and continued breastfeeding for up to two years or beyond for the health, nutritional and psychosocial benefits it provides to mothers and their infants. Women should also be given support to breastfeed according to the WHO recommendations introduce nutritionally adequate and safe complementary family foods after the infant reaches six months of age, while continuing to breastfeed for two years or beyond. Mothers should also receive information about the risk of becoming infected with HIV late in pregnancy or while breastfeeding. Women whose HIV status is unknown should be counselled to be tested for HIV. Definition Exclusive breastfeeding: The mother gives her infant only breastfeeds (including expressed breast milk), except for drops or syrups consisting of vitamins, mineral supplements, or medicines. The exclusively breastfed child receives no food or drink other than breast milk not even water. WHO infant-feeding recommendations for HIV-positive mothers Because of the risk of PTCT of HIV through breastfeeding, WHO/UNICEF s recommendations to HIV-positive women vary according to the setting, depending on the following factors: Acceptability of replacement feeding The amount of time, knowledge, skill and other resources available to the mother to provide replacement feeding Whether replacement feeding is affordable and sustainable Whether replacement feeding is safe In some settings, national policy recommends that HIV-positive women breastfeed exclusively for the first six months. In other settings, national policy recommends replacement feeding. Mixed feeding is not recommended; infants given replacement feeds and breast milk during the first six months are more likely to acquire HIV 126 HANDOUT

149 infection through breast milk than those who are exclusively breastfed. Module 3 Submodule 4 Infant feeding in the context of HIV infection When acceptable alternatives are not available, affordable, feasible, sustainable and safe, exclusive breastfeeding provides for balanced nutrition, protects infants against certain infections and chronic diseases, and reduces infant mortality associated with childhood illnesses such as diarrhoea or pneumonia. WHO/UNICEF infant-feeding recommendations for HIV-infected mothers When replacement feeding is acceptable, feasible, affordable, sustainable and safe (AFASS), avoidance of all breastfeeding by HIV-infected mothers is recommended. Otherwise, exclusive breastfeeding is recommended during the first months of life. Definitions Acceptable: The mother perceives no barrier in choosing a feeding option for cultural or social reasons, or for fear of stigma and discrimination. Feasible: The mother (or family) has adequate time, knowledge, skill and other resources to prepare feeds and to feed her infant, and the support to cope with family, community and social pressures. Affordable: The mother and family, with available community and/or health system support, can pay for the purchase, production, preparation and use of the feeding options including all ingredients, fuel and clean water without compromising the family s health and nutrition spending. Sustainable: The mother has access to a continuous and uninterrupted supply of all ingredients and commodities needed to implement the feeding option safely for as long as the infant needs it. Safe: Replacement foods are correctly and hygienically stored, and prepared in nutritionally adequate quantities; infants are fed with clean hands using clean utensils, preferably with cups. Recommendations on guidance and support Note the following recommendations on guidance and support for implementing the WHO feeding recommendations: Provide all HIV-positive mothers with feeding counselling that includes general information about the risks and benefits of various infant-feeding options as well as specific guidance in selecting the option most suitable for their situation. Support the mother s choice, whichever feeding option she chooses. Conduct local assessments to identify the range of feeding options that are acceptable, feasible, affordable, sustainable and safe in particular contexts. Develop information and education materials about PPTCT of HIV, including facts about breast-milk transmission, and disseminate the material to the public, affected communities and families. Train, deploy, supervise and support adequate numbers of people who can counsel HIV-infected women on infant feeding. HANDOUT 127

150 Module 3 Submodule 4 Infant feeding in the context of HIV infection Provide updated training to counsellors when new information and recommendations emerge. Empower health-care workers to provide effective feeding counselling. Extend the services of health-care workers to the community using trained lay or peer counsellors. FEEDING OPTIONS Mothers with HIV infection and their families must consider many factors when deciding which feeding option is the best for their infants. Health-care workers providing PPTCT services play a critical role in facilitating and guiding the decisionmaking process, and in helping mothers and families balance the many risks and benefits of each option. Mothers and families should receive information about the benefits and risks of each available method. All education and counselling should be in accordance with national guidelines and adapted to reflect local customs, practices and beliefs. Breast-milk feeding options Option 1: Exclusive breastfeeding The benefits/motivation and risk/constraints of exclusive breastfeeding are presented in Table 3.6. Option 2: Exclusive breastfeeding with early cessation HIV-positive mothers who choose to breastfeed may select this option. Before stopping breastfeeding, which may take from a few days to 2 or 3 weeks, HIV-infected mothers should receive formal or informal support and guidance to maintain breast health and to comfort her infant, along with psychosocial and infant nutritional support. The benefits/motivation and risks/constraints of exclusive breastfeeding with early cessation are presented in Table 3.7. Option 3: Using wet nurses An HIV-positive mother, in keeping with local custom, may ask another woman who is HIV-negative to breastfeed her baby. When a woman breastfeeds a baby to whom she has not given birth, it is called wet nursing. If a woman expresses her milk for another baby it is called donor breast milk. Table 3.8 presents the benefits/motivation and risks/constraints of using wet nurses. Option 4: Expressed and heat-treated breast-milk feeding Expressing and heat-treating breast milk is another option to consider: 128 HANDOUT

151 Module 3 Submodule 4 Infant feeding in the context of HIV infection Table 3.6 Exclusive breastfeeding Benefits/motivation of exclusive breastfeeding Breast milk is easily digestible and gives infants all the nutrition and water they need. They do not need any other liquid or food for the first six months of life. Nutrients in breast milk that may not be available in other foods include high-quality protein, certain fatty acids thought to be essential for the infantês developing brain and micronutrients, including iron in an efficiently absorbed form. Breast milk is always available and does not need any special preparation. Breast milk protects infants and children up to at least two years of age from diseases, particularly diarrhoea and pneumonia. It contains numerous anti-infective and growth factors, which stimulate development of the infantês gut. Even with optimal hygiene, nonbreastfed infants have higher rates of diarrhoea, respiratory, ear and other infections compared with breastfed infants. Additionally, some chronic diseases in later life are less common in children who were breastfed as infants. Breastfeeding prevents anaemia and certain types of cancers in the mother. It also delays the next pregnancy. Breastfeeding provides the close contact that deepens the emotional relationship or bonding between the mother and her child. Risks/constraints of exclusive breastfeeding The risk of PTCT exists as long as the HIV-infected mother breastfeeds since breastfeeding exposes the infant to HIV. Breastfeeding increases the risk of HIV transmission if the mother has a breast infection (e.g. mastitis) or cracked and bleeding nipples or the baby has ulcers in the mouth. Family, friends and neighbours may pressurize the mothers to give water, other liquids or foods to the infant. Although 99% of mothers have sufficient milk to feed their infants, many are concerned that they do not have enough milk to exclusively breastfeed. Breastfeeding requires feeding on demand at least 8 10 times a day, and working mothers may find it difficult to exclusively breastfeed once they return to work (unless they can privately express milk as required during the workday and can arrange to store it in a cool place). Breastfeeding mothers require an additional kcal/day for their own health. If a mother wishes to give her own milk to her infant If options for alternative types of milk are too expensive or difficult to procure For sick and low-birth-weight babies who are more at risk from artificial feeding and may otherwise require special types of formulas Table 3.9 presents the benefits/motivation and risks/constraints of this infant-feeding option. Replacement feeding Option 1: Replacement feeding using commercial formulas The benefits/motivation and risks/constraints of using commercial feeding formulas are presented in Table Table 3.11 summarizes how much commercial formula is required by infants at various ages. HANDOUT 129

152 Module 3 Submodule 4 Infant feeding in the context of HIV infection Table 3.7 Exclusive breastfeeding with early cessation Benefits/motivation of exclusive breastfeeding with early cessation The baby gets all the advantages of breastfeeding in the early months of life. Early cessation of breastfeeding terminates the infantês exposure to HIV through breastfeeding. Early cessation of breastfeeding also reduces the period during which the infant receives mixed feeds. Risks/constraints of exclusive breastfeeding with early cessation Infants may become malnourished if suitable breast-milk substitutes are unavailable or are inappropriately provided. Infants may be at increased risk of diarrhoea if breast-milk substitutes are not prepared safely. Cup feeding requires patience and time. If possible, mothers should be taught how to feed infants using a cup before cessation of breastfeeding, using expressed breast milk. Infants may become dehydrated, anxious, disoriented and unhappy if cessation of breastfeeding is too rapid, and they are unprepared for the transition. They may cry excessively or refuse food, making the transition more difficult for themselves and their families. Complementary foods must be available once breastfeeding has ceased. Information on complementary feeding after 6 months is included. The motherês breasts may become engorged and infected during the transition period if some amount of milk is not expressed and discarded. Mothers are at risk of becoming pregnant if they are sexually active.* *As a population, breastfeeding women have a lower fertility rate than women who are not breastfeeding; but on an individual basis, breastfeeding (and the delay in ovulation as a consequence of lactation) is an unreliable form of contraception. Therefore, breastfeeding women who do not want to conceive should use another, more reliable form of contraception. Table 3.8 Using wet nurses Benefits/motivation of using wet nurses Use of a wet nurse poses no risk of HIV transmission provided the wet nurse is not infected with HIV. Many of the other benefits of breastfeeding described above also apply to breastfeeding using a wet nurse. Risks/constraints of using wet nurses The baby may get attached to the wet nurse. The wet nurse must protect herself from HIV infection during the entire time she is breastfeeding. The wet nurse must be available to breastfeed the infant frequently, throughout the day and night, or she must be able to express the milk to be provided when she is away from the infant. People might ask the mother why someone else is breastfeeding her infant. There is a risk of transmission of HIV from an infected infant to a wet nurse. Additional education and support may be necessary to assist mothers who choose to use wet nurses. For example, mothers and wet nurses should be familiar with the techniques for breast-milk expression, use of heat-treated breast milk and the option of using breast milk banks. 130 HANDOUT

153 Module 3 Submodule 4 Infant feeding in the context of HIV infection Table 3.9 Expressed and heat-treated breast-milk feeding Benefits/motivation of expressed and heat-treated breast-milk feeding Heat treatment destroys HIV in the breast milk, making it safe to feed oneês baby. The mother feels more confident. Bonding between the mother and baby is optimum. Risks/constraints of expressed and heat-treated breast-milk feeding Heating reduces the level of some anti-infective components of breast milk. However, heat-treated expressed breast milk remains superior to infant milk substitutes. Table 3.10 Replacement feeding using commercial formulas Benefits/motivation of replacement feeding using commercial formulas Commercial formulas pose no risk of transmitting HIV to the infant. Commercial formulas are made especially for infants and young children. Commercial formulas include most of the nutrients an infant needs. Other adult family members can help feed the infant. If the mother falls ill, she can be sure that others can feed her infant while she recovers. Risks/constraints of replacement feeding using commercial formulas Commercial formula does not contain antibodies which protect infants and young children from infection. An infant who is exclusively fed a commercial formula is more likely to get sick from diarrhoea and pneumonia, and may develop malnutrition. A continuous and reliable supply of the formula is required to prevent malnutrition. Commercial formula is expensive. Families must buy feeding cups and soap for cleaning the cups and utensils used for preparing the formula. Safe preparation of commercial formula requires clean water boiled for 10 minutes. The mother or caretaker must prepare fresh formula for each feed, according to directions, day and night. The infant needs to drink from a cup, which can be time-consuming. In some settings, a mother who does not breastfeed may be questioned about her HIV status by the family, neighbours or friends (see ÂWhen cup feeding may not be acceptableê). Formula feeding offers the mother no protection from pregnancy. Table 3.11 Commercial infant formula requirements in the first six months of life Month 500 g tins/month 450 g tins/month Total HANDOUT 131

154 Module 3 Submodule 4 Infant feeding in the context of HIV infection Option 2: Replacement feeding using home-prepared modified animal milk Formula can be prepared at home using fresh animal milk, dried milk powder or evaporated milk. Preparing formula with any of these involves modifications to make it suitable for infants up to six months of age. Modifications include diluting the milk with boiled water in precise amounts to reduce the formula s concentration and adding sugar to increase its energy density. The required dilution varies for milk of different animals. Directions for modifying animal milk for feeding infants up to six months old are given in Table Dilution is not required for infants aged six months and older. Suitable and unsuitable milk Not all types of milk are suitable for use in home-prepared infant formulas. The types of milk suitable for home-prepared formula are the following: Fresh cow, goat, sheep, buffalo, or camel milk (full-cream or whole) Full-cream or whole dried milk powder Evaporated milk Ultra-heat treated milk (pasteurised milk) animal milk contains nearly 3 times more proteins than human milk. fat content varies from 3.4% in human milk to 8.8% in buffalo milk. human milk contains more sugar than animal milk Types of milk and liquids that are not suitable for home-prepared formulas are the following: Fresh animal milk already diluted by an unknown amount Skimmed or low-fat milk powder Sweetened or condensed milk Thin cereal-based gruels Fruit juice, teas or sodas Use of supplements Infants who are fed home-modified animal milk formulas require additional micronutrient supplements because animal milk is relatively low in iron, zinc, vitamins A and C, and folic acid. Table 3.9 lists the benefits/motivation and risks/constraints of using home-prepared infant formulas. Mixing home-prepared formula For infants up to the age of 6 months, modify animal milk to create an infant formula following these directions: 132 HANDOUT

155 Module 3 Submodule 4 Infant feeding in the context of HIV infection Table 3.12 Replacement feeding using home-prepared, modified animal milk Benefits/motivation for replacement feeding using home-prepared, modified animal milk Home-prepared formulas present no risk of HIV transmission. Home-prepared formula may be less expensive than commercial formula, and is easily available if the family has milk-producing animals. Mothers and caregivers can use a home-prepared formula when supplies of commercial formula run out. Other adult family members can help feed the infant. Risks/constraints for replacement feeding using home-prepared, modified animal milk Home-prepared formula does not contain antibodies which protect infants from infection. An infant who is exclusively fed a home-prepared formula is more likely to fall sick from diarrhoea and pneumonia, and may develop malnutrition. The infant may develop malnutrition if the formula is not prepared and stored correctly or if nutritional supplements are not used. Home-prepared formula does not contain all the nutrients that infants need; in particular, it may not provide adequate nutritional support for infants up to six months of age. Multivitamin supplements, in liquid or powder form, are needed to prevent anaemia and other forms of malnutrition. Formulas based on animal milk are more difficult for infants to digest. The mother or caregivers must prepare fresh formula for each feed, day and night. The mother or caregiver must dilute home-prepared formula with clean water (boiled for 10 minutes) and add the correct amount of sugar in accordance with policy. The mother must stop breastfeeding completely, or the risk of transmitting HIV to her infant will continue. Infants require about 15 litres of modified animal milk formula per month for the first six months. Families will need access to a regular supply of animal milk; they will also need to buy sugar and multivitamin syrup or powder, fuel for boiling water, and soap for cleaning the feeding cups and utensils used in preparing the formula. The mother must learn to measure milk, water and sugar, and prepare the feed safely. Babies must be fed from a cup which can be time-consuming. In some settings, a mother who does not breastfeed may be questioned about her HIV status by family, neighbours or friends (see ÂWhen cup feeding may not be acceptableê). Formula feeding offers the mother no protection from pregnancy. Reconstitute evaporated milk with boiled and cooled water according to the label, to the strength of fresh milk. Then modify it as you would fresh milk by diluting and adding sugar. If the mother plans to use powdered full-cream milk or evaporated milk, provide a recipe specific to the brand she will be using. State the amount of water necessary to reconstitute it to the strength of milk, and the dilution required to prepare a breastmilk substitute. Micronutrient supplements should be given with all the above home-prepared breast milk substitutes. Benefits of cup feeding Replacement or complementary feeds should be given from a cup. Health-care HANDOUT 133

156 Module 3 Submodule 4 Infant feeding in the context of HIV infection Table 3.13 Directions for mixing home-prepared formula 60 ml (one feed for a 1-month-old infant) Type of milk Milk Water Sugar Cow, goat or camel 40 ml 20 ml 4 g (1 teaspoon) Sheep and buffalo 30 ml 30 ml 3 g (3/4 teaspoon) 90 ml (one feed for a 2-month-old infant) Type of milk Milk Water Sugar Cow, goat or camel 60 ml 30 ml 6 g (1 1/4 teaspoons) Sheep and buffalo 45 ml 45 ml 5 g (1 teaspoon) 120 ml (one feed for a 3 4-month-old infant) Type of milk Milk Water Sugar Cow, goat or camel 80 ml 40 ml 10 g (2 teaspoons) Sheep and buffalo 60 ml 60 ml 6 g (1 1/4 teaspoons) 150 ml (one feed for a 5 6-month-old infant) Type of milk Milk Water Sugar Cow, goat or camel 100 ml 50 ml 10 g (2 teaspoons) Sheep and buffalo 75 ml 75 ml 10 g (2 teaspoons) This material is also available as a wall chart. workers should receive training so that they can show mothers and families how to cup feed. They should also explain to mothers and families that cup feeding is preferable for the following reasons: Cups are safer, as they are easier to clean with soap and water than bottles. Cups are less likely than bottles to be carried around for a long time (which gives bacteria the opportunity to multiply). Cup feeding requires the mother or other caregiver to hold and have more contact with the infant, and provides more psychological stimulation than bottle feeding. Cup feeding is better than feeding with a cup and spoon because spoon feeding takes longer and the mother may stop before the infant has had enough. However, some caregivers prefer to use a cup and spoon. Feeding bottles are usually not necessary, and for most purposes they are not the preferred option. Using feeding bottles and artificial teats should be actively discouraged because bottle feeding increases the infant s risk of diarrhoea, dental disease, and ear infections. bottle feeding increases the risk that the infant will receive inadequate stimulation and attention during feedings. bottles and teats need to be thoroughly cleaned with a brush and then boiled to sterilize them; this takes time and fuel. bottles and teats cost more than cups, which are more readily available. 134 HANDOUT

157 How to feed an infant using a cup Module 3 Submodule 4 Infant feeding in the context of HIV infection Hold the infant sitting upright or semi-upright on your lap. Hold the cup of milk to the infant s lips. Tip the cup so that the milk just reaches the infant s lips. The cup should rest lightly on the infant s lower lip, and the edges of the cup should touch the corners of the infant s upper lip. At this point, the infant will become alert and open her or his mouth and eyes. A low-birth-weight infant will start to take in the milk with the tongue. A fullterm or older infant will suck the milk, spilling some of it. Do not pour the milk into the infant s mouth. Simply hold the cup to the infant s lips and let the infant take it. When the infant has had enough, her mouth will close and she will not take any more. If the infant has not taken an adequate amount, she may take more during the next feed, or the mother may need to provide feeds more often. Measure the infant s intake over 24 hours, not just during one feed. When cup feeding may not be acceptable In many cultures, women are expected to breastfeed their infants for a year or longer. If the infant is not breastfed or if breastfeeding is discontinued early, questions about the mother s HIV status may arise. Once a woman decides how she plans to feed her infant, ideally during the antenatal period, the health-care worker should help her prepare answers to questions about her choice. If the woman decides to use a replacement feeding option from birth or stops breastfeeding early, she should receive information about replacement feeds. During the counselling process, health-care workers should ask the woman specific questions, such as What will you say when your mother-in-law or neighbour asks you why you are not breastfeeding or why you have stopped breastfeeding? The health-care worker can help the mother come up with an explanation with which she is comfortable. For example, some mothers may choose to say, The doctor said my baby is not doing well, so he needs to get formula milk, or I m having breast problems, so I had to stop. The counselling session may also be an opportunity to further discuss issues related to the disclosure of the mother s HIV status to the family. COUNSELLING AND SUPPORT FOR INFANT FEEDING Counselling about infant feeding An HIV-infected woman should receive counselling that includes general information about the risks and benefits of various infant-feeding options guidance in selecting and adhering to the option most suitable for her situation. HANDOUT 135

158 Module 3 Submodule 4 Infant feeding in the context of HIV infection Additional training on counselling and support for infant-feeding Infant-feeding counselling for HIV-positive women is an integral part of every PPTCT programme and requires counsellors to have many specific skills. Special WHO training courses exist for general breastfeeding and infant-feeding counselling and support (a 40-hour course), and for HIV and infant-feeding counselling (a 3-day course). It is important that participants providing infant-feeding counselling be fully trained and have the necessary skills. Specific infant-feeding counselling skills include listening and learning, building the client s confidence, giving support and providing information. Vide: Infant feeding and HIV counselling training course for PPTCT counsellors. Unicef, NACO, BPNI, 2004 The final decision on an infant-feeding strategy should be taken by the woman, and she must receive support for her choice. Infant-feeding counselling, education, and support should be provided during both the antenatal and postnatal periods; be based on country or local protocol and include an understanding of the sustainable resources accessible to the mother and her family; be based on an individual woman s circumstances, including her health, social and financial status, as well as her customs and beliefs; include information on factors affecting transmission of HIV through breastfeeding. include information on various feeding options, including the risks and benefits of each; provide women with the skills needed to feed their infants safely; include demonstrations or opportunities for practice; encourage partner or family involvement in infant-feeding decisions; and support women when they disclose their HIV status to their loved ones. Table 3.14 lists questions that health-care workers can ask an HIV-infected woman to help her decide on an infant feeding strategy Counselling visits HIV-infected mothers should receive infant-feeding counselling over the course of several sessions. At least one counselling session should take place during the antenatal period. If possible, this should be undertaken some time after post-test counselling, but not immediately after the mother learns her test results. More than one session is ideal. 136 HANDOUT

159 Module 3 Submodule 4 Infant feeding in the context of HIV infection Table 3.14 Deciding how to feed your infant: A checklist for the HIV-positive pregnant woman How do you want to feed your baby? What feeding options are available to you? What are the pros and cons of each feeding option, for you and for your baby? Can you minimize the risks of your preferred option? What do you think about the risk of your preferred option? Breastfeeding: Are you willing to take a 10% 20% risk of transmitting HIV to your infant? Are you able to breastfeed exclusively? How do you visualize breastfeeding exclusively but stopping early? Replacement feeding: Will you be able to buy infant formula or the ingredients for a home-prepared formula? Have you thought of the equipment and supplies needed to prepare feeds hygienically? Do you have a health-care worker who can offer care if you or your infant should get sick? Partner and family: What expectations do your partner or family have? What will happen if you take a decision contrary to their expectations? The next visit should occur immediately after birth, followed by another within 10 days. For mothers giving birth at home, recommend a follow-up visit within six days of the baby s birth. Schedule monthly follow-up sessions whenever the mother brings the child to the clinic for well-baby check-ups, immunizations, or when the child is sick. Additional sessions may be required during special high-risk periods, such as when the child is sick, when the mother returns to work, and when she decides to change the feeding method. Infant-feeding counselling for HIV-positive mothers Figure 3.1 explains the seven steps of counselling HIV-positive mothers about infant feeding. You may want to look at the following directions to help you understand the flow chart. If this is the mother s first infant-feeding counselling session and she is in the early stages of pregnancy Follow steps 1 5. Ask her to return in her third trimester to learn how to implement the feeding method (Step 6). She is in a late stage of pregnancy Follow steps 1 6. She already has a child and is breastfeeding Follow steps 1 5, the relevant part of step 6, and step 7 HANDOUT 137

160 Module 3 Submodule 4 Infant feeding in the context of HIV infection She already has a child and has opted for replacement feeding Follow the relevant parts of steps 6 and 7 If the mother has already been counselled and has chosen a feeding option Follow the relevant part of step 6 If this is a follow-up visit Follow step 7 Postnatal visits During each postnatal visit, the clinic staff should review information from the infantfeeding counselling session and focus on issues most relevant to the mother. Reinforcing essential and relevant points supports optimal nutrition, growth and development of the infant while minimizing the risk. COMPLEMENTARY FEEDING AFTER SIX MONTHS All infants require nutritious complementary foods beginning at about six months of age. The term complementary food refers to any food, whether manufactured or locally prepared, suitable as a complement to breast milk, or a commercial or homeprepared replacement feed or breast-milk substitute, when either becomes insufficient to satisfy the nutritional requirements of the infant. This term is preferred because it implies that the newly introduced foods are provided in addition to the milk feeds; they are not intended to replace milk at this point. The term weaning incorrectly suggests the cessation of breast milk or formula. Infants should receive continued frequent breastfeeding or cup feeding with a commercial or home-prepared formula into the second year of life. Recommendations for complementary feeding should be based on locally available foods and feeding practices. General principles for complementary feeding include the following. Beginning complementary foods Begin complementary feeding at six months of age with small amounts of food. The amount of food required will increase as the child gets older. Complementary foods should be appropriate for the infant s age. The average healthy infant requires the following amounts: At 6 8 months, approximately 200 kcal per day At 9 11 months, approximately 300 kcal per day At months, approximately 550 kcal per day 138 HANDOUT

161 STEP 1 Assess the mother s situation Module 3 Submodule 4 Infant feeding in the context of HIV infection STEP 2 Explain the risk of PPTCT STEP 3 Explain the benefits and risks of various feeding options, starting with the mother s initial preference STEP 4 Help the mother choose a feeding option STEP 5 Discuss coping with disclosure and the stigma related to HIV status and feeding choice STEP 6 Demonstrate how to practise the chosen feeding option How to practise exclusive breastfeeding How to practise other breast-milk feeding How to practise replacement feeding STEP 7 Provide follow-up counselling and support Explain when and how to stop breatfeeding early Check feeding Monitor growth Check for signs of illness Discuss complementary feeding from 6 to 24 months Figure 3.1. Infant-feeding counselling for HIV-positive mothers (Source: WHO 2003) After complementary foods have been started, breast milk or nutritionally fortified breast-milk substitutes will continue to be needed frequently throughout the day. The requirement for breast-milk substitutes after six months is as follows: At 6 8 months, 600 ml per day At 9 11 months, 550 ml per day At months, 500 ml per day HANDOUT 139

162 Module 3 Submodule 4 Infant feeding in the context of HIV infection Infants older than six months do not require dilution of animal milk. However, special preparation is still required for fresh and powdered milk, as follows: For fresh animal milk, boil the milk to kill any bacteria. For powdered or evaporated milk, add enough clean water, according to the directions on the tin, to make full-strength milk. No special preparation is needed for processed, pasteurized, or ultra-heat treated milk. However, the mother or caregiver should increase the number of complementary feeds as the child gets older. The appropriate number of feeds depends on the energy density of the local foods and the amount usually consumed at each feed. For the average healthy infant At 6 8 months, provide complementary foods 2 3 times a day. At 9 24 months, provide complementary foods 3 4 times per day, with nutritious snacks offered 1 2 times per day. If the energy density or the amount of food taken per meal is low, more frequent feeds may be required. Energy requirements are higher for unhealthy infants because of the metabolic effects of infections. Energy requirements are also higher for infants who are severely malnourished and undergoing nutritional rehabilitation. Feeding older infants Gradually increase food consistency and the variety of foods offered as the infant gets older, adapting to the infant s requirements and abilities. By 6 months, infants can eat pureed, mashed and semisolid foods. By 8 months, most infants can eat finger foods, snacks that they can pick up and eat by themselves. By 12 months, most young children can eat the same types of foods as eaten by the rest of the family, keeping in mind their need for nutrient-dense foods. Offer children 12 months and older a variety of nutrient-dense foods. On a daily basis, or as often as possible, they should eat eggs, dairy products, legumes, pulses, rice, wheat or other adequate sources of protein. Children should eat fruit and vegetables that are rich in vitamin A every day. If nutritionally adequate or fortified complementary foods are not locally available, consider giving the child a vitamin mineral supplement to avoid growth and development deficiencies. Mothers and caregivers should avoid giving children drinks with low nutrient value, such as tea and coffee (which interfere with iron absorption), and sugary drinks such as soda. Limit the amount of juice offered to avoid displacing more nutrientrich foods. 140 HANDOUT

163 Module 3 Submodule 4 Infant feeding in the context of HIV infection Avoid offering foods that may cause choking, such as those that have a shape or consistency that could cause them to become lodged in the trachea. Foods to be avoided may include nuts, grapes and raw carrots. Responsive feeding Feed infants directly and assist older children when they feed themselves, being sensitive to their hunger and satiety cues. Feed slowly and patiently, encouraging the child to eat, but do not force food. Encourage food intake by experimenting with different food combinations, tastes and textures, especially if the child refuses to eat. Minimize distractions during meals if the child loses interest easily. Remember that feeding times are periods of learning and love: talk to children during feeding, using eye-to-eye contact. Good hygiene and proper food handling Wash hands before preparing and eating food. Store foods safely and serve them immediately after preparation. Use clean utensils to prepare and serve food. Use clean cups and bowls to feed children. Avoid using feeding bottles since they are difficult to keep clean. Feeding children with allergies and illnesses Mothers and caregivers of infants and young children with a family history of allergies or food sensitivities should delay introducing cow s milk, egg white and fish until after the infant reaches 12 months of age and should not feed the child peanuts or other nuts until after the child is 3 years old. Mothers and caregivers should give their children increased amounts of fluids when they are ill and encourage them to eat semisolid or solid foods. After the illness, mothers and caregivers should offer their children at least one extra meal a day, and encourage them to eat more. HANDOUT 141

164 Module 3 Submodule 4 Infant feeding in the context of HIV infection Key points The risk of HIV transmission continues during the entire period an HIV-infected mother breastfeeds her child. HIV-infected women and women whose HIV status is unknown need infantfeeding counselling and support. The mother has the right to choose how she wants to feed her infant; the healthcare worker s job is to support her choice. HIV-infected mothers should avoid breastfeeding when replacement feeding is acceptable, feasible, affordable, sustainable and safe. Exclusive breastfeeding with early cessation at or before six months is appropriate when breastfeeding is the chosen option. Counselling, education and support are key to establishing and maintaining safe infant-feeding practices. Postnatal counselling and infant follow-up sessions are required whenever a mother elects to change her feeding practice, especially in the first 2 years of the infant s life. PPTCT staff can prevent spillover or misuse of replacement feeding in two ways: promote exclusive breastfeeding for the general population, and discourage the use of replacement milk supplies by mothers whose infants do not need them. 142 HANDOUT

165 Module 4 Module 4 Submodule 1 Targeted VCT intervention: Injecting drug users (IDUs) Handout Submodule 1: Targeted VCT intervention: Injecting drug users (IDUs) Session objectives At the end of the session, trainees will be able to: Identify the specific HIV transmission risk behaviours of injecting drug users (IDUs) Appreciate the need to adapt voluntary counselling and testing (VCT) to the specific needs of IDUs INTRODUCTION The UN regional taskforce on drug use and HIV vulnerability concluded in the year 2000 that Drug users in Asia are highly vulnerable to HIV transmission because of the legal, political, socioeconomic, health service and cultural situations in which they live. The rates of opioid dependency and injecting drug use (IDU) vary across countries and cultural settings in the Asian Region. Confirmed cases of HIV infection and of AIDS among IDUs are continuing to increase throughout the region. Several countries are now facing serious epidemics. The countries with the highest recorded HIV prevalence rates among IDUs are China, India, Indonesia, Iran, Malaysia, Myanmar, Nepal, Thailand and Vietnam. The HIV outbreak among IDUs in Asia has had several consistent features: It has been explosive: HIV prevalence among IDUs in Bangkok rose from 2% to 40% in six months in 1989, with clear links to incarceration. It has been transnational: The highest prevalence zones in China and India (Yunnan and Manipur states, respectively) share their borders with Myanmar. It has spread among sexual partners of IDUs in China, India and Thailand. Given the inadequate availability of both effective drug treatment and HIV prevention measures among IDUs in most countries, the epidemics have spread unabated. India is wedged between the world s two largest areas of illicit opium production, the Golden Crescent (Pakistan, Afghanistan and Iran) and the Golden Triangle (Burma, Laos and Thailand). This has rendered India both a destination and a transit route for opiates produced in these regions. In addition, the possibility of diversion of illicit opium and its conversion into heroin; the illicit cultivation of opium, poppy and cannabis; the clandestine manufacture of methaqualone and mandrax; the trafficking of cannabis and hashish from Nepal; and the diversion of HANDOUT 143

166 Module 4 Submodule 1 Targeted VCT intervention: Injecting drug users (IDUs) precursors from both domestic and international trade add to the drug scenario. A new factor in this picture is the trafficking of amphetamine-type stimulants (ATS) from Myanmar into India. The most significant recent shift in the drug use pattern in the region, including India, is the move from smoking or chasing to IDU. Heroin, buprenorphine (tidigesic/ tamgesic) and dextropropoxyphene (spasmoproxyvan) are the most commonly injected drugs in India. Different types of Injecting Drug Users Single-time experimental users Casual, recreational users Users with substance dependency The prevalence of HIV infection among drug users in India indicates a differential epidemic characterized by unacceptably high levels in certain areas (Manipur with a reported HIV prevalence of 80%), high prevalence rates (above 5%) in many cities of India with a concentrated IDU population (Chennai, Mumbai, New Delhi), and low-level prevalence in certain areas (Kolkata, <2% HIV seroprevalence for the past seven years). In some parts of India, the population segments at risk for drug use and high-risk sex overlap. High HIV transmission through IDUs has been reported in Manipur and Nagaland. In Manipur, 45% of wives of HIV-infected IDUs were found positive. In India, drugs are often sold openly in public places such as the roadside, parks, playgrounds and market complexes. Although India does not appear to have a widespread culture of professional injectors or street doctors, as in some Asian countries, there appear to be evidence of shooting galleries which IDUs frequent to inject. Syringes and needles are purchased from pharmacies without the need for any prescription. Though they are regarded as inexpensive, many drug users tend to focus on buying the drug rather than purchasing new injecting equipment. The sharing of equipment among IDUs in India is widespread. Recent data indicate that most IDUs had, at some stage, shared their needle and syringe. The majority of drug users in India are men. According to a study in Imphal, the prevalence of HIV infection in women IDUs was 57% compared to 20% among women non-idus. However, data on the use of drug abuse treatment may underestimate the number of women drug users as women addicts are predominately a hidden population. In northeast India, the number of young widows of addicts is increasing; many are HIV-positive, having been infected by their husbands. The 144 HANDOUT

167 Module 4 Submodule 1 Targeted VCT intervention: Injecting drug users (IDUs) reported increase of HIV infection among wives and children of IDUs highlights the crucial need to reach the sex partners of IDUs with prevention, education, care and support services. IDUs inject drugs into veins, under the skin (skin-popping), or inject substances intramuscularly (steroid injectors). Drug injecting is often a group activity among IDUs. Sharing the same injecting paraphernalia syringe, needle, spoon, filter, and/ or tourniquet by members of the groups is a common practice. Sharing is also common among regular sexual partners. If one member of the group or a partner has a sexual relationship with an HIV-positive member of the group, and sharing of injecting paraphernalia occurs, the chances of infection spreading rapidly to other members of the group is extremely high. The chances of infection spreading through the injecting route are much higher than through the sexual route of transmission. Thus, once HIV enters a social network of IDUs, its spread within the IDU community can be explosive. Drug abuse treatment is not chosen by all drug abusers at risk for HIV infection, or may not be attractive to drug abusers early in their injecting habit. In addition, recovery from drug addiction can be a long-term process and frequently requires multiple episodes of treatment. Relapse to drug abuse and risk behaviour can occur during or after successful treatment episodes. Various outreach activities have been designed to access, motivate and support drug abusers who do not seek treatment to help change their behaviour. Outreach activities taking place outside conventional health and social care environments reach out-of-treatment drug injectors, increase drug treatment referrals, and may reduce high-risk drug use and sexual behaviours, as well as the incidence of HIV injection. A wide range of interventions can be used to reduce HIV-related risks among IDUs. Effective intervention approaches currently employed in some countries include needle and syringe programmes; various forms of outreach work; VCT; peer-led education; treatment programmes for both detoxification and long-term maintenance that include opioid substitution pharmacotherapy, safe sex behaviour change interventions, etc. There is a large and growing body of evidence to suggest that IDUs can and will change their behaviour to reduce their own risk of HIV infection and, to a lesser extent, the risk to others if they are provided access to the services and means of behaviour change they require. SOCIAL AND ETHICAL ISSUES IN THE PROVISION OF VCT CARE AND TREATMENT TO IDUS People who use drugs, especially IDUs, often face judgemental attitudes and responses from counsellors and other health workers. Stigmatizing and marginalizing make IDUs feel alienated, fearful and out of touch with the support and services they need. This has an adverse impact on HIV prevention, care and treatment HANDOUT 145

168 Module 4 Submodule 1 Targeted VCT intervention: Injecting drug users (IDUs) programmes for IDUs as the target population will not access services they deem as not being user-friendly. Legal and ethical factors are also creating challenges for HIV prevention, care and treatment programmes for IDUs. For example, the illegal nature of drug use can drive drug users to hide from society, which effectively cuts them off from services they desperately need. In many countries, taking drugs is a criminal act and punishable by law. Criminalization of drug-taking makes IDUs hard to reach, and can pose ethical and legal issues for the counsellor. This serves as a barrier to the provision of effective VCT as clients may be unwilling to disclose risk factors associated with their IDU and thus fail to receive appropriate risk assessment, advice and care. Creation of an enabling environment to enhance access to care and support services and reduction of the risk of contracting HIV and other sexually transmitted infections (STIs) include the following: Create an environment wherein IDUs are not afraid to seek information, services and care Ensure that drug control and HIV prevention policies are mutually reinforcing Involve people vulnerable to or living with HIV in policy development and programme design Introduce early interventions while the HIV prevalence is still low Give IDUs access to education, training and employment so that they have real opportunities Provide services via outreach to those with limited access to services Offer hope for a life after drugs by offering humane treatment choices, including substitution Provide clean needles, syringes and condoms to IDUs who are not in treatment Consider also the sexual partners of IDUs ROLE OF VCT AND PREVENTION COUNSELLING Access to HIV testing and counselling services VCT programmes have sought to effect changes in HIV/AIDS-related risk behaviour among IDUs. Information, education and communication (IEC) activities play a key role in increasing awareness of, and access to, clinics and testing sites where VCT can be done. They can also be used to facilitate learning within the context of VCT, including reduction of both sexual and injection-related risk behaviours. Risk-reduction counselling Risk-reduction counselling aims to use interpersonal communication to help IDUs clarify their feelings and thoughts in the hope that they will take action to protect 146 HANDOUT

169 Module 4 Submodule 1 Targeted VCT intervention: Injecting drug users (IDUs) themselves and their partners against infection. Individual or group-based riskreduction counselling, and the education and communication that accompanies it, can also assist HIV-positive IDUs in relationships to minimize their personal risk behaviours and those of their sexual partners. Counsellor s attitudes towards working with IDUs Thai study, HIV counsellors n= 803 [Casey, In press] Predictor of psychological morbidity (p=0.039). Strong relationship between work avoidance, lack of training and counsellor stress. Short counsellor courses and case complexity. psychiatric co-morbidity (HIV and pre-morbid). treatment adherence and HIV/substance related cognitive impairment. EVIDENCE FOR THE EFFECTIVENESS OF VCT FOR IDUS Effective models: VCT usually comes as a package linked to peer and outreach services. Outreach programmes build trust and VCT can be delivered either through outreach or at fixed services centres. Only effective in behaviour change when there is access to harm-reduction services. Reduction of needle sharing has been observed where harm reduction in counselling is included and needle exchange programmes are in place. Increased condom use, particularly in HIV-positive clients. Research suggests that community interventions aimed at providing VCT and thus detecting seropositive IDUs, counselling them about their status and assisting them to reduce the risk of transmitting HIV are effective in reducing the spread of HIV from IDUs to their sexual partners. In most studies, changes in behaviour to prevent sexual transmission of HIV are more marked among those who test seropositive than among those who test seronegative. This implies that seronegatives IDUs may continue to put themselves at risk of sexual transmission of HIV (particularly if their sexual partner is also an IDU). Emphasis on providing counselling about prevention of sexual transmission of HIV for IDUs who test negative is important. CONSIDERATIONS AND CHALLENGES IN THE TESTING OF IDUS Intoxication and informed consent it is important that the counsellor assesses the client for drug behaviour and consent is signed by a client who is not inebriated. Conducting risk assessment to evaluate the client for risk of HIV. HANDOUT 147

170 Module 4 Submodule 1 Targeted VCT intervention: Injecting drug users (IDUs) Explicit questions must be asked and a feedback on the injecting practices obtained. For known drug users, it is vital that the counsellor does not focus only on IDU behaviour. Implications of HIV rapid tests for hepatitis B virus (HBV) and hepatitis C virus (HCV) infections. Lack IEC materials (low literacy). Lack of means to reduce risk (e.g. needle exchange programmes). Barriers to effective behaviour change and support Client feedback (Casey, 1997) Client-centred supportive versus strategic evidence-based interventions Lack of IEC, NESP and condoms Poor pain control and management Lack of welfare referrals related to judgemental staff attitudes HIV testing in drug treatment facilities Routine offer to test for HIV Partners of inmates are often denied treatment Poor links to HIV services Lack of expertise for VCT, and post-vct care and support Nondisclosure in rehabilitation groups HIV peer support group and discrimination Psychological impact of HIV on IDUs Higher levels of global cognitive impairment Higher levels of mood disorders major depression (associated with opioid use) Higher levels of suicide attempts and completed suicides Complex drug interactions between antiretrovirals (ARVs), recreational substance use and psychiatric medications Considerations for post-vct support and care Immediate gratification needs clients may express a need to learn about alternative methods of pleasure or satisfaction. Peer group support from other clients with addictive behaviour. Significantly higher risk of suicide. Misattribution of mood disorders and differential diagnosis. HIV and drug-related cognitive impairment. Adherence, discharge care plans, social dislocation and loss of job or financial support. Those diagnosed in late-stage disease Cognitive impairment (HIV/substance) 148 HANDOUT

171 Module 4 Submodule 1 Targeted VCT intervention: Injecting drug users (IDUs) Poor planning ability Short-term memory Poor impulse control (frontal lobe) Disinhibition (frontal lobe) Poor frustration tolerance Counselling in such circumstances requires exploration of constraints and use of active problem-solving strategies. Health education and clinical interventions Transmission reduction education: Counsellors need to be aware of all practices and cultural issues related to use, e.g. shooting galleries, frontloading practices, etc. Harm reduction Overdose prevention and management Treatment options for dependency Evidence-based counselling interventions Structured problem-solving Exploration of constraints to safe sex/safe injecting Motivational interviewing Stages of change model Brief structured therapy Assessment for mood disorders and post-traumatic stress disorders (PTSD), which underlie both casual and addictive using patterns Suicide risk assessment high co-morbidity Best practices SASO-AIDS, Manipur SASO-AIDS, Manipur, founded in 1990 by a group of ex-drug users as a selfhelp group (SHG), integrates advocacy, prevention, intervention and homebased care. It provides preventive treatment and advocacy for people with HIV. Major activities include safe injecting and safe sex education; HIV pre- and post-test counselling; home visits for ill clients; free community doctor and clinic providing treatment for opportunistic infection (OI); home detoxification for HIVpositive clients; education; counselling and support for HIV-infected individuals and their family members; and referral to drug treatment services, hospital services or VCT services in other locations. The service also offers a telephone helpline, provides and promotes the use of condoms; and assesses and treats STIs. Professional staff supports SHGs and volunteer initiatives. Advocacy work aims to increase the levels of support for people living with HIV/ AIDS (PLHA), and addresses legal and social barriers to accessing prevention, treatment and care. HANDOUT 149

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173 Module 4 Module 4 Submodule 2 Targeted VCT intervention: Sex workers Handout Submodule 2: Targeted VCT intervention: Sex workers Session objectives At the end of the session, trainees will be able to: Understand the dynamics of sex workers and their sexual behaviours Appreciate sex workers vulnerability and the consequent psychosocial pressures on them Assess the counselling needs of sex workers Identify HIV/AIDS prevention and support strategies for sex workers WHO ARE SEX WORKERS? Sex workers form a diverse group of people. Hence, it is difficult to make generalizations about their behaviours and attitudes towards HIV prevention and care. For example, they may be IDUs, married women or men, indentured workers (i.e. people coerced into sex work and even taken to other countries), college students, unattached minors and may belong to any gender (i.e. male, female or transgender). They may work temporarily as sex workers or be full-time sex workers. A PROFILE OF COMMERCIAL SEX WORK IN INDIA Sakkubai (name changed) is an old female sex worker, with a mischievous smile, a good heart and hidden depths of pain. For most of her 50-odd years, she has sold sex for money on Falkland Road, one of the most notorious red-light districts in Mumbai. She has seen life s rough edges since she was shipped here at the age of 14 years from a small village in central India. Nothing prepared her, however, for the onslaught of AIDS. Blood tests among commercial sex workers (CSWs) in Mumbai have shown that more than half of them are infected with HIV, the virus that causes AIDS. In the past five years, Sakkubai has watched 13 of the women who worked in her rickety brick brothel die of the disease. So now she gladly works with the Saheli Project, a local AIDS prevention charity, distributing condoms to her sisters in the profession. Our lives, she explained, are more precious than money. For the customers typically, migrant labourers, cab and rickshaw drivers, truckers and students a visit to a Falkland Road brothel can cost from Rs 100 to Rs 200, or perhaps Rs 500 for a longer encounter. Women walking the streets outside the brothels will turn a trick for Rs 50 or less. HANDOUT 151

174 Module 4 Submodule 2 Targeted VCT intervention: Sex workers Despite India s outward image of sexual modesty, the scope of sex work in India s largest metropolis suggests a more complex picture, and a troubling one for those attempting to prevent an uncontrolled outbreak of AIDS. An estimated 4000 female sex workers walk the Falkland Road district alone. In nearby Kamatipura, an even larger flesh-trade bazaar, as many as women sell their bodies to willing buyers. Each woman may serve four to six customers per day. As such, the red-light districts of India s cities, and those of Mumbai in particular, have been engines, driving the growth of the epidemic throughout this nation of more than 1 billion. India today is logging nearly 1000 new AIDS cases per month, and an estimated 5.1 million are infected with HIV. In 1997, tests found that only 1% of Mumbai s female sex workers were infected with HIV. Just five years later, 54% tested positive. Sex is a 24-hour industry in areas such as Falkland Road (Mumbai) where, even in mid-afternoon, women stand impassively, like mannequins, outside row after row of curtained storefronts. Garbage on Falkland Road festers in picked-over piles, four feet high, and sewage pools in the gutters. The streets are crowded with pedestrians, honking taxis and the ubiquitous black three-wheeled auto-rickshaws, which buzz and jostle like bumblebees through Mumbai s neighbourhoods. In the dreary world of commercial sex in Mumbai, however, it is difficult to imagine the pressures facing female sex workers, who work there, not out of choice, but for survival in a land of extreme poverty. AIDS is a modern disease that has intruded on an ancient culture of commercial sex, where eroticism is enshrined in some of India s myriad religious traditions. Sakkubai came to Falkland Road as a devadasi, or servant of god, a young girl turned over to a life of sex work by her widowed mother. In a practice rooted in ninth century India, devotees of the goddess Yellamma may turn their daughters over to a temple god in gratitude for the child recovering from an illness. Married to this god as young teens, these girls are then deemed unsuitable for marriage to a man. Unable to wed a breadwinner, these girls are trained as sexual servants, and are literally sold to brothels in urban areas. Although the practice was outlawed in 1947, the powerful tradition lives on among Yellamma worshipers in the south Indian state of Karnataka, with the financial incentives of the commercial sex trade helping to keep the devadasi system alive. As a 14-year-old, Sakkubai thought she was being sent to Mumbai from her rural village in Karnataka to train as a nurse. But her friend, who accompanied her from the railroad station, was instead her agent. She was quickly initiated into life as a devadasi CSW. Most young girls in her position expect to live their entire lives in thrall to their landlords, the brothel owners who skim 50% of the money they earn. The female 152 HANDOUT

175 Module 4 Submodule 2 Targeted VCT intervention: Sex workers sex workers also share their earnings with admins, whose role is similar to that of a pimp procuring customers, providing food and shelter, and handling all their finances, including payments to landlords and payoffs to the police. Types of sex workers Street-based Lodge-based Brothel-based Family-based (travel km daily) An average age of 24 years Married and living with their husbands SEX WORKERS AND THE RISK OF HIV INFECTION The risk of HIV infection that a sex worker faces bears a high association to the context of sex workers realities and the conditions in which they work; these create a different understanding of what sex workers themselves perceive as risk. To get infected with HIV is just one of the many risks sex workers face. The threat of an unwanted pregnancy, physical injury or disability, STIs and HIV are even present. CSWs are often surviving in unsafe and economically unstable surroundings, which are associated with a wide range of different risks. This again is connected to a more or less calculated estimation of which risks to take and which not to take. In the first place, most sex workers are dealing with repressive laws that undermine potential individual and group strategies to minimize risks. The situation in countries where there are no laws that criminalize sex workers is not so much better, because the migrant status of CSW, since sex workers often belong to the community of illegal migrants, turns them into law offenders. For instance, rapists of sex workers are rarely convicted. Within that context, sex workers are disempowered, whereas other stakeholders are protected when they are violent towards sex workers. What comes through is the role of the police as the most threatening stakeholder. Arrests, sweeping of streets, ticketing, bribes and harassment are common practices, while on the other hand, sex workers have little to expect from the police in case of violence against them. Rape or violence experienced by sex workers is neglected or trivialized. In addition to police personnel, there is violence by pimps and brothel managers, at whose mercy many sex workers often work. Clients are another possible threat. HANDOUT 153

176 Module 4 Submodule 2 Targeted VCT intervention: Sex workers Some other factors contribute to the vulnerability of sex workers. In many cultures, women are subordinate to men, which hinders them from complaining about violence and taking action. Migrant sex workers are in an even more difficult position. Some sex workers use drugs and/or alcohol during their work, which again creates another context for violence and risk-taking. As most sex workers make a clear distinction between their professional and private lives, they may not deal with the risks they face in their private relationships in the same way as they do in their professional lives. However, they are often not less at risk. Looking at the entire landscape of risks and risk-taking, it is obvious that health risks are only a part of it and, more often than not, no priority at all. Field experience indicates that negotiation of condom use varies with the relationship a sex worker may have with the client. Regular clients and/or lovers are those with whom the sex worker has a certain bonding. These clients are viewed as relatively safe and condoms may not be used in such an interaction. Sex workers have particular needs, and VCT and psychosocial interventions should be tailored specifically to these to ensure effectiveness. It is crucial that VCT services reach this vulnerable population; both to protect sex workers from HIV and other STIs, and to prevent transmission to their clients and partners. There is increasing evidence that targeted programmes to reduce the transmission of HIV infection within core groups are feasible and effective, and have led to successful risk reduction and decreased levels of infection. Effective VCT interventions need to recognize sex workers not only as sex workers but also recognize the other dimensions of their lives as partners, wives or husbands, and as parents. There are different types of sex workers street-based, lodge-based, brothel-based, community and caste-based, and even family-based. For most, sex work is a means of part-time livelihood. Most sex workers are young and married, and live with their husbands and children. VULNERABILITY TO HIV INFECTION Sex workers vulnerability to HIV infection is obvious. Sex workers are involved in a variety of sexual activities to satisfy their customers. Though they prefer only penetrative vaginal sexual intercourse, they are forced to have anal, oral and even group sex. Thus, not only do women sex workers have to have multiple sex but sexual abuse and sexual exploitation are also very common. Their vulnerability to STI/HIV infection increases due to Involuntary/coercive sex Sexual abuse/sexual assaults Sexual exploitation Sex workers relationship with clients 154 HANDOUT

177 Assessing vulnerability to HIV/AIDS Module 4 Submodule 2 Targeted VCT intervention: Sex workers The following factors play an important role in assessing the vulnerability of sex workers to HIV/AIDS: Street-based and lodge-based sex workers are more exploited. The number of sexual partners. The number of sexual encounters a day, the choice of nonpenetrative sex (safe sex practices. Even for those who have a choice, access and availability of condoms is also a major determining factor, as most street- and highways-based women sex workers often face difficulties in obtaining condoms. SERVICE DELIVERY SETTINGS Different types of sex workers will access VCT and psychosocial services in different environments. There is no single, universal model for providing prevention and care activities to sex workers, their clients and partners. Models will need to be adapted to different situations. Assuring anonymity for sex workers and creating an environment where they feel reassured that their activities, which are often illegal in many countries, will not be disclosed to authorities is important to encourage them to access VCT and psychosocial services. For street-based sex workers, outreach services may facilitate access, while for sex workers in places such as bars and clubs, liaison with these places may be appropriate. In some settings, it can be helpful to integrate these services with other health care and community services. It is important for sex workers to have access to sexual health services; however, the question of whether it is better to set up special services for vulnerable populations or to integrate STI services into primary health care (PHC) services remains unresolved. Different service delivery options include: Mobile/outreach, i.e. services are taken to the sex workers or their clients Free-standing VCT STI clinics Prisons Refugee/migrant detention centres Integration of VCT services into general health settings Drug and alcohol services Gay and lesbian health services Women s health centres Family Health International (FHI) recommends that HIV prevention activities among sex workers, their clients and partners are most effective when the service includes at least the following three key elements rather than provision of information alone: HANDOUT 155

178 Module 4 Submodule 2 Targeted VCT intervention: Sex workers Information and behaviour change messages. Condoms and other barrier methods. Sexual health services. Proven strategies to increase the effectiveness of targeted services include: Use of informal contacts, key informants and leaders to access the population Peer health promotion and education Outreach activities Social marketing and distribution of condom Accessible sexual health services Best practices Mobile vans: In Tamil Nadu, numerous surveys by NGOs have shown that sex workers generally work in areas far from their homes and prefer to live anonymously in their own neighbourhoods. As neighbourhood clinics would probably draw too much attention, NGOs have tried to set up ambulatory clinic vans so that sex workers can access STI treatment outside their communities. Peer health educators and outreach workers: In Chennai, the AIDS Control and Community Education Programmes Trust has started an outreach programme for sex workers in the central railway station area. Peer health educators will provide face-to-face prevention information to sex workers with STI complaints and refer them with a letter to the public hospital for free treatment. The referral letter also helps to ensure that the women are well treated by the clinic staff. Brothel-based STI services: In many countries in Asia such as Thailand, Indonesia and the Philippines, commercial sex establishment owners contract private practitioners to visit brothels to provide regular check-ups and treatment of their employees. PROGRAMMATIC RESPONSES The needs of different types of sex workers require a range of programmatic responses including access to VCT. Counselling can be seen as one component. However, the background of sex workers has indicated that any programme response should aim at: Removing the violence, stigma and other social barriers. Facilitating them to come out freely. Then the programme shall work towards Gaining confidence among sex workers Instilling in them confidence in the system of care and service PREVENTION COUNSELLING Counselling to prevent transmission can cover a range of strategies and activities to 156 HANDOUT

179 Module 4 Submodule 2 Targeted VCT intervention: Sex workers convey information and behaviour change messages. The objective is to provide sex workers with knowledge of HIV transmission and ways to reduce the risk of transmission, for example, through alternative safe sex practices, use of male or female condoms and lubricants, how to identify symptoms of STIs, and clarification of any misunderstandings about unsafe traditional practices or beliefs. Furthermore, counselling can play an important role in developing the communication and negotiation skills of sex workers so that they can successfully negotiate safe sex practices with: Clients, Personal relationships/partners, and Brothel owners to permit condom usage. In particular, behaviour change messages are important to convey a message about the consistent use of condoms, rather than a judgement based on the extent to which the sex worker is familiar with the client. It is argued that relationships of sex workers other than their professional ones may be as risky or even more risky for HIV and STI transmission as they have less control and less possibilities for negotiation. There is emotional involvement as the relationship becomes more than just a commercial arrangement and sex workers put aside their professional attitudes and control. Counselling needs to address the needs of sex workers holistically rather than solely focusing on their professional sex work activities, e.g. strategies to help sex workers negotiate safe sex not only with their clients but also with their boyfriends or long-term clients who they feel they can trust, and may not consider they need to use condoms with. Some sex workers may be effective in negotiating safe sex with their clients, but not with their partners with whom they have more intimate relationships. Peer-based programmes can be highly effective both as an entry point into the affected population and as means to influence their peers through their own experiences. Other example of creative strategies have included: compiling a booklet of responses to a survey of female sex workers about all their questions on HIV and STIs; and training peers as AIDS educators and distributors of condoms. Peer-based programmes will often require some training for the sex workers involved. Peer group approach Identification of peers among sex workers Peer needs assessment Training and exposure to peers The peer group approach demands understanding of the psychosocial pressures among sex workers. HANDOUT 157

180 Module 4 Submodule 2 Targeted VCT intervention: Sex workers Peer group issues The issues addressed here are Identity and maintaining its confidentiality Empathy towards them De-addiction practices Emotional balance Follow-up Referral/treatment Disclosure of HIV status Care and support Counselling strategies In these circumstances, counselling goes beyond the four walls. While ensuring that confidentiality and privacy is maintained, VCT needs to address the issues of sex workers through Group counselling, Community counselling, and Peer counselling. Thus, VCT strategies should expand into the sex workers community. VCT should examine the possibilities to liaise with other service agencies such as nongovernmental organizations (NGOs)/community-based organizations (CBOs) to facilitate access of sex workers to VCT services. Building partnership with other organizations is important. With limited resources, it is necessary to ensure that VCT services are linked with other service providers NGOs, peripheral hospitals, private clinics and appropriate measures are taken. COUNSELLING HIV-POSITIVE SEX WORKERS Counselling HIV-positive sex workers can assist them with: Deciding about whether to disclose their HIV status. Strategies to disclose their status to partners. Ongoing support and planning for the future. Referral to support programmes. Alternative income-generating projects. Income-generating projects can provide sex workers with an alternative means of income in situations where sex work is often associated with poverty and lack of vocational options. 158 HANDOUT

181 Module 4 Submodule 2 Targeted VCT intervention: Sex workers SEX WORKERS AND PSYCHOLOGICAL MORBIDITY A significant proportion of this vulnerable population can have a history of mood disorders and personality disorders. They may be associated with substance abuse, or possibly have a history of abusive relationships or child sexual assault. KEY ISSUES IN SERVICE PROVISIONS Interventions among sex workers may provoke several issues at the media, police and public health levels. The utmost attention is required for the following issues: Mandatory and compulsory testing of sex workers for HIV when arrested in brothel premises. Unmindful sensational news flashed over the media causes misery and harm to the normal live of sex workers in their neighbourhood, forcing them to go underground and thus making them more vulnerable to infections. Drug and alcohol use, and related transmission risk behaviour among sex workers. HANDOUT 159

182 Module 4 Submodule 2 Targeted VCT intervention: Sex workers 160 HANDOUT

183 Module 4 Module 4 Submodule 3 Targeted VCT intervention: Youth and children Handout Submodule 3: Targeted VCT intervention: Youth and children Session objectives At the end of the session, trainees will be able to: Appreciate the importance of VCT for youth and children Discuss the modalities of HIV testing for children Understand specific counselling skills that can be used with children WHY TARGET YOUNG PEOPLE? Young people encompass a significant demographic of the population who affect HIV trends in any country. Young people years of age account for more than 50% of all HIV infections worldwide (excluding perinatal cases) and more than 6000 young people are newly infected with HIV each day throughout the world. However, only a fraction of them know that they are infected. In India, the figures were between 0.4 and 0.82 for young women and between 0.14 and 0.58 for young men. Sexual activity begins in adolescence for the majority and in many countries, unmarried girls and boys are sexually active before the age of 18 years. Yet, VCT services are not always designed to target the specific needs of youth. This represents a missed opportunity not only to provide testing and counselling but also to provide behaviour change communication about safe practices during a person s formative years. In areas where the spread of HIV/AIDS is subsiding or even declining, it is primarily because young men and women are being given the tools and incentives to adopt safe behaviour. Access to information about safe sex can be more difficult for the youth than adults due to its sensitive nature, particularly in cultures and societies where information about sex and sexuality is not considered appropriate for youth. Young people may rely on their peers to learn about sex, which can result in misconceptions about sex and HIV transmission. Peer influences are particularly pronounced in adolescents and youth. They tend to have a perception of being invincible which can lead to greater risk-taking. Therefore, VCT services can play a vital role in providing information and skills to youth to negotiate safe sex, which may not be accessible through the general media or through schools. Young people are not a homogeneous group, thus the principles of other targeted interventions also need to be applied. Some groups of youth stand at a greater than average risk of contracting HIV/AIDS. For example, men who have sex with men (MSM) (see Module 4, Submodule 4), IDUs (see Module 4, Submodule 1), HANDOUT 161

184 Module 4 Submodule 3 Targeted VCT intervention: Youth and children mobile populations (see Module 4, Submodule 5), street youth and adolescent sex workers (see Module 4, Submodule 2). In many countries, homosexual sex is illegal between men who are less than 18 years of age and therefore MSM below 18 years of age may be reluctant to access services. SERVICE ISSUES FOR YOUNG PEOPLE Most countries have legislation that requires parental or guardian s consent before a medical procedure can be conducted on individuals below the age of consent. This may include HIV testing and therefore affects the nature of services offered to the youth. It is important that relevant legislation and any other national guidelines are understood so that the VCT services can help the client make an informed choice about their own policies regarding consent for VCT and disclosure. It is preferable that young people are allowed to provide consent (without parental consent) for VCT, as parental consent is a barrier to uptake of VCT by some young people. In testing for HIV, ensuring medical confidentiality is essential and the right to confidentiality is recognized by the UN Convention on the Rights of the Child. Other legal considerations for VCT for youth include the mandatory notification of child sexual assault (statutory rape) and those indentured to sex work. PSYCHOSOCIAL ISSUES FOR YOUNG PEOPLE Psychosocial characteristics of youth, which can influence the provision of VCT, include the following: Belief in their own invincibility/inaccurate risk perception Lack of ability to negotiate safe sex Difficulty in disclosing status to parents, partners, etc. Abuse by health-service providers Belief that risk behaviour is a normal part of adolescence Greater peer influence Image-conscious Young people may react impulsively and the risk of suicide should be considered. Others may feel cheated by life and seek what they see as revenge through rebellion and risk behaviour. It is essential to identify sources of support for these young persons. If parents are to be the main providers of support, they will also need counselling to enable them to cope with their own emotions. CHILDREN INFECTED BY AND AFFECTED BY HIV The overwhelming majority of infected children acquire HIV infection through mother-to-child transmission, which can take place during pregnancy; during labour; during delivery; or after birth, through breastfeeding. In the absence of any intervention, rates of mother-to-child transmission of HIV can vary from 15% to 162 HANDOUT

185 Module 4 Submodule 3 Targeted VCT intervention: Youth and children 30% without breastfeeding and can vary from 30% to 45% with prolonged breastfeeding. Prevention of parent-to-child transmission (PPTCT) is addressed in Module 3, Submodule 1. All children born to HIV-positive mothers will test HIV-positive at birth when the standard HIV antibody test is used. It is only by about 18 months of age that the standard HIV antibody test will be able to reliably reveal whether a child is HIVinfected or not. There are other types of HIV tests that can tell whether an infant less than 18 months of age is infected with HIV (for example the polymerase chain reaction [PCR] test), but these may not be widely available and are expensive. Until parents find out whether their infant is infected or not, they will feel stressed, worried, anxious, tense, sleepless or easily irritated. VCT services can play an important role in helping parents decide about whether to inform a child about their own or a family member s HIV status, and when to do it. Some considerations are listed below. The maturity and health of the child If the child is very young, they will not understand the stigma and discrimination associated with HIV/AIDS. The truth can often be less threatening for a child than the fear of the unknown. Sometimes, if children are not informed, they may have suspicions because of conversations they have overheard or differences in the home environment. Children can often make up their own complicated and incorrect explanations. Avoiding talking to a child about illness in the family may make it easier for the parent to cope, but it can make the child feel anxious and guilty, and upset them. If the child cannot talk about their fears, it can lead to many problems If they are adolescents or youths (13 18 years of age), they are reaching an age where they may be likely to become sexually active, and will need the knowledge and skills to be able to take responsibility for safe sex practices Children are not just bystanders in the AIDS pandemic. Whether infected or affected, they have major psychosocial needs of their own. Frequently, however, these needs are neglected. This is often because adults fail to understand how children are emotionally affected and how they can be helped. Adults find it difficult to talk to children about sensitive subjects such as sex, illness and death. Their instinctive response is usually to protect children from painful topics. But this can create a conspiracy of silence and fear, or a situation where adults fail to acknowledge that children are already experiencing anxiety and pain, and have to cope with these feelings on their own. Keeping information about HIV and AIDS from children is difficult, if not impossible. It can also have negative consequences. We must be aware that children have needs, perceptions, responses and reactions different from those of adults. So, while being open and honest during counselling, the methods, language and information used should be appropriate for the specific age and developmental level of the child in question. HANDOUT 163

186 Module 4 Submodule 3 Targeted VCT intervention: Youth and children HIV TESTING FOR CHILDREN HIV testing brings up many complex issues. Counsellors need to be aware of these issues and discuss them with children and their families. It is important to consider both the advantages and disadvantages involved. Advantages of testing If children know they are HIV-positive, they can Access information and services to prolong their life, for example, by improving their diet and exercising; Gain the support of others in a similar situation, for example, by joining a support group of peers; Be helped to understand how to avoid infecting others; Become a role model by showing that you can live well with HIV; and Experience the relief of knowing the truth rather than being worried and stressed about the unknown Disadvantages of testing If children know they are HIV-positive, they might Not fully understand the situation. They may only understand the negative implications and not be aware that they can live positively. Disclose their status without being aware of the possible consequences. Feel angry and resentful, or get depressed and lose hope. When should a child be tested Ideally, the child decides when to get tested, with guidance from the family (where appropriate). In practice, parents might consider testing their child if They themselves are HIV-positive and their child is 18 months of age and above; The child is sexually active, or there is strong evidence of sexual abuse; and The child has been at risk due to unsafe blood or unsterilized needles. A confirmed HIV diagnosis would have important implications for the medical treatment of the child. Counselling is intended to Help children cope with the emotions and challenges they experience when they discover that they are infected with HIV; Help children with HIV make choices and decisions that will prolong their life and improve their quality of life; and Help children cope with the emotions and challenges they face when HIV/AIDS affects them, i.e. when a family member, friend or neighbour has HIV/AIDS. 164 HANDOUT

187 Module 4 Submodule 3 Targeted VCT intervention: Youth and children Counselling children includes Helping children establish supportive relationships Helping children tell their story Listening attentively to children Giving children correct and appropriate information Helping children take informed decisions Helping children recognize and build on their strengths Helping children develop a positive attitude towards life Counselling children does NOT include Taking decisions on behalf of children Judging them Interrogating them Blaming them Preaching or lecturing Making promises you cannot keep Imposing your own beliefs Arguing with the child Should a child be informed about being tested? Children have the right to voice their opinions about issues that affect their lives. In practice, exactly what a child should be told depends on their individual level of development and emotional maturity. Counsellors face the challenge of finding a balance between listening to the child s concerns, respecting the parents wishes and ensuring the child s overall welfare. To achieve this balance, you need to tackle the following issues: Make sure that you are well informed about the laws regarding the age of consent (18 years) for HIV testing. Discuss with the parents what information they have given to the child beforehand so that you can reinforce what has already been said, correct any misconceptions and introduce additional details. Enable the child to feel in control and listened to. Give the child information appropriate to their level of development and, using tools such as drawing and play, explain what an HIV test involves. Recognize that an HIV test may raise different issues for children of different ages. For example, young children might be most scared of the physical pain involved in having their blood taken. Give honest answers to children and do not hide information, even if it is difficult for you to say and for them to hear. Pre-test counselling for children Create a friendly and private environment. If adults are present and the child is comfortable with that, proceed. If the child is not comfortable, ask the adults to wait outside. Gain the child s confidence and trust so that the child can speak freely about HANDOUT 165

188 Module 4 Submodule 3 Targeted VCT intervention: Youth and children himself or herself, the family, and HIV and AIDS. Explore the child s feelings about being in the session and address any fears the child might have. Assess the child s knowledge and understanding of HIV and AIDS, and find out what else the child wants to know. Answer the child s questions accurately and honestly, but remember that the information you provide must be appropriate to the child s age and level of development. Explain the testing procedure accurately. Explore and try to address any worries, fears and anxieties that the child might have about the process. Do not make a false statement to try to protect them (such as promising that the blood test will not hurt). Explain the possible results of the test negative, positive and indeterminate and what each might mean for the child. Discuss who will receive the results, how they will be given and who will provide support, especially if the result shows that the child is HIV-positive. Stress the benefits and importance of coming back for the test result. If the child does not seem ready for a test or asks for more time, offer the child a further pre-test session. Encourage the person identified for support to come along for the next session too. Post-test counselling for children In a post-test session, a child should not be rushed into receiving the result, but should be gently supported to accept the truth. One or more sessions should be offered to a child to cope with the result, especially if it is positive. As a counsellor, you should keep the following considerations in mind: Remember that even if the child has come alone, family consent is still needed before proceeding. As with pre-test counselling, gain the child s confidence and trust so that the child is able to speak freely about himself or herself, the family and HIV and AIDS. Also, try to create a friendly and private environment. Check if the person who was previously identified to provide support is present. If that person has not accompanied the child, ask the child if he/she would like to take another appointment or if someone else can provide support. Briefly re-assess how much of the information given in the pre-test session the child has retained. Assess if the children are ready for their result. Check any preconceptions the children have and explore any fears. If the children say they are not ready, ask when they think they will be ready and plan accordingly. Whether the result is positive or negative: Allow the child some time to react. Be supportive throughout the reaction period, allowing tears, silences, anger and despair. 166 HANDOUT

189 Module 4 Submodule 3 Targeted VCT intervention: Youth and children Answer the child s questions. If the child asks for further information, provide it yourself or refer the child to another person who can help him/her. Make sure that the children and, if present, their families understand and accept the result. Ask them to say the result out loud and to repeat the key points that you have made. Also, ask the children about their immediate plans to explore how they will access support from others. Be aware of the children s level of energy and concentration. If they are ready to receive more information and support at this session, continue. If not, arrange another session soon. Disclosure of the HIV status Disclosure is the process of sharing information about a person s HIV status with others. Whether it is the child or a member of the family who is HIV-positive, counsellors need to think very carefully about the disclosure of an HIV-positive status to a child. This is because the disclosure may have a number of implications depending on: How much information is disclosed, To whom the status is disclosed (for example, the child, siblings, relatives, the school, caretaker or the community), When the status is disclosed, and How the status is disclosed. Counsellors and parents often find it difficult to explain to children that they or someone they love is HIV-positive. The following reasons may be attributed to this dilemma: Traditional and cultural taboos, such as talking about sex, death and witchcraft, which prevent adults from talking openly and honestly with children. The possibility of evoking strong emotional reactions that may make talking about the child or a relative s status difficult. Not knowing exactly what to say to the child and fearing being asked questions that are difficult or impossible to answer. The adult s desire to protect children from bad news. With support, children are usually able to deal with the realities of HIV and AIDS. Problems are more likely to arise when adults attempt to hide the truth and hide their emotions. When children are forced or encouraged to hide their emotions, they may act them out in their behaviour, for example, wetting their bed, lying, having frequent headaches or stomach upsets. By giving children simple, concrete and direct information (relevant to their age and maturity), their confusion, fantasies and nightmares can be avoided. It also means that children will not discover information through rumours or jokes in the wider community or at school. HANDOUT 167

190 Module 4 Submodule 3 Targeted VCT intervention: Youth and children Ensure the following when a child is HIV-positive: It is vital to provide a supportive environment for the disclosure of a child s HIV status, whether negative or positive. This includes ensuring that children can express their emotions freely and openly. Ideally, parents should be the ones to tell children the result of their HIV test. A counsellor may need to help parents explain things, and to provide practical and emotional support. The time to disclose an HIV-positive status to a child should be determined by the child s level of development and emotional maturity, combined with the readiness and comfort of the parents to talk about such a sensitive topic. In practice, children as young as five or six years may be old enough to understand about living with HIV. Disclosure of the result of an HIV test to young children should be a process. Parents should start the process as soon as they know that the child s HIV test result is postive, but the speed and way in which they proceed will depend on the individual child and circumstances. When a parent or sibling is HIV-positive, they often find it difficult to talk to children about their status. As a counsellor, you can facilitate the family to cope better. In practice, you need to ensure the following: Encourage the children to discuss their anxieties, for example, help them to express fears for both the HIV-positive person and for themselves (such as that they will be left alone). From the very beginning, help children establish support systems so that they are in place if the parent or sibling should become ill. Gently explore thoughts about death and life after death. Talk openly, but in a way that is appropriate for the children s age as well as their cultural and religious background. Ensure that the children know how to avoid HIV infection, for example, ensure that they can care for a sick family member safely, and that they understand safe sex practices if they are sexually active. Encourage children to join their HIV-positive parent or sibling in positive living. This helps create a sense of joint action, and helps children stay healthy and occupied. COMMUNICATING WITH CHILDREN Children often find it particularly difficult to recognize the fears and emotions they are experiencing, let alone put them into words. Communication is the foundation of the relationship between a counsellor and a child. For this reason, practical ways to communicate must be found. During counselling, children who are HIV-positive or affected by HIV and AIDS should never be forced to tell their story. If a child cannot communicate something, 168 HANDOUT

191 Module 4 Submodule 3 Targeted VCT intervention: Youth and children there will be good reasons for not being able to do so. The reasons might include: Traditions and customs that pose a barrier to their communication. The child may feel embarrassed or ashamed to discuss HIV and AIDS with adults because it relates to taboo subjects, such as sex. The child may be too young to put their feelings or experiences into words. In practice, a counsellor must always consider the age of the child, how much they know, and their ability to express their knowledge or emotions. A child may not open up fearing hurting those they love. Using the right tools It is the counsellor s job to help the child overcome these barriers and to communicate freely. As a starting point, you need to meet the child at their level. This involves using creative and non-threatening methods to explore sensitive issues and helping the child to express their feelings. Some tools that can be used by counsellors are listed below. Parents may also be trained to use the same. Drawing Drawing can be a powerful activity for opening hidden cupboards in a child s life. Drawing enables a child to communicate their emotional state without having to put it into words. Most children enjoy drawing, and it is a useful and practical tool for counselling. When using drawing as a tool: Give the child different materials to use, such as pencils, pens and paints. Ask the child to draw something related to what you would like them to explore. For example, ask them to Draw a picture of your family having fun or Draw a picture of something that makes you angry. Gently follow up by asking the child to describe what is happening in their drawing. Use open questions to encourage them to talk more about what they have drawn and why. For example, How do the people in the drawing feel about what is happening? Storytelling When a child is finding it difficult to talk about painful issues, listening to a story about someone in a similar position can be very comforting. It can give the child the sense of being understood, and it can help them to recognize that they are not the only ones to be in the position they are in currently. A story can also serve as a useful tool for problem-solving around their own situation. When using storytelling as a tool, it is helpful to do the following: Use a familiar story, fable or folktale to convey a message to the child, perhaps using animals to represent humans. Avoid using real names or events. HANDOUT 169

192 Module 4 Submodule 3 Targeted VCT intervention: Youth and children At the end of the story, encourage the child to talk about what happened. For example, ask about the message of the story to confirm that the child has understood the story s relevance. If helpful, ask the child to make up their own story, based on a topic that you give them. For example, Tell me a story about a little girl who was very sad. Drama Drama or role-play is an excellent way for children, and friends, siblings and other family members, to raise issues they want to communicate to others, but find difficult to discuss directly. When using drama as a tool, it is helpful to: Give the child a topic to perform, such as A day in my life, that is related to issues you want to explore with them. After the performance, encourage the child to discuss what happened in the drama and what issues came up. Ask questions to explore specific areas, such as What was the happiest/saddest part of the day? Play Adults often think play serves no serious purpose. Nevertheless, play is an important way for children to explore their feelings about events and make sense of their world. When children play, much of their activity involves imitation or acting out, which helps the counsellor to begin to understand what type of emotions they are experiencing. When using play as a tool, it is helpful to: Give the child a variety of play materials, including simple everyday objects (such as boxes, string and sticks) and toys (such as human and animal figures, cars and doll houses). Ask the child to show you parts of their life using the play materials. For example: Show me what you like to do with your family, or observe how the child plays with a dollhouse and the figures in them. Follow and observe what the child is doing and do not take over the play. If you want to check that you have understood what the child is communicating, make comments, such as I see the mummy doll is so sick that she cannot get out of bed, and see if the child agrees. If the child gets stuck and cannot proceed further, ask him or her questions such as What is going to happen next? or Tell me about this person (while pointing to the character that you are interested in). Such questions can help them to continue. ISSUES FOR COUNSELLORS Working with children who are HIV-positive or who are affected by HIV and AIDS can be challenging and highly emotional, even for an experienced counsellor. The following personal and professional issues that you should consider: 170 HANDOUT

193 Module 4 Submodule 3 Targeted VCT intervention: Youth and children It is vital to be honest about your own feelings. These might include doubts about your own HIV status, fears about the status of your children and concerns about working with children facing death or bereavement. You must consider how such feelings might influence your behaviour and counselling skills when working with children. You need to separate emotional involvement with the families you are working with from emotional issues in your own life. To do this, you need to have your own support system in place, such as individual counselling or supervision by a professional colleague. You need to be aware of your own opinions about and reactions to the cultural, traditional, religious and gender norms that influence children with HIV or children affected by HIV and AIDS. You need to consider which norms it would or would not be appropriate to raise and/or challenge during counselling. When dealing with death and dying, you might be tempted to impose your own religious beliefs on the children you are working with. You need to be very cautious about this, as your beliefs may not be the same as the children s, and it may make them feel confused and pressured. As a counsellor, you need to: Reassure the children and their family that things discussed during counselling sessions will remain confidential. Explain when confidentiality might be broken, such as in life-threatening situations affecting the child s physical welfare. Explore the children s underlying fears about disclosing information and empower them to talk freely about the difficulties involved in keeping information confidential. Encourage the children and their family to reach a consensus on confidentiality. If this is impossible, get permission from them as individuals to share the relevant information with the others involved. Ensure that all necessary information is available to you. Otherwise, it might be difficult to get others to back you up or to convince the authorities to take action. Agree on issues of confidentiality with the children, such as whether they are uncomfortable with the staff at the centre knowing their names. THE COUNSELLING PROCESS To counsel children, you must establish a good relationship with them from the very beginning. This is often called joining. It includes greeting the children and talking about something that is easy for them to discuss with you. As you talk together, they can get to know you and decide whether they are comfortable with you. Some examples of how to join with children of different ages include: Children under 5 years: Get down on the floor with them and find a game they like to play. HANDOUT 171

194 Module 4 Submodule 3 Targeted VCT intervention: Youth and children Children of 6 12 years: Find a fun, relaxing activity to do together with them, such as discussing a magazine or an interesting object. Teenagers of years: Find out about their interests, such as sports or music, and ask them about their likes and dislikes. Strategies for working one-to-one with a child Follow the usual good practice for counselling work, such as preparing yourself for the session, creating a welcoming environment and keeping a record of important developments. Recognize that whatever your training and school of thought about counselling, your work needs to be child-centred. This means seeing counselling as a two-way process, with the child at the heart of the process as an active participant rather than just a recipient. Establish boundaries of confidentiality with the children. Continually acknowledge and validate what children feel and say about their situation, rather than making presumptions or waiting to hear what adults have to say. Observe what the children do and say. For example, what are their body language and eye contact telling you? Encourage children, whether infected or affected by HIV and AIDS, to access support in addition to counselling sessions, for example, from a SHG comprising their peers. This will help ensure that they do not become over-dependent on you or your sessions, and that they have ongoing sources of support. Strategies for working with a family Family counselling can include having different sessions with various family members. This might mean working with one or both parents, one parent and a child, or children on their own. In this context, you need to: Follow the usual good practice for counselling work Discuss the advantages and disadvantages of each type of approach, and agree with the child and family who should and should not be present in each session. Recognize that you often need to work in different ways with different family members and help them deal with their individual issues. This might involve using different methods. For example, a child might like to use drawing, but a teenager might prefer drama. Acknowledge that, in practice, the family is often the entry point for a counsellor to work with children. So, before you start work, it is important to establish a good relationship not only with the child and also with other family members, especially the parents. Agree and maintain confidentiality about the issues raised by all those involved, including the children and parents. Work with the children and their families to agree on creative and supportive ways to explore family relationship problems. 172 HANDOUT

195 Module 4 Submodule 3 Targeted VCT intervention: Youth and children Explore with parents how and why traditions can make it hard for children to talk openly. If necessary, involve someone else, such as a youth worker, to facilitate child parent communication. Build a sense of team spirit. For example, ensure that the sessions do not focus solely on the child or family member who is HIV-positive, but that they also involve discussions about how all of them feel about family life, and HIV and AIDS. Encourage parents to continue discussions with the child and other family members at home. Encourage children and family members to access other support in addition to the counselling sessions as, for example, from a SHG. This will help to ensure that they do not become over-dependent on the counselling but have ongoing sources of support. Ongoing counselling and support Whether it is a child or a member of the child s family who is HIV-positive, remember that the role of a counsellor does not stop with the disclosure of HIV status. In fact, a counsellor s work may be even more vital over the following months and years. This extends to the stage when the family faces sickness and bereavement. Traditional approaches to counselling When families expect you to provide counselling in a more traditional manner, you need to: Act as an intermediary to facilitate dialogue between the child and the family to ensure that the wishes of both are considered. Explore with the child and the family the type of outcomes both positive and negative that can result from following traditions and customs. Include significant and relevant people in the counselling process, such as grandparents, community leaders and traditional healers. Help families get community support so that they can perform any cultural rituals that are necessary. HIV and AIDS in the family Once children know that they or a member of their family is HIV-positive, they are emotionally affected. Counsellors often witness a range of strong emotional reactions, from grief to anger, denial to despair. It is useful to understand the different ways children might react to the arrival, or return, of HIV and AIDS in their family and the ways in which counsellors might deal with these reactions and support the child and the family. Denial is when someone chooses to ignore or disbelieve facts. It is often a temporary coping mechanism in reaction to a HIV-positive test result; the individual does HANDOUT 173

196 Module 4 Submodule 3 Targeted VCT intervention: Youth and children not or cannot accept the reality of the situation. For example, if a parent has tested positive, a child might behave as if nothing has happened, because the child does not want to face the possibility that his/her parent might become sick or die. As a counsellor, you need to: Accept the child s denial and allow the child time to accept the positive result of the HIV test; Explore any underlying fears that may be causing the child s denial; Acknowledge the child s fears and explain that these are normal; Reinforce the child s knowledge about HIV and AIDS by giving information in a simple manner, especially about how positive living can prolong life; Irrespective of who is HIV-positive, motivate the entire family to live positively by advising them on diet, exercise and stress management, as well as ensuring early treatment of OIs; When children are ready, refer them to peer support groups or other relevant resources in their local area. 174 HANDOUT

197 Module 4 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) Handout Submodule 4: Targeted VCT intervention: Men who have sex with men (MSM) Session objectives At the end of the session, trainees will be able to: Appreciate the need to adapt VCT to the specific needs of MSM Explore the barriers to VCT for MSM Identify VCT strategies and complementary strategies to reduce the specific HIV transmission risk behaviours of MSM Explore strategies to increase access to VCT for MSM Definition The term men who have sex with men (MSM) covers all the groups and subgroups of men or biological males who have sex with other men/biological males. HIV/AIDS programmers, who were concerned by the gay identity politics in the western hemisphere in the late 20th century, developed the term MSM. In many African and Asian countries, the term homosexual is not understood and does not have an equivalent in native languages except in socially derisive terms. Homosexual is a medical term invented in 1869 by Austrian clinical psychologist Karoly Maria Kertbeny to define a person who has sex with a partner of their own sex. As the behaviour was to be targeted by HIV/AIDS prevention strategies, the term MSM excluded identity politics and reduced discrimination against the individuals who practised this socially stigmatized behaviour. Also, the emergence of gay culture in western societies during the 20th century encouraged the belief that people are either gay (homosexual) or straight (heterosexual). This binary sexual worldview is not understood in India where subgroups exist such as hijras described as tritika laingik (third sex). Some of the Buddhist and Jain chronicles of ancient India describe numerous male nonheteronormative genders such as napunsaka, kliba, pandaka and ardhanareeshwara. Though gay, bisexual and straight may be standard terms understood in modern identity sexual politics, they are not practical to describe life in India where men have sex with other men but do not allow such behaviours to determine either their social or sexual identity. HANDOUT 175

198 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) CATEGORIES OF MSM In India, MSM can be broadly divided into two categories: Men whose sexual identity is focused around issues of gender conflate gender and behaviour. This can be summed up thus: men penetrate women who are effeminate. Hence, if you are effeminate, then men penetrate you. This includes groups who call themselves hijras, kothis, satla-kothis, khada-kothis, jogappas, jogtas, zenanis, etc. Such men/males may or may not have sex with other men but cross-dress or dress in women s apparel, and identify as women/females at some point in their life or throughout their lives. Then there are men who clearly desire men and have sex with other men out of choice or because it is a preferable sexual activity due to opportunistic reasons (employers demanding sex from their employees such as hotel managers from hotel boys), or for occupational reasons (male sex workers) or because they are in a situation where they have no choice but to have sex with other men (prisons, monasteries, remand homes, orphanages). There are two subgroups among such men/males. The first evolves a political identity around their sexuality and may call themselves gay or queer, and form political/ social ideologies around their sexuality, whereas the second prefer not to identify with their behaviour though they may understand the implications of their samesex behaviour. Possibly, they do not wish to carry the baggage of socially distracting labels such as homo, hetero, etc. It is important to remember that men/males in both categories of MSM are bridge populations as they do have sex with women partners and their female spouses. They therefore can be classified as bridge populations. Hence, both history-taking and contact-tracing, as well as farming questions during sexual history-taking, should be done carefully. THE HUMSAFAR MSM CIRCLE Given below is a graphic developed by the Mumbai-based Humsafar Trust (HST) that works around male sexual health issues. The effort here is to make the MSM sector comprehensible to workers in public health and social work. None of these groups are exclusive or inflexible and one may flow into another (e.g. migrant labour may be behaviourally bisexual and kothis could be sex workers). Each group has its own dynamics and therefore its own context for prevention programmes. The yellow (central circle) graphic is the world of MSM and all the smaller circles are subgroups of MSM. Notice that only one group is completely within the MSM world that of castrated hijras (nirvar hijra, bhand, mausi, khada kothi). 176 HANDOUT

199 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) Fig. 4.1 MSM subgroups in India: The Humsafar MSM circle The MSM subgroups on top of the MSM circle are all based on gender. The MSM subgroups at the bottom are based on sexual behaviours. The ones on the right are MSM subgroups that are vulnerable due to their workplace situations while the ones on the left are bisexual categories of bridge populations. Hijras are transgendered persons who are part of Indian ethnocultural clans called gharanas. Transgendered males are those who cross-dress and are involved with gender self-allocation. In short, such males wish they could become biological females. In India, such men/males form highly visible communites called hijra gharanas. The ritual categories within the hijra gharanas are akwa and nirwaan. Akwa are men preparing for castration after rites between the guru and student (chela). The nirwaan hijras are ritually castrated men who then become a part of ritual houses called gharanas. This group is at highest risk HIV/AIDS as they can have only receptive anal sex, if they wish to. Hijras who continue to wear male attire are termed khada-kothis. Generally hijras join an acquired family (gharana) after leaving their biological families, mostly due to societal pressures. Male temple prostitutes are called as jogta or jogappas; they are mostly male children dedicated to a goddess, who then ritually cross-dress for religious purposes. This group requires a variety of community-based strategies for intervention in addition to the usual strategies. Though hijras are cross-dressers, the hijra construct in India, better known in classical circles as tritika laingik, has four clear clinical subcategories hidden underneath the umbrella term of transgendered persons/cross-dressers. Most transgendered persons are not castrated. (i) Transvestites: This subcategory comprises biological males who cross-dress as a fetish. Their orientation is mostly heterosexual in that they prefer to have sex with women. HANDOUT 177

200 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) Transvestite Trans-sexual Hermaphrodites Drag queens/ satla kohi Fig. 4.2 Hijra/transgender construct (ii) (iii) (iv) Trans-sexuals: This subcategory comprises biological males who cross-dress because they feel they are/identify themselves as females. This gender-selfallocation can be so powerful that they will go in for castration and reconstructive surgery to become women. The sexual orientation of such persons is again heterosexual, as they would like to have sex with males as biological females. Hermaphrodites: The term comes from the names of the Greek gods Hermes and Aphrodites, male and female deities of love. Such humans may have primary sexual characteristics of both females and males, such as testes and vagina or a combination thereof. Such humans are rare. The sexual orientation of such persons is not known. Drag queens/satla satla kothis: This subcategory of hijras may be actually selfidentified homosexuals who become effeminate/put on effeminate mannerisms so as to attract males for receptive or insertive sex. The subgroups classified in the MSM circle are self-identified behaviourally homosexual men. Among them, are Indian identified kothis, allegedly effeminate men who may or may not be receptive partners in sex. They may be insertive partners with other men (dhoru-kothis) or also married effeminate men (pav-bata-wali-kothi). The male partners of kothis are named panthis or giriyas. These sexual identities are not inflexible. The subgroups on the left are subpopulations who are vulnerable due to their occupations/professions. Most often, individuals belonging to these groups are highly vulnerable as they practice survival sex because work is intermittent and irregular, and they may have to offer sex in exchange for work. Many subpopulations such as film extras, maalishwallah s (who mostly practice masturbation-related sexual gratification), masseurs, beer-parlour boys, gym-boys, room boys, truck cleaner boys, etc. are vulnerable to survival sex. It is important to recognize them to offer interventions through appropriate peer groups. However, not all the members who 178 HANDOUT

201 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) belong to these subpopulations should be considered as persons belonging to the category of MSM. It is necessary to be cautious to avoid stigmatization of all members belonging to these subpopulations. The bisexual groups may be divided into two: self-identified bisexual men and behaviourally bisexual men. The second category may be migrant labour, jail inmates, remand home inmates, and migrant persons in male quarters, hostels, orphanages, etc. Each situation demands fresh analysis of the MSM circle and new subgroups will emerge that necessitate extending coverage for STI/HIV prevention intervention. The first category of bisexual men are equally drawn to both sexes as a natural sexual orientation. RISK OF HIV/AIDS AMONG MSM It is important to remember that there is very high social stigma attached to sexual intercourse among persons belonging to the same biological sex. Males belonging to the MSM category are exposed to a higher risk of acquiring HIV infection compared to heterosexual men due to various reasons including higher risk of trauma during sex, presence of dendritic cells and also the high frequency of change of sexual partners. Generally, persons belonging to MSM groups may perceive a lack of options to maintain regular sexual relationships. The societal nonacceptance of MSM leads to enhancing their vulnerability to infections such as HIV by reducing access to subpopulation-specific STI/HIV prevention information, and access to quality care and support services. Most often, physicians do not reveal sensitivity and tend to be judgmental, thereby adversely affecting the acceptability of clinical services. Additionally, training of physicians to detect STIs among MSM is found to be lacking. These factors enhance the vulnerability of men belonging to the MSM category to STIs and HIV infection. The HIV prevalence rates among various categories of MSM are, not surprisingly, high. In some cities, the prevalence rate among male sex workers exceeds that among female sex workers. Most often, people do not recognize MSM as an important target population as they believe that their numbers are not sufficiently large. However, this may not be true. The first authentic report about the proportion of MSM was published in the famous Kinsey s report. About 4% of males were found to be gay and 11% bisexuals. Many large surveys on sexual orientation have been conducted after the publication of this report. The proportions reported in these studies are almost similar. Intensification of strategies related to prevention and control of STIs, including HIV infection, among MSM becomes all the more important due to the high proportion of men belonging to the bisexual category as their neglect may lead to continuing spread of these infections in the general population. HANDOUT 179

202 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) THEORIES OF SEXUAL ORIENTATION There are many theories about the development of sexual orientation. There is no definite evidence that homosexuality is genetically transmitted. However, some researchers believe that genes code for childhood temperaments, such as the level of activity, aggression, etc. predisposes the person to prefer social and sexual activities with persons of a particular gender to the other. Gender conformation tends to follow later during adolescence. This is also called the exotic becomes erotic (EBE) theory. Some researchers have reported its association with prenatal hormones and certain neuroanatomical features. However, the exact causal factors related to homosexuality are still unclear. Sexual orientation scales Kinsey developed the first scale in He classified individuals into seven categories. According to the scale, persons at scale 0 represent an exclusively heterosexual category whereas those at scale 6 are exclusively homosexuals. Persons at scale 3 represent bisexuals. Those who are at 4 are predominantly homosexuals but with more than incidental heterosexual and at 5 are predominantly homosexuals with incidental heterosexual orientation. Similarly those at 1 are predominantly heterosexuals and incidental homosexuals orientation and at 2 are predominantly heterosexuals with more than incidental homosexual orientation Exclusively heterosexual with no homosexual orientation 1 Predominantly heterosexual, only incidentally homosexual orientation 2 Predominantly heterosexual, but more than incidentally homosexual orientation 3 Equally heterosexual and homosexual 4 Predominantly homosexual, but more than incidentally heterosexual orientation 5 Predominantly homosexual, only incidentally heterosexual orientation 6 Exclusively homosexual Fig 4.3 Kinsey Scale: Sexual orientation (1948) However, there are certain limitations of this scale. Firstly, the scale is not dynamic. A person belonging to a particular category might be impacted by the environment at the time the scale is applied. However, the orientation may change, given that the environment changes in the future. Additionally, it might be difficult to apply such a scale among adolescents whose gender conformity may be prolonged. Realizing these issues, a new scale was developed by Klein the Klein Sexual Orientation Scale with seven reference points. 180 HANDOUT

203 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) Other sex only 2 Other sex mostly 3 Other sex somewhat more 4 Both sexes equally 5 Same sex somewhat more 6 Same sex mostly 7 Same sex only Fig Klein Sexual Orientation Scale (1990) This scale requires a clear definition of time points. It requires information about sexual behaviours in the recent past (past 12 months), in the past (more than 12 months ago) and the ideal based on preferences without constraints and future choices. Later, discussions are held with the client on all three reference time points with respect to seven categories on sexual attraction, sexual fantasies, emotional preference, social preference, lifestyle preference, and sexual identity. Keppel and Hamilton later added political identity as an additional category. This scale is a continuous scale. Type of sexual intercourse It is generally observed that a majority of the men belonging to the MSM category may practise peno-anal sex. However, this perception may not be correct. Mutual masturbation, oral sex and many other non-penetrative sex options are common. Additionally, it is also important to note that a person belonging to an MSM category may not only be a receptive sex partner but at times, may also be the insertive partner. SEXUALLY TRANSMITTED INFECTIONS It is important to recognize that STIs among MSM are likely to manifest at parts of the body that are involved in the sexual activity. Failure to recognize this may lead to a missed diagnosis. Most often, this failure occurs due to an inability to extract information about sexual orientation. It is important to remember that a judgemental attitude, insensitivity and lack of communication skills are major barriers in eliciting history about sexual orientation. Symptoms such as oral pharyngeal symptoms, and rectal pain and bleeding should not be missed in these settings in addition to the usual complaints of discharge, ulcers, etc. Physical examination for STIs among men must include examination of the pharynx, and the anal and peri-anal regions. If necessary, one should obtain pharyngeal or rectal swabs for culture to check for gonorrhoea or PCR. The management of STIs is not HANDOUT 181

204 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) influenced by sexual orientation except for oro-pharyngeal gonorrhoea that requires the use of ceftriaxone or ciprofloxacin. WHY VCT FOR MSM? It is important for the counsellor to know the broad areas of sexuality, specifically homosexuality or same-sex behaviour. There are various subgroups within the MSM sector, and an in-depth understanding of these subgroups is essential. Very often, clients who come in for an HIV test may not reveal their identity easily nor accept their same-sex behaviour. During such times, the communication skills, accepting attitude and sensitivity of the counsellor can be of great help. A counsellor should recognize the following factors while counselling MSM: Due to the hidden nature of MSM activity, such men do not disclose their sexuality and HIV-positive status to anyone. As a result, they do not have any support. Issues of sexual identity become more important than their HIV-positive status due to the secretive nature of homosexual subcultures. Societal pressures force self-identified homosexual men into matrimony. Living a gay identity and also maintaining a heterosexual married life is difficult for them. This adds to the stress. Many transgender MSM seek care from unqualified doctors or quacks due to the fear of rejection by qualified physicians and lose money on seeking ineffective treatment, delaying both clinical diagnosis and the start of correct treatment. Discrimination at the workplace due to the stigma associated with an HIVpositive status and MSM behaviour. The double stigma of being gay and HIV-positive is hard to deal with. As a result, they drop one of the identities. Sometimes when a new identity is applied, the previous identity disappears. The HIV-positive identity assumes importance. It is important to remember that counsellors attempting to influence and change the sexual orientation are likely to add to the conflict. Of the myths and misconceptions about HIV and AIDS, the false belief that HIV spreads only through heterosexual contact is important. Homosexual sex is regarded as mischief (masti) and not as sex. As a result, condom may be used during sex with their female partners but not with male partners. STIs are attributed to body heat (garmi) a concept perpetuated by the Indian Ayurvedic system of medicine and many MSM do not seek treatment. As these STIs are not completely treated, they enhance biological vulnerability to HIV infection. Protecting one s health is not necessarily a priority concern during survival sex for truck cleaner boys, beer parlour boys, etc. Interpersonal motivation such as finding companionship and intimacy are important. Societal homophobia discourages MSM from accessing most health services. 182 HANDOUT

205 Lack of role models for same sex relationships. Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) The counsellor must enable the client to voice his concerns and not to feel inhibited while talking about themselves or their sexuality. The role of a counsellor is important, as often, clients do not have anyone with whom they can talk. They may have faced rejection at home, discrimination at the workplace, ridicule or derision from friends, etc. In such instances, they turn to the counsellor to discuss their problems. Counselling for HIV infection therefore is not limited to HIV pre- and post-test counselling. For example, a client may not react negatively at all to an HIV-positive result but may be very uncomfortable about his sexuality. In such cases, it is important that counsellors deal with the issue that is troubling the client most. After clarifying the clients doubts regarding his sexuality, the counsellor may progress to telling them about their positive serostatus and its implications. As dealing with the double stigma of being both MSM and being HIV infected is difficult, it is best to develop prevention strategies. MSM are a vulnerable group and dealing with them about sensitive issues such as sexuality, STIs and HIV/ AIDS is difficult. Some may become defensive and disregard the care component. They may go into denial and self-hatred. This may reflect in excessive alcohol drinking, smoking and substance abuse, reduced compliance to treatment regime, and practising unsafe sex with multiple partners. However, quality counselling by a counsellor who is sensitive to their issues can help them in coping appropriately with the disease as well as their sexual identity. In India, NACO s MSM sentinel surveillance site in West India is showing a prevalence of 20% and above. This is very high and shows that HIV disproportionately affects MSM. Multiple sex partners, unprotected anal sex and the hidden nature of the sexual relations of MSM in many communities may all contribute to the prevalence of HIV among MSM. 1 Though data are now available on whether HIV is transmitted via heterosexual or homosexual intercourse, it is often assumed that sexual transmission is through heterosexual contact. If male clients are asked how they contracted HIV, they may be more likely to say via heterosexual rather than homosexual contact because of the fear of discrimination. CONSTRAINTS TO PROGRAMMES FOR MSM As well as denial that MSM exists, the following may hinder MSM programmes: Stigmatization or criminalization, leading to groups fearing visibility Difficulty in reaching out to particularly vulnerable groups of MSM, such as married MSM Inadequate or inappropriate access to health services Insensitivity to male male sex in contract tracing HANDOUT 183

206 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) Fear of being disclosed as an MSM to family or friends can drive men underground, leaving them without the skills to negotiate safer sex Barriers to VCT for MSM Health workers and counsellors may deny the existence of MSM or hold the belief that all MSM are transvestites or trans-sexual Embarrassment of counsellors in talking about sexual activities of MSM (or sexual activity generally) Lack of knowledge about the sexual practices of MSM Unfamiliarity with the informal or colloquial language used by MSM Counsellors are often unaware of the psychosocial issues affecting MSM Counsellors disapproval of MSM activity, including moral and religious objections Internalized homophobia of counsellors who may be insecure about their own sexuality Lack of IEC materials discussing HIV and MSM for counsellors to distribute to clients STRATEGIES TO ACCESS MSM MSM are not a homogeneous group. While some may socialize with MSM friends and identify with MSM communities, others may not have any such affinities. For all MSM, it is important to have appropriate or friendly HIV/AIDS or STI services where they can obtain accurate information about HIV (and STI) transmission and prevention. As many health services have traditionally not been welcoming of MSM, it may be important to sensitize health services so that they are MSM-friendly. Some of these adjustments may be subtle, such as including paintings or posters of attractive men/male filmstars on the walls of waiting rooms and in rooms where clients are interviewed. Other strategies include: Outreach programmes by volunteers or professional social or health workers to appropriate locations such as discos and shopping malls where MSM may congregate Advocacy for the abolition of laws that criminalize sexual activity between men Peer education among MSM training MSM to conduct peer education The promotion of high-quality condoms and water-based lubricants, and ensuring their continuing availability Education of staff from other health services to overcome ignorance and prejudice about MSM Anonymous telephone counselling and advice can be a first step for MSM wanting to be tested for HIV but hesitant about visiting a testing centre. The counsellor can provide advice and support over the phone as well as referral to an appropriate service 184 HANDOUT

207 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) Strategy for facilitating access to sexual health services for MSM The Humsafar Trust (HST), Mumbai, is a male sexual health NGO which has been working with MSM since 1995 to provide holistic health services. HST, a community-based organization of gay men, also works with MSM in the field of HIV/AIDS and STI prevention. HST has an extensive street outreach programme run by peer educators and outreach workers (ORWs) at railways stations, public toilets, public parks, beaches and other cruising areas where men go to meet other men for sex or socializing. ORWs distribute condoms and promote VCT services at HST s inhouse clinic. MSM afraid to come into the HST clinic are given health cards referring them to the nearest civic health facilities which are MSM-friendly. Information and behaviour change communication (BCC) material for recommended counselling services are handed out during the outreach. Friday workshops are organized wherein group activities encourages health-seeking behaviour and strengthen peer linkages to boost safe sex practices. HST has the only voluntary counselling and training centre (VCTC) specially for MSM housed within an NGO s premises in Mumbai. Over 5000 men have accessed both testing and treatment at this VCTC since its inception in July Treatment of both OIs and STIs along with dietary advice and stressing behaviour change using yoga, meditation and de-stressing exercises are part of the service delivery. HST is linked to the tertiary LTMG (Sion) Hospital in north central Mumbai, the KEM Hospital in central Mumbai, the Cooper Hospital in northwest Mumbai and the Bellasis Road civic STI clinic near the red-light area in south Mumbai. These linkages with public health facilities are also strengthened by access to sensitized primary medical practitioners. A helpline, Humsafar Ki Awaz (the voice of the kind companion) takes calls from people wishing to access Humsafar s services. There is a library/drop-in centre for gay men/msm seeking safe space, a small counselling room, and a pantry for cold and hot drinks. HST is a full-fledged community centre for sexual minorities. Provision of specially developed IEC materials with information on safe sex for MSM Some MSM may be easily accessible, especially in cultures where there are visible MSM communities. For example, in Mumbai and Chennai, MSM are networked through peers and brought into STI clinics by NGO volunteers/paid outreach workers (ORWs). Access to health facilities is through reference cards or through health facilitators in municipal hospital OPDs who put MSM clients at ease. Some MSM may be reached through female partners attending antenatal clinics. For this reason, it can be beneficial if women are encouraged to bring their partners to the VCT service. HANDOUT 185

208 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) VCT SERVICES FOR MSM In the first instance, services providing VCT need to acknowledge the existence of MSM activity and develop appropriate protocols. These protocols should be compatible with other aspects of best practice in VCT. In addition, VCT for MSM should: Acknowledge the variety of sexual behaviours among MSM and the complexity of relationships with both casual and permanent partners (especially when there are both male and female partners). Conduct a sexual risk assessment for HIV and STIs with an appropriate checklist including all possible sexual behaviours. Develop with the client a strategy for disclosing the HIV status to both male and female partners. Address the issue of possible organic sexual dysfunction (erectile dysfunction and retarded ejaculation), which may arise from issues of identity and/or the client being HIV-positive and to implication for transmission risk reduction. This may impact the ability to engage in safe sex. Address issues related to coming out (disclosing their sexual preferences) as an MSM to family or friends (this may or may not be an issue; can depend on the culture, individual, family, etc.). Promote use of condoms for anal and vaginal sex, and eroticize safe sex. Promote other non-penetrative forms of sex for occasions when condoms are not available or as an alternative to penetrative sex such as oral and interfemoral sex. Explain and provide supporting information on how HIV is transmitted with specific reference to risk factors for MSM, and anal intercourse in particular. Features of an MSM-friendly service Is anonymous Assures confidentiality Has staff who do not make value judgements about behaviours (this means all staff, including those in the reception to nurses, counsellors and doctors), Provides appropriate education materials in client waiting areas as well as in counselling and doctors rooms Has equipment such as proctoscopes etc. for oral and anal examination of MSM Is open at appropriate times, such as late at night on at least some nights and on weekends Is located in an accessible area, for example, near venues or locations where MSM may go to meet each other or to look for sex Provides free or low-cost HIV and STI testing Provides free or low-cost condoms and water-based lubricants 186 HANDOUT

209 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) Providing HIV/AIDS services for MSM in Chennai The Society Welfare Association for Men (SWAM) was started in Chennai to provide a supportive environment for gay/kothis and bisexual men. Its establishment coincided with the emergence of HIV/AIDS and its founder trustee is India s first out positive gay man. SWAM has developed a range of HIV/AIDS community activities supported by international donors. These initiatives include a drop-in centre and MSM outreach by peer educators at cruising sites such as beaches and parks where men go to meet other men for sex. Outreach workers promote SWAM s services by handing out cards with its address and health services on offer, such as free medical examinations and treatment for STIs. Volunteers receive training from other health workers and staff the counselling service. SWAM is openly known as a gay/kothi organization in Chennai and much of the publicity is through sexual networks in Chennai. Encouraged by the Tamil Nadu State AIDS Control Societies (SACS) and international donors funders such as USAID/FHI, SWAM has focused attention on HIV prevention and established its credibility with the public. HANDOUT 187

210 Module 4 Submodule 4 Targeted VCT intervention: Men who have sex with men (MSM) 188 HANDOUT

211 Module 4 Module 4 Submodule 5 Targeted VCT intervention: Mobile populations Handout Submodule 5: Targeted VCT intervention: Mobile populations Session objectives At the end of the session, trainees will be able to: Demonstrate an understanding of HIV/AIDS issues affecting mobile populations Demonstrate an understanding of the relationship between HIV/AIDS and migration Identify HIV/AIDS prevention and support strategies for mobile populations INTRODUCTION Mobile populations are at higher risk than the overall population for poor health in general and HIV in particular. Migration is an ongoing phenomenon. It can be either intercountry migration or seasonal migration within the country. Definition of mobile population Persons who travel, migrate and stay for short periods or settle down in another city (from any place where previously residing in) are defined as a mobile population. Persons who commute for work do not fall under this category. Migration and mobility have increased over the past several years and are likely to continue to increase as due to the following reasons: Economic imbalance between communities pushes people to move to other areas in search of a better life or to survive, e.g. demand for labourers in urban areas pulls seasonal migrants during peak seasons such as the fruit/sugarcane harvesting season. Riots, famine and earthquakes continue to displace people. During these catastrophes, people are forced to migrate. Land and air transport have become more readily available. Organized migration and trafficking continue to flourish. AIDS and migration are two of the crucial social issues facing today s changing world. Traditionally, migration has been viewed as a rational and informed choice made by individuals seeking improved living conditions. However, as one study observes (UNDP, 2001): The suggestion that movement represents an entirely rational course of action that is taken in response to a reasoned and well informed judgement about HANDOUT 189

212 Module 4 Submodule 5 Targeted VCT intervention: Mobile populations conditions elsewhere is questionable. Very often people move more in obscure hope than definite expectation of finding a better life elsewhere. Some simply end up moving from one environment of poverty and exploitation to another. There are several different categories of migrants. These include: Those who choose to migrate to another country to seek a better quality of life. Those who are forced to migrate to escape disruption and turmoil in their home country (refugees). This category includes migrants from riots, earthquake or political turmoil. Those who migrate from one state to another. Migrants and mobile populations may have limited or unreliable information on the country or province they are relocating to. They may also have inaccurate information on the actual migration process. For example, if the process is organized by a commercial agent, that agent may exaggerate the speed and ease of the process, and the migrant may be unprepared for the stresses involved. VULNERABILITY TO HIV/INFECTION Assessing the vulnerability to HIV/AIDS The economic situation of migrants gives them limited choice of appropriate employment and therefore they may be locked into unfair employment contracts arranged in the country of origin. They are often vulnerable to exploitation, including sexual exploitation. To provide migrant populations with services to prevent HIV infection and for the care of those living with HIV/AIDS requires innovative and culturally sensitive approaches and confidentiality. Women and girls face particular migration issues. Their employment opportunities may be restricted and their ability to negotiate improved working conditions limited. The trafficking of women for sex and bonded sex work clearly has implications for vulnerability to HIV infection. Factors affecting the vulnerability status of mobile populations Understanding the poverty and economic transitions, often associated with migration and mobility, helps us to understand why migrant populations are at a higher risk than the overall population for poor health in general and HIV infection in particular. Factors contributing to vulnerability to HIV infection are: Limited or no access to health services; Low levels of literacy; Health services that are culturally inappropriate and insensitive to migrants needs; Limited exposure to public health campaigns focusing on HIV/AIDS; Lack of communication skills in the local language; 190 HANDOUT

213 Module 4 Submodule 5 Targeted VCT intervention: Mobile populations Myths and misconceptions regarding modes of HIV/STI transmission; and Economic transitions associated with migration. Mobility and migration are not in themselves risk factors for HIV transmission but can create conditions in which people are more vulnerable (UNDP, 2001). 1. As mobile population are away from their family for a long period of time, their need for affiliation drives them to other partners who could be commercial or non-commercial partners. Low personal risk perception leads to unsafe sexual practices. 2. Job pressures and insecurities lead to tensions. Substance abuse and alcohol consumption, viewed as means of relaxation, lead to loss of social and sexual inhibitions. This, in turn, promotes unsafe sexual behaviour. 3. Myths and misconceptions regarding safe/unsafe sexual practices and modes of transmission. 4. Low awareness of symptoms of STIs and their linkages with an increased risk of contracting HIV infections. 5. Low social support for the use of preventive products and services. In many instances, the spouses themselves are suspicious about condom usage, thereby discouraging its use. PROGRAMMATIC RESPONSES The following questions can help assess the vulnerability of migrants and mobile populations to HIV infection. They may be useful questions to ask when developing programmatic responses. Choice: Assess whether migrants are victims of riots or political repression or have come of their own will. Cultural affinity: Are there cultural differences between the individual s state and the place they are migrating to. Intention: Do migrants intend to stay in the host country? Length of stay: Migrants may stay from short periods of time through to several generations. Each type of stay requires a different approach. How long are they planning to stay and their arrangements for the stay. Needs of the host country/state: Some countries/states welcome migrants and see them as an integral part of their nation-building process. Others see them as merely providing a short-term service or alternatively as taking work away from the country s citizens. The needs of departing migrants and those already present in the host country HANDOUT 191

214 Module 4 Submodule 5 Targeted VCT intervention: Mobile populations require a range of programmatic responses, including access to VCT. Counselling can be seen as one component in the continuum of care which, ideally, is available to migrants. Counsellors providing VCT services and other support for migrants and mobile populations need to be able to link with other services, and to understand the broader programme and infrastructure issues affecting these groups. An effective response to the needs of migrants will be one that is inclusive and operates at a range of levels: Legislation and policy development to ensure protection of human rights; Advocacy and social marketing; Community educators and outreach workers; Counselling inclusive of VCT, rapid tests; Referral networks, linkages between NGOs (both inter- and intrastate); Appropriate treatment of STI/OIs; and Integrated treatment and prevention services. Building partnerships with other organizations is important in both government and non-government sectors. With limited resources, it is necessary to ensure that services are linked with other service providers and that policies are compatible across the services. For example, a clinic providing general health/sti services can Best practice Vulnerability to HIV infection and migration in India The key factor is the behaviour of some mobile groups that places them at a higher risk of infection. This relates to mobility being selective of young adults, especially men, and often involving separation from partners and release from traditional constraints on behaviour, especially sexual behaviour. The growth of a commercial sex industry in locations where there are concentrations of these movers adds to the higher levels of vulnerability of these locations. Accordingly, it is possible to identify hot spots where there are concentrations of migrant workers and an associated commercial sex industry; often there is a greater risk of infection and prevalence rates above the national average in these areas. Such hot spots can include transit areas, workplaces employing large numbers of migrant workers, ports and harbours, cities and towns, mining, the lumber industry, plantation and construction sites, especially those in remote areas, transport routes and stops, and border-crossing points. There is clearly a pattern in many cases of mobile people being more likely to engage in high-risk behaviour (HRB), especially sex with a CSW, than is the case with less mobile groups. The relationship between mobile groups and the commercial sex industry is crucial. For example, the presence of red-light districts (turbe naka) 15 m from Vashi market in Navi Mumbai has implications for migrants to frequent that red light district area. Source: Population mobility and HIV/AIDS in India 192 HANDOUT

215 Module 4 Submodule 5 Targeted VCT intervention: Mobile populations incorporate VCT services. This will enable us to maintain the anonymity and confidentiality of the client. If you are working with illegal immigrants, it is important that other organizations you may refer your client to have a good track record in working with this kind of a client group. This is even more important if the client is HIV-positive. INTERVENTIONS AT VARIOUS STAGES OF MIGRATION As migration can be a fluid process of mobility, to be effective, HIV/AIDS responses must address the particular needs and vulnerabilities of mobile people at each stage of the mobility process and in a variety of geographical locations. Intervention strategies can focus on the following stages of migration: Pre-departure Migration Adaptation Settled period Remigration Pre-departure: Interventions before the migrant leaves his native place At the community level, there is a need to create awareness of the entire migration process and the risks involved (STIs and HIV). Local NGOs can play an active role here. Pre-departure programmes can include providing information on reproductive health, HIV/AIDS, information on airport and border procedures, government and non-government services for migrants in receiving countries and cultural briefing. VCT should be offered along with appropriate support. Migration The process of migration may be brief or extended. During this process, there may be a strong risk of sexual exploitation of women, girls and boys. Those recruited for sex work may frequently be moved from one area to another to work in different communities. Detention centres for those detained during migration may have poor infection control facilities and lack access to HIV prevention tools. It may be necessary to develop programmes with a variety of organizations and agents to gain access to migrants and provide education services to them. Adaptation in the place an individual has migrated to Migrants are especially vulnerable during this early period. This is a period when migrants may be least visible and have the lowest level of access to health and welfare services. Outreach education, peer education programmes and drop-in centres for migrants can all be used to build individual and community capacity among migrants, but other innovative and labour-intensive interventions may also HANDOUT 193

216 Module 4 Submodule 5 Targeted VCT intervention: Mobile populations be required. For example, boys working in small hotels or truck helpers may be forced into behaviours that are unsafe and with which they are unfamiliar. Their employers or managers may insist on not using condoms. Outreach programmes need to build strong links with such managers and local NGOs. Settled period UNAIDS recommends special programmes for migrants based on observations that migrant groups tend to have sexual partners and form liaisons within their own group. Therefore, the greater risk can be internal as well as external (UNAIDS, UNESCO 2000). However, the vulnerability of the migrant can vary greatly during this period and the breaking down of traditional norms may result in changes in behaviour and increased risk levels. Again, interventions need to reflect the changing needs of the target group. Remigration Remigration, when the migrant returns to his native place, may also be a period of increased vulnerability. Individuals have gone through personal and cultural changes, and these changes may put them at odds or variance with their home community. This may be especially so if they are rejected by the home community, which may be the case if they are perceived to be HIV-positive. If returning migrants are HIV-positive, they will also have to face issues of disclosure to partners and family as well as other issues. Issues such as infection of spouses and re-infection have to be dealt with. Services need to be non-judgemental and confidential. Broader education of the community may be necessary to increase local knowledge of HIV transmission, and ways to provide care and support for people with HIV/ AIDS. ISSUES IN SERVICE PROVISION FOR MIGRANTS AND MOBILE POPULATIONS An important issue is facilitating access to health services in the migrant s language. Clinical issues and relationship to HIV transmission Poor self-esteem and lack of motivation to protect self and others Post-traumatic stress disorder (PTSD), depression and adjustment disorder Drug and alcohol use, and related transmission risk behaviour Police harrassment and problem of survival in the local environment. Key counselling interventions Assessment of information on HIV/AIDS Risk perception by the client Options for reducing the risk of transmission 194 HANDOUT

217 Module 4 Submodule 5 Targeted VCT intervention: Mobile populations Mental preparedness of clients to test and how will they deal with the report A realistic risk-reduction plan tailored to the client s needs Demonstration of condom use Management of drug and alcohol use, and harm reduction strategies (safer mechanisms for dealing with adjustment issues and stresses) Role-play and planning for disclosure of risk and/or HIV status Family therapy and couple counselling Explore support systems friends, family, employees Referral to support agencies, NGOs for services such as positive support groups, centres for further testing, nutritional guidance and other supports required Regular follow-up is crucial to ensure that the client is following the riskreduction plan and for further supports Distribution of IEC materials in the local languages. The registration forms, consent forms, etc. must be in local languages for ease in understanding by the client Potential barriers Language and cultural differences Prior traumatic experience fear, prejudice and stigmatization Gender issues Lack of services for migrant labourers Low self-esteem MANDATORY TESTING AND HUMAN RIGHTS Research carried out by Coordination of Action Research on AIDS and Mobility (CARAM), Asia shows that most migrant workers do not even know that they are tested for HIV infection when they intend to emigrate. Counselling of those taking the test is never done and migrant workers are only rarely told about the results. Such practices show very clearly that the tests are used by receiving countries to be able to exclude certain people from migrating and are not for the benefit of the individuals tested. It is time to discuss, at the government level, if such practices are acceptable. Migrant workers are also frequently tested while staying in the receiving country, for example, when they have to extend their work permit. In Malaysia and the Gulf states, a positive test result provides a reason for policy-makers to send migrant workers back home to their countries. Here again we are confronted with the use of HIV tests for authorities, but not for the protection of individuals. Mandatory testing for HIV is not recommended by UNAIDS or WHO. However, if mandatory testing is being carried out on potential or arriving migrants, this increases the importance of developing appropriate interventions that can lessen the impact of this testing and prepare migrants for such an action should it occur. HANDOUT 195

218 Module 4 Submodule 5 Targeted VCT intervention: Mobile populations A study of former migrant workers in the Philippines found that testing positive for HIV is likely to render workers unfit for work abroad permanently. If they are found to be HIV-positive overseas, they are usually deported immediately, and the psychological and emotional impact is manifested in the form of depression and mental anguish. (Loudes and Maria: 6 th International Congress on AIDS in Asia and the Pacific.) FOLLOW-UP WITH MIGRANT WORKERS The HIV/AIDS Counselling and Sexual Education Programme established a followup mechanism so that BCC can be extended even after the workers leave for their destinations. Establishing referrals and linkages This is an essential part of HIV counselling. Counsellors need to understand the needs of clients and make appropriate referrals to other health-care providers, and care and support organizations. An assessment of organizations needs to be conducted before making referrals, and this referral system needs to be sustained. 196 HANDOUT

219 Module 4 Module 4 Submodule 6 Targeted VCT intervention: Prisoners Handout Submodule 6: Targeted VCT intervention: Prisoners Session objectives At the end of the session, trainees will be able to: Demonstrate an understanding of the issues affecting the management of HIV/AIDS among prisoners Identify HIV/AIDS prevention and support strategies for prisoners INTRODUCTION Prisons and detention centres are some of the most difficult sites to carry out effective HIV/AIDS prevention interventions, and to provide appropriate care and treatment for people with HIV/AIDS. Worldwide, most societies give low priority to public health issues in prisons. This is unfortunate as prisons can be very efficient sites for the transmission of blood-borne or sexually transmitted viruses such as HIV. If prisoners or detainees become infected with HIV during incarceration, this only increases the potential for the spread of HIV in the broader community as most prisoners are likely to serve relatively short-term sentences and then return to the community. Despite high levels of security and physical removal from everyday life, prisons are not vacuums. The same behaviours that might put people at risk in the outside world, such as unprotected sexual intercourse and IDU, also occur in prisons. However, the conditions under which these behaviours take place in prisons may place inmates at a greater risk than if carried out in the outside world. Little research has been carried out on the risk behaviours of prisoners in Asia. PRISONERS AND MENTAL HEALTH In a review of psychiatric surveys of general prison populations in western countries (Fazel and Dansh, 2002), it was found that of prisoners, 3.7% of male inmates had psychotic illnesses, 10% had a mental disorder and 65% had a personality disorder, including 47% with antisocial personality disorder. Among women, 4% had psychotic illnesses, 12% had mental disorders and 42% had a personality disorder, including 21% with antisocial personality disorder. Prisoners were several times more likely to have psychosis and a mental disorder, and about 10 times more likely to have antisocial personality disorder than the general population. In Thailand, a study (Graipaspong, 2002) of 230 female and 758 male inmates in Bangkok Metropolitan and Bangkwang Central prisons found the following prevalence of psychiatric disorders current psychosis: 3.4%; major depression: 10%; HANDOUT 197

220 Module 4 Submodule 6 Targeted VCT intervention: Prisoners current manic episode: 1.4%; generalized anxiety disorder: 6.6%; and dysthymia: 4.3%. Dependence on amphetamines among inmates was as high as 26.2% and alcohol dependence 12.2%. RATES OF HIV INFECTION AMONG PRISONERS The rates of HIV infection among prisoners may or may not reflect what is happening in the rest of the community. HIV infection among prisoners in the US In the United States, where the AIDS epidemic has a long history compared with some Asian countries, the rate of AIDS in state and federal prisons is five times higher than that in the general US population. There are no accurate figures on the prevalence of HIV infection since not all individuals who are arrested need to declare their HIV status. However, the number of HIV-positive cases in correctional institutions is rising at a rate faster than in the general US population. HIV infection among prisoners in Thailand In Thailand, the rates of HIV infection are also higher in prisons than in the general population. A study conducted in the large Klongprem Central Prison in Bangkok indicated a 10% HIV infection rate among inmates (Lerwitworapong, 1999). In 1997, among hospitalized inmates, 41% were infected with HIV, with tuberculosis (TB) being the most common OI. HIV infection among prisoners in India In a study from India, 240 male and 9 female jail inmates confined for various crimes in a district jail near Delhi were screened for sexually transmitted and bloodborne diseases, including HIV, syphilis, hepatitis B and C viral infections, skin diseases, etc. (Singh, Prasal, Mohanty, 1999). The inmates were in the age group of years. One hundred and seventy-four of them were not aware of AIDS. On examination, 28 of the 240 males (11.6%) had active hepatitis with or without a history of jaundice in the past two years, 25 (10.4%) had active pulmonary TB and 11 (4.6%) had syphilitic ulcers on the penis. Three males (1.3%) were found to be Western blot-confirmed HIV-1 positive while 28 male (11.1%) and two female inmates (22.2%) were positive for HBsAg. Out of the three HIV-positive males, one was an intravenous drug user (IVDU), the second was a drug addict and a frequent visitor to CSWs, while the third had contracted HIV through homosexual contact. Although the prevalence of HIV infections was low, the study suggested that existing conditions in the prison promoted the spread of HIV among inmates. HIV TRANSMISSION IN PRISONS AND DETENTION CENTRES 198 HANDOUT

221 Module 4 Submodule 6 Targeted VCT intervention: Prisoners Prisoners or detainees may already be practising HRBs or be vulnerable to HIV infection before detention. Sex workers, IDUs, migrants/refugees and MSM may be more vulnerable to HIV infection than other groups (depending on the context), and also more vulnerable to detention or arrest. Poor infection control and blood safety in the health sector also contribute. For example, IDUs are often overrepresented in prison due to the use of an illegal substance and there is also a relationship between the use of illegal drugs and drug-related theft. Transmission of HIV may occur through the following routes: Sharing of injecting equipment Sexual transmission through the following ways: Inmate to inmate (consenting); Inmate to custodial staff (consenting/coercive); and Inmate to inmate (sexual assault). Tattooing blood brother or group rituals with blunt instruments Poor infection control in custodial medical settings Sharing of injecting equipment A recent study in Thailand found that HIV infection was associated with risky injecting behaviour both in the prison and after leaving it, such as injection of methamphetamine before detention, sharing of needles while in holding cells and borrowing needles in the period directly after release from the prison (Aumpohr-N Pun 2003). An earlier Thai study with a cohort of 1209 IDUs concluded that drug use while being incarcerated is a strong risk for HIV infection in Bangkok IDUs (Rakthkan et al. 2000). A study in Nepal, indicated that 28% of 95 inmates who agreed to give in-depth interviews were IDUs and 75% of them always shared needles. Sexual transmission Numerous studies as well as anecdotal information confirm that sexual activity exists in prisons between inmates, and between inmates and custodial staff in prisons. One study (UNAIDS, 1997) reports that 73% of inmates in Brazil admitted to engaging in male-to-male sexual activity while in prison. Another study reports levels of sexual activity of between 6% and 12% in Australian and Canadian prisons. A recent study (Okochi et al ) from Agodi prison in Ibadan, Nigeria, reports that 71% of younger inmates and 29% of older inmates had male-to-male sex while in prison. Only 7.8% reported using condoms although 96% knew HIV was transmitted through sex. Prison authorities in many countries are reluctant to discuss or acknowledge the relatively high levels of sexual activity in prison. Research projects on HIV and prisoners are also often reluctant to ask questions about the sexual practices of prisoners while in custody and only collect information HANDOUT 199

222 Module 4 Submodule 6 Targeted VCT intervention: Prisoners on pre- or post-prison activity. Tattooing and other blood-to-blood practices Unsupervised tattooing is likely to occur in prisons. The lack of access to sterilized equipment can mean that tattooing or blood brother rituals lead to the transmission of HIV (and other blood-borne viruses). Poor infection control practices in custodial medical facilities may be seen. In addition, medical facilities within prisons and detention centres may be understaffed and poorly resourced. As a result, there may be an increased risk of transmission of HIV and other blood-borne viruses. KEY STRATEGIES FOR HIV/AIDS CARE AND PREVENTION The WHO guidelines on HIV infection and AIDS in prisons (UNAIDS 1999) provide a comprehensive set of strategies for testing, prevention and care in prisons. The guidelines reflect human rights concerns as well as an understanding of behaviour change principles, and prevention and care interventions that have been successfully utilized elsewhere. However, although these guidelines reflect best practices, it is only realistic to acknowledge that they are not universally applied and, in some cases, not applied at all. We now discuss some key strategies drawn from the WHO guidelines that could be applied to improve care and decrease transmission in prisons. VCT services offered at entry and pre-release Compulsory testing of prisoners for HIV is unethical and ineffective, and should be prohibited. Ideally, prisoners should be voluntarily tested for HIV. They should give informed consent. However, informed consent in prisons is very rare and many prison officials consider that the very nature of incarceration takes away the right of a prisoner or detainee to take their own decisions about HIV testing. The counsellor needs to review the existing policy and practice within the facility with regard to HIV testing, and work with the facility s management to develop a testing policy that incorporates as many best practice features as possible. If HIV testing is not voluntary, it is still important to introduce pre- and post-test counselling to accompany the testing process. If testing is not carried out at all, then the option of providing pre-release VCT may be an appropriate strategy. Issues of confidentiality a contentious issue in prisons should be kept in mind. One should consider whether confidentiality can be assured if outgoing prisoners are found to be HIV-positive. Peer education programmes The principle of peer education is that the effectiveness of educational interventions may be increased, especially for some groups, when peer educators are used to deliver education. Prisoners usually have a high degree of mistrust of authority and are therefore likely to distrust information delivered by the prison staff. Peer 200 HANDOUT

223 Module 4 Submodule 6 Targeted VCT intervention: Prisoners education programmes for prisoners have been shown to be effective in conveying accurate information on HIV/AIDS, increasing knowledge and encouraging behaviour change. However, such programmes can pose a threat to the authority of the custodial staff because they are expected to empower prisoners. It is extremely important to establish a good working relationship with all levels of prison management but particularly with the custodial staff as they may ultimately be responsible for whether or not peer education programmes can be conducted. Well-living programmes for prisoners Prisoners or detainees need to be able to access information on healthy living as well as resources to maintain the quality of life. This can include providing information and advice on healthy eating, quit smoking programmes, the impact of illegal drugs and other medications, primary health care, support groups, detoxification programmes, exercise programmes, education opportunities and other options that support prisoners well-being. Access to condoms Prison authorities often fear that by providing condoms for prisoners they are acknowledging that sex takes place in prisons, and they are seen to be promoting sex between prisoners or between prisoners and guards. Condoms have been available in Canadian prisons since 1992 and in a 1998 report of a survey of the prison systems of 20 European countries, the authors report that condom availability has become widely accepted (La Porte et al. XII world AIDS Conference). There is no evidence to suggest that the availability of condoms increases the level of sexual activity. Condoms should be kept in a discrete, accessible place. Injecting drug use Because of the relationship between crime and both legal and illegal drug use, many prisoners may have drug-related problems. These can include addiction to drugs such as heroin, amphetamines and alcohol, and physical or mental problems as a result of drug use. Strategies to respond to drug-related problems could include demand reduction (methadone, treatment for mood disorders, motivational interviewing) and harm reduction (cleaning equipment, information on safe injecting, clean injecting equipment). Provision of injecting equipment Sterile needles and syringes are distributed to prison inmates in several European prisons with no reports of increased drug use. It is unlikely that countries where there are no pre-existing needle and syringe exchange programmes will endorse the distribution of clean equipment in prisons, even if it is likely to reduce the transmission of HIV and other blood-borne viruses such as hepatitis C. However, HANDOUT 201

224 Module 4 Submodule 6 Targeted VCT intervention: Prisoners this should not stop health-care workers and their agencies from lobbying for such initiatives. There are now good data available to indicate the effectiveness of providing new injecting equipment in reducing the spread of HIV through injecting. Distribution of full-strength bleach using education on safe use Prison authorities who do not condone the distribution of new injecting equipment to inmates may feel more comfortable with making bleach available for disinfecting injecting equipment. Although the cleaning of injecting equipment is not 100% effective in killing HIV in needles and syringes, cleaning is nevertheless a viable and practical option to reduce the levels of risk through sharing. Cleaning interventions need to be accompanied by accessible and appropriate information on safe injecting. IEC materials produced for prisoners need to take into account the low literacy levels among them. It should be noted that although possession of drugs is illegal, a single syringe found in a prisoner is not treated as grounds for disciplinary action or for urine analysis. Health management in prisons All prisoners have the right to receive health care, including preventive measures equivalent to those available in the community without discrimination, in particular with respect to their legal status or nationality. One strategy that may be effective in improving the management of HIV/AIDS in prisons is to bring health systems in prisons under the control of government health authorities. Medical services available in prisons are often of variable standard and exempt from health department guidelines and policies. Issues of importance in this area are: Ownership of medical records Increase in access to post-release care Increase in the utilization of VCT services Decrease in punitive action related to risk-taking behaviour, and Decrease in stigmatization. Provision of VCT services in prisons The following interventions can be carried out in prisons: HIV pre- and post-test counselling Training and supervising peer educators Education and training of custodial staff in HIV prevention (but not to conduct VCT, see below) Suicide risk reduction and psychological referral 202 HANDOUT

225 Module 4 Submodule 6 Targeted VCT intervention: Prisoners VCT for the management of occupational exposure Pre-release counselling for risk reduction, partner disclosure and treatment referral Demonstration of the use of condoms and safe injecting practices Consider the following while planning VCT interventions in prisons: Invite counsellors or other trained personnel from external organizations. Corrective services personnel, especially those working within the prison, are not appropriate for providing VCT for those in detention. Facilities for rapid testing should be available. Counsellors need to build partnerships with key stakeholders before initiating activities. Without the support of prison staff and the management, interventions are likely to be shortlived and cannot be sustained. Conduct risk assessment for HIV and STIs using an appropriate checklist, including all possible sexual behaviours and possible nonsexual exposure such as sharing injecting equipment. Provide the client with appropriate IEC materials describing routes of HIV transmission and prevention techniques. The counsellor should go through the material with the client. Telephone the counselling service may be appropriate if detainees are allowed to make outside calls. HANDOUT 203

226 Module 4 Submodule 6 Targeted VCT intervention: Prisoners 204 HANDOUT

227 Module 5 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects Handout Submodule 1: Antiretroviral therapy: Counselling and medical aspects Session objectives To understand the process of viral replication and the action of ARVs To understand the various categories of ARVs, their effects and side-effects To explain the relationship between virological efficacy and adherence to potent combination antiretroviral regimens To identify factors that can affect adherence to antiretroviral regimens To describe the strategies and proactive measures that counsellors and other care providers can adopt to improve or facilitate antiretroviral adherence INTRODUCTION The development of antiretroviral therapy (ART) marks a turning point in the management of the HIV/AIDS epidemic. The use of these medications has dramatically reduced HIV-associated morbidity and mortality. Very high levels of adherence are a prerequisite for a successful immunological response. Low adherence increases the risk of treatment failure and disease progression. A more significant consideration is the fact that low adherence is likely to lead to further transmission of resistant viruses. This is a strong indicator of a highly negative impact on the cost-effectiveness of HIV management. LIFE-CYCLE OF HIV AND ACTION POINTS FOR ANTIRETROVIRAL AGENTS Understanding the life-cycle of HIV, as it infects the human system, helps in comprehending the action of ART on the body. As the virus enters the bloodstream, the virus is attracted by the lymphocytes, which mature in the thymus and bear the CD4 molecule on their surface. The virus binds to the CD4 receptor via its outer glycoprotein Gp120 cover and enters the cellular cytoplasm, where it uncoats and sheds its envelope. Viral RNA and the unique enzyme reverse transcriptase become active and facilitate the conversion of viral RNA into DNA known as proviral DNA. The proviral DNA then replicates (creates a mirror image of itself) and, with the help of the enzyme integrase, integrates with the host genome and becomes a part of the host cell. Once the DNA enters the nucleus of the infected cell, it goes on multiplying and producing messenger RNA (mrna) HANDOUT 205

228 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects along with the multiplication of the nucleus of the host cell. This mrna directs the machinery to produce new viral particles, which develop into new virons with the help of an enzyme called protease. These virons then bud off from the cell and affect other cells with CD4 receptors. Thus, one infected cell turns into a factory churning out billions copies of the human immunodeficiency virus (HIV). STRUCTURE OF HIV Central core of viral RNA Surrounded by a viral capsid Envelop is the outermost membrane Envelop is studded with two envelop proteins (antigens) Gp41 and Gp120, which are important in pathogenicity. Core protein antigen is called p24, which is detectable early in the infection. Based on the life-cycle, the possible targets for ART are: Blocks binding of HIV to the target cell Blocks the cleavage of viral RNA Inhibits the reverse transcriptase Blocks the enzyme integrase Prevents the production of viral protein Blocks the enzyme protease Inhibits viral budding Antiretroviral drugs (ARVs) act on various stages of the life-cycle of HIV on the human body. These drugs act by interrupting the process of replication of the virus Envelop Capsid Envelop proteins Central core Viral RNA 206 HANDOUT

229 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects and hence reduce the destruction of CD4 cells. These drugs are therefore instrumental in delaying disease progression. ARVs have improved and lengthened the lives of thousands of patients fighting the disease. Classification of antiretroviral drugs All patients on ART may not experience lasting benefits. There are several reasons for treatment failure, including an individual characteristics such as gastrointestinal conditions that interfere with response to medications, dosing errors by physicians, existing resistance to a medication or inability to adhere to the treatment regimen. Table 5.1 Classification of antiretroviral drugs Nucleoside reverse Non-nucleoside reverse Protease inhibitors (PIs) 3000 transcriptase inhibitors (NRTIs) transcriptase inhibitors (NNRTIs) Zidovudine 750 Nevirapine 800 Saquinavir Lamivudine Delavirdine Ritonavir 3500 Stavudine Efavirenz 2180 Indinavir Didanosine 1200 Amprenavir Zalcitabine (ddc) Lopinavir Abacavir 5000 Nelfinavir What is resistance? HIV is resistant to a drug if it keeps multiplying rapidly while the patient is on ART. Changes (mutations) in the virus cause resistance. HIV mutates almost every time a new copy is made. Not every mutation causes resistance. Antiviral drugs control most types of the virus. However, they will not control resistant virus. It can escape from the drug. If the client keeps taking the drug, the resistant virus will multiply the fastest. The best way to prevent resistance is to control HIV by taking strong antiviral medications. However, if the patient misses doses of medication, HIV will multiply more easily. More mutations will occur; some of them could cause resistance. Types of resistance There are three types of resistance: Clinical resistance: HIV multiplies rapidly in the body even though the patient is taking antiviral drugs Phenotypic resistance: HIV multiplies in a test tube when antiviral drugs are added Genotypic resistance: The genetic code of HIV has mutations that are linked to drug resistance HANDOUT 207

230 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects Viral resistance When patients take their medications irregularly, or when providers prescribe inappropriate doses or combination of medication, the virus is exposed to inadequate (subinhibitory) concentrations of ARVs. This leads to ongoing viral replication and to the development of resistance to ARVs. Resistance to antiretroviral medication is a major cause of treatment failures. The critical problem is the issue of cross-resistance cross-resistance. Once the virus becomes resistant to a particular antiretroviral medication, the virus may also exhibit resistance to other medications of the same class that have not yet been prescribed to that patient. This limits the choice of drugs available to replace the failing regimen. For example, resistance to nevirapine would mean that the patient cannot use other NNRTIs such as delavirdine (Rescriptor) or efavirenz (Sustiva). The second issue with viral resistance is that resistant strains of the virus can be transmitted. It has been seen that some patients diagnosed for the first time with HIV, who have never taken ARVs, are already resistant to some antiretroviral medications. It is important for patients to take their medications regularly and correctly, to avoid the emergence of resistance. Disease stage A discussion of past history and severity of OIs in the patients will help to understand the importance of adherence to treatment. It should be emphasized that progress of the disease can be delayed with treatment if taken regularly and correctly. The modified WHO staging for HIV infection and disease uses clinical and laboratory staging to determine disease stage. This staging has been used to predict the progress of the disease to stage IV. The predicted time for disease progression from stage III to IV is about 2 years and the estimated survival for patients in stage III and IV is 3.7 years and 1.7 years, respectively. Even among patients with the advanced disease, care must be taken not to discourage them with prediction of life expectancy. When started on time, ART delays disease progression and death. When started very late in the disease process, medications may not be able to control disease progression. CD4 counts It is important to discuss the CD4 cell count with patients. The discussions should cover the following points: CD4 cell counts are a measure of the patient s immune status HIV attacks CD4 lymphocytes 208 HANDOUT

231 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects CD4+ T cell counts CD4 cells are lymphocytes with CD4 receptors that play a critical role in the function of the immune system to fight off infections. They are also called T cells. The virus is particularly attracted to CD4 cells and destroys them, thus lowering the body s immunity against infections. Measuring the number of CD4 cells in the body is one method of determining how well the immune system is functioning. A person with a normally functioning immune system has between CD4 cells. When CD4 counts fall to below 200, patients who have HIV infection and are not on preventive medications may develop a host of opportunistic infection (OI), PCP AIDS (related pneumonia, recurrent herpes zoster, fungal infections, cancerous skin lesions, etc.) Treatment with antiretroviral medications reduces the number of virus in the body and thereby decreases the destruction of CD4 cells. With successful treatment, CD4 cell counts increase, restoring immune function and patients experience fewer or no OIs. CD4 cell counts can rise anywhere from 50 to 150 cells to more with successful treatment. This rise may take several months as it depends on how severely the patient s immune system has been affected at the start of the treatment. Patients with CD4 cell counts at or below 200 cells/cm 3 are eligible to receive antiretroviral medications (these guidelines are subject to revision). Lower CD4 counts signify advanced HIV disease CD4 cell counts increase with treatment Lower CD4 counts are associated with an increase in the number of episodes of OIs and continued disease progression. Higher CD4 counts indicate a lower risk of OIs and improved health status. Patients should know their CD4 cell count and monitor how it changes with treatment. Knowledge about the disease improves levels of adherence to treatment. Viral load NACO does not recommend viral load test among patients on ART. It is desirable to discuss the viral load with patients even when it may not be available for routine monitoring. The discussion should cover the following points: Viral load measures the amount of HIV in the blood Higher viral load levels signify increased risk of transmitting infection Treatment with ART results in viral load reduction Patients start to feel better when the viral load decreases The patient should understand how viral load measurements change in response to effective treatment. HANDOUT 209

232 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects Viral load Viral load tests measure the amount of HIV virus in the bloodstream. If the viral count is high, it means that the virus is in a period of greater activity, replicating (producing copies of itself) and further infecting new cells. Viral load tests, when available (they are very expensive and require advanced laboratory facilities), are used to determine the need for therapy and assess prognosis. Successful treatment with highly active ART (three-drug cocktail) should result in a reduction in the viral load. The viral load should/can go down 10-fold in the first eight weeks and then further to undetectable levels in weeks. The rate of viral load decline is affected by the baseline CD4 cell count, initial viral load, potency of the regimen, adherence to treatment, prior antiretroviral medication use and the presence of OIs. Viral loads tend to be the highest during initial acute HIV infection (acute HIV syndrome) and in advanced disease. SIDE-EFFECTS OF DRUGS What are side-effects? Side-effects are unwanted effects of a drug. Medications are prescribed for a specific purpose, such as to control HIV. Anything else the drug does is a side-effect. Some side-effects are mild, such as a slight headache. Others, like liver damage, can be severe and, in rare cases, fatal. Some go on for just a few days or weeks, but others might continue as long as the patient is on medication, or even after it is stopped. Who gets side-effects? Most people taking anti-hiv medications have some side-effects. In general, higher amounts of drugs cause more side-effects. Also, if the body processes drugs more slowly than normal, the patient may have higher blood levels and maybe more side-effects. Patients should be taught to deal with side-effects: Normal side-effects for the treatment they are taking When to get medical attention, i.e. before a side-effect goes on for too long, or has gotten severe Some mild side-effects can be treated with home remedies or over-the-counter drugs Patients should not stop taking any medications, or skip or reduce dose, without talking to the doctor. Doing so can allow the virus to develop, and might lose the use of some antiviral drugs Which side-effects are the most common? Dealing with drug side-effects can be a challenge to every doctor. Every anti-hiv drug, as well as drugs that prevent and treat infections, has its own set of possible 210 HANDOUT

233 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects effects. These may vary from one person to the next. Some people experience few or no side-effects at all, while some experience mild and manageable side-effects. Others have severe side-effects. Fatigue is tiredness that does not go away when the patient rests. It can be physical or psychological. Depression is more than just feeling sad. Chemical changes in the brain can cause fatigue and a lack of interest in daily activities. Diarrhoea is usually caused by an infection in the stomach or intestines. Bacteria, parasites, fungi, or viruses can cause the infection. Lipodystrophy is a condition when a collection of changes in body shape occur in people taking anti-hiv medications. Skin problems: Some medications cause rashes. Most are temporary, but in rare cases they indicate a serious reaction. Peripheral neuropathy is a disease of the nerves. The peripheral nerves are all the nerves except for the brain and spinal cord. Anaemia is low red blood cells. Nausea and vomiting are common symptoms found among patients on ARVs. Weight loss can be a serious problem in HIV disease. It can result from some of the side-effects discussed in this section such as vomiting, nausea, dry mouth, anemia or fatigue. Dry mouth can result from taking certain medications. Before starting any therapy, discuss possible side-effects with the patients. Many patients experience an adjustment period when starting a new therapy. This period usually lasts about four to six weeks when the body adapts to the new drug. Throughout this time, the patient may experience headache, nausea, muscle pain and occasional dizziness. These kinds of side-effects lessen or disappear as the body adjusts to medication. THE NEED FOR GUIDELINES ON ADHERENCE Adherence is defined as a patient s ability to follow a treatment plan, take medications at prescribed times and frequencies, and follow restrictions regarding food and other medications. Both patients and health-care providers face significant challenges with respect to adherence to ART. Once initiated, ART is a life-long treatment that consists of multiple medications to be taken two to three times a day with varying dietary instructions. These medications have side-effects, some of which may be temporary while others may be more permanent requiring a change of treatment. Inadequate adherence to treatment is associated with detectable viral loads, declining CD4 counts, disease progression, episodes of OIs and poorer health outcomes. In the past one-and-a-half decades, lessons learnt have indicated an increasingly central role of adherence to the success of ART. Care and support services that have HANDOUT 211

234 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects a component of ART have also included adherence support as part of their clinical services. While the importance of adherence to achieving success in treatment is acknowledged in treatment guidelines, our understanding of factors associated with high and low adherence seems to have lesser clarity. SIGNIFICANCE OF ADHERENCE TO ART Adherence has been rightly called the Achilles heel of ART. The consequences of low adherence are serious for the individual, for public health and for the optimal use of limited health-care resources. For the individual, lower levels of adherence are associated with the development of viral resistance, treatment failure and increased risk of disease progression. The prognosis for individuals who have experienced multiple treatment failure is uncertain. From a public health perspective, an increase in the prevalence of resistant virus as a result of low adherence is likely to result in an increased transmission of the resistant virus to newly infected individuals. Acquired resistance has a negative impact on subsequent ART response. CHALLENGES IN TAKING ART ART consists of three or more antiretroviral medications to be taken in combination. In addition to ARVs, patients also have to take medication for treatment or prevention of OIs. In addition, some ARVs also require specific food and fluid restriction. Antiretroviral medication controls the replication or multiplication of HIV. Even when the virus becomes undetectable in the blood with successful ART, there are some sites in the body where drugs are unable to reach the virus. These sites are called sanctuary sites. Therefore, the virus cannot be completely eradicated from the body and continues to remain hidden in these sanctuary sites. The virus emerges when ART fails or is stopped. As the virus cannot be eradicated, ARVs have to be taken regularly, long-term, for the rest of the patient s life. HIV infection can therefore be managed but not cured. IMPORTANT FACTORS THAT PREDICT HIGH ADHERENCE The optimal time to begin ART remains a controversial issue and expert opinion on the matter is divided. Various factors have a role to play in fostering and maintaining high adherence. Patients themselves have the most fundamental role to play. Low adherence does not restrict itself to social class, age or gender but is widespread and largely unpredictable. Moreover, adherence rates vary not between individuals but also within the same individual over time. Cultural and socioeconomic factors influence 212 HANDOUT

235 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects adherence to medication. Religious beliefs about illness and medication impact adherence. Processes of socialization and imbibed values often promote the idea of placing the health-care needs of others before one s own requirements. This is often seen in India, especially in cases where both partners may be infected. The mental health status of the individual is an important factor determining the level of adherence. High levels of stress and depression negatively impact adherence. One s own perception of the disease is also a significant contributor. Experience indicates that people who believe that they have the ability to survive tend to show better adherence. Given the fact that low adherence is widespread and largely unpredictable based on demographic characteristics, withholding treatment on the grounds of assumptions about an individual s adherence behaviour is highly unjustifiable. Access to ART and adherence support services need to be provided to all patients. The move from the word compliance to the word adherence in the latter part of the 1990s relates to the recognition that successful therapeutic outcomes are reflections of an effective partnership between the clinician and the patient as opposed to expectations from the patient to submit to demands from their doctors. This fact has also given recognition to the multidisciplinary approach in HIV/AIDS therapeutics. The appropriate use of skilled professionals allied to medicine contributes significantly to successful therapeutic outcomes. Requirements enforced by chosen regimens contribute to effective adherence to treatment. Regimens that fit in and around an existing lifestyle are more likely to be adhered to than regimens that require substantial changes in the daily routine. Additional adherence factors relating specifically to regimens include the potential for harmful drug interactions and side-effects. The influence of side-effects causes practical problems such as missed doses due to nausea, vomiting, diarrhoea or at times, even fatigue causes people to sleep through dosage timings. ROLE OF COUNSELLORS IN PREPARING THE PATIENT FOR ART Patient preparation is an important step that goes a long way in getting patients to take treatment correctly as prescribed over a long term. Preparation includes the initial assessment of the patient and can be done over three to four visits before initiating ART. The preparation process is important for both patients starting treatment for the first time (treatment-naïve) as well as those who may have used ARVs in the past (treatment-experienced). For treatment-naïve patients, the preparation process helps patients HANDOUT 213

236 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects To understand the challenges of taking ART To think about the impact the treatment will have on their lives To make a commitment to long-term treatment For treatment-experienced patients, the preparation process helps patients To re-evaluate their commitment towards treatment To identify potential and actual barriers To address these barriers and adhere to treatment The Health Belief Model of behaviour change is based on the theory that patients usually perceive a threat to their health (in terms of severity and susceptibility) and expect certain outcomes before they adopt new behaviours and develop the selfefficacy to make the change. Based on this theory, the process of behaviour change in a person is thought to have five stages. (i) Pre-contemplation: When the patient is unaware or not interested in changing behaviour, (ii) Contemplation: When the patient thinks about behaviour change, (iii) Preparation: When a patient actively decides to change, (iv) Action: When the patient works towards changing behaviour, and (v) Maintenance: When a person is able to sustain behaviour change for more than six months. PREPARATION OF THE PATIENT The preparation process works on the principles described below. It gives patients the time to understand their disease and its severity, and to understand the need to take medications to gain health benefits. It helps the patient to make a commitment to take treatment regularly and correctly in order to achieve the desired health outcomes. The preparation process helps to empower patients before starting treatment. Establishing trust between the patient and the provider The first step in preparing the patient is to establish trust. This is an ongoing process that is strengthened over time. An assurance of confidentiality, a non-judgemental attitude, mutual respect and clear communication of information contributes greatly to developing a trusting relationship between the provider and the patient. Introducing to the treatment and adherence programme A discussion about the ARV programme, health facility, medication availability, laboratory facilities and support services helps to familiarize the patient with the treatment programme. An introduction to the staff providing services and 214 HANDOUT

237 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects Establishing a treatment plan A discussion about the treatment regimen should cover the following points: medication names, dosing instructions, food and fluid intake requirements, and storage of medications. It is extremely important for the patient to know and understand their treatment regimen to enable them to take an active role in managing their HIV disease. A discussion about potential side-effects and ways to manage them; when to seek care and how to contact providers should be included. Preparing the patient in advance about the side-effects, that they might expect to see, removes the surprise or fear and prevents patients from stopping medications on their own. A discussion on the plan for routine follow-up should be included. Counsellors should establish a contact system so that patients can contact the provider in the case of need, medication side-effects, illness, psychosocial problems, etc. Providers may also need to contact the patient in case of missed appointments. Telephone numbers and addresses should be exchanged. Patients should be encouraged to discuss their travel plans in advance so that extra medications can be issued. familiarizing the patient with the clinic layout are important steps in putting the patient at ease. It is important to emphasize that disease progression can be delayed with treatment, if taken regularly. Patients should be given a positive message. Patients who have adhered well to their treatment are in good health more than a decade after they started treatment. Assessing the patient s health status Learn about the patient s health through a detailed medical history. This includes an assessment of the general health status, past illnesses and hospitalizations, and mental health. Patients who have experienced serious infections or hospitalizations may perceive their illness as serious and adhere better to treatment. Patients with severe mental illness may need help with taking medications regularly. Overall health A discussion on the overall physical and mental health status, ability to be in control of their lives, and ability to conduct routine daily activities sets the stage for a discussion on the importance of taking medications regularly. A detailed medical history forms the basis for understanding some of the barriers to adherence. What patients can expect to see with treatment A discussion on the changes in the CD4 counts and viral load measurements with successful treatment should be included. Emphasize the connection between regular HANDOUT 215

238 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects and correct medication-taking with improving immune function, improvements in general physical conditions, weight gain, fewer OIs and slowed progression to AIDS. The importance of adherence Preparatory counselling should emphasize the importance of adherence to treatment to achieve viral load suppression and success in treatment. Patients should understand the link between regular intake of medication or higher adherence with a decrease in the viral load, increase in CD4 cell counts and success in treatment. Consequences of non-adherence, such as ongoing increase in the viral load, decrease in CD4 cells and immune function, and disease progression should be discussed. The counsellor should emphasize the need for taking every dose every day and correctly with respect to time intervals and dietary instructions. A twice-daily dose is to be taken 12 hours apart, a thrice-daily dose is to be taken eight hours apart, etc. Prior use of ARVs A discussion on prior use of ARVs and experience with adherence to treatment is important. Patients with prior adherence problems or irregular use of ARVs would need added support and counselling. A counsellor should get information on other medications that the patient may be taking to assess drug interactions and side-effects. Patient s beliefs and attitudes Learn about the patient s beliefs and attitudes towards HIV and treatment. Positive attitudes and beliefs support adherence. Patients who believe that treatment is beneficial, are able to make a commitment to long-term treatment, and are confident that they will be able to take medications correctly and regularly, and tend to adhere to better treatment. Social support and socioeconomic situation The initial assessment and preparation should include a discussion on the sources of social support for the patient. Does the patient live alone or with their family? Have they disclosed their HIV status to the family? Does the patient have a friend or a family member that they expect support from? The discussion should include sources of support from outside the family such as non-governmental organizations (NGOs), people living with HIV/AIDs (PLHA) support groups, religious or faith-based organizations or workplace programmes, etc. Learn about the socioeconomic situation of the patient: housing, employment and income, number of dependent family members, migrant status, living conditions 216 HANDOUT

239 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects factors that may influence regular and correct intake of medications. It is important to discuss the patient s daily routine (employment, work timing, eating and sleeping patterns), HIV confidentiality issues at place of work and at home, medication storage and travel plans so as to identify areas where patients may have problems and need support. An understanding of the patient s daily routine and lifestyle helps to better integrate medication intake into the daily routine. Treatment reminder cues can be identified based on the patient s daily routine. Treatment reminder cues include typing medication intake to mealtime or specific routine activity such as leaving for work, notes written to oneself and placed at strategic points in the house, medication kept at a strategic location in the house. PRE-ART ADHERENCE COUNSELLING First counselling session It is important to assess the patient s knowledge of HIV/AIDS, clear misconceptions and educate them and, if required, their families on HIV/AIDS. Information should be provided that HIV is a virus, that there are different routes of HIV transmission, immune system weakens over time, OIs can occur, how healthy living practices can strengthen the immune system (e.g., good nutrition, exercise, rest, social support, positive attitude toward life). This is similar to the pre-test information provided at the VCTC or PPTCT. Issues relating to ART that need to be addressed are: ART is not a cure but a treatment that suppresses the virus and improves the immune system ART does not prevent transmission of the virus hence behaviour change and safe behaviours need to be adopted Regular clinical follow-up and laboratory investigations would be required Adherence to the medication regime is important Potential barriers to adherence need to be identified General side-effects of ART and how to manage them Other health-related (physical or mental) aspects Issues related to substance use (alcohol, illicit drugs) Diet and Nutrition Financial difficulties Support services that may be required Answers to questions the client may have Follow-up visits need to be planned Other important issues are disclosing the status to family and preparing the guardian to participate in treatment. HANDOUT 217

240 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects Follow-up counselling session Follow-up sessions at regular intervals help provide appropriate information, clarify misinformation, and re-emphasize the need to adhere to treatment. Review the topics discussed during the previous counselling session HIV/AIDS, ART and the importance of adherence. It is important to discuss the role of family as the primary care-provider and its support in ART adherence. It is important that patients understand names of each medication, dose and time of medication; dietary needs, and tests as prescribed by the doctor. Patients should be helped with developing strategies to adhere to medication such as using a monthly date calendar to mark medication intake, using symbols like the sun indicating morning and the moon night marked on the envelope with medicines to indicate time to be taken, or help identify time (e.g. using a title song of a TV serial) to indicate time to take medicine. In families where one patient receives medication, patients may choose to share the same with their spouse or partner. Patients need to understand the importance of taking the complete dose prescribed to them. Patients should be encouraged and instructed to report any serious adverse effects to the physician immediately. Emergency services and how to access them should also be explained. The preparation process should empower clients to understand the need to take medications to achieve health benefits. It helps the patient to make a commitment to take treatment regularly and correctly, to achieve the desired health outcomes. The counsellor should maintain notes of each session by maintaining a diary, or by developing formats for the same. Counselling for adherence is an ongoing process and patients would require counselling throughout their life. Patients should be assessed on adherence to the medications, side-effects should be identified and if required appropriate referrals should be made. Obstacles or barriers to adherence and strategies to overcome them, emphasis on HIV prevention to reduce the risk of transmission or re-infection with the virus needs to be discussed. STRATEGIES AND TOOLS TO ENHANCE ADHERENCE Perhaps the greatest way that adherence in HIV therapy differs from adherence in other chronic illness is the lack of immediate symptoms or consequences when adherence fails. This lack of rapid response places most of the responsibility for adherence on the mind and, less so, on the immediate reactions of the body. Multidisciplinary modalities and support systems are really the only feasible solution. The strategies and tools listed below are not exclusive and definitely do not function in isolation. Each individual patient will finally require a tailor-made strategy. 218 HANDOUT

241 a. Counselling Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects Counselling forms the mainstay of any treatment programme. Counselling aims to improve patient s knowledge about the disease, the medications and its side-effects. Counselling helps the patient to set goals, to develop positive beliefs and perceptions and to increase self-efficacy. In addition to counselling, patients often need other forms of support to be able to adhere to treatment. Adherence tools are helpful for many patients. Since the patients themselves are the fundamental factor influencing adherence, the involvement of the individual is of key significance. Patient education involves information about the disease itself and the need for ART. Reviewing written information with each patient, describing technical terms in simple language and asking patients to repeat instructions may be helpful. Efforts should be made to avoid uncomfortable situations where the patient s lack of or lower levels of literacy are revealed. This encourages a sense of trust in the provider and self-efficacy in the patient. It is essential to avoid promoting ART as the miracle drug, especially in conditions that operate within the health framework of India. Initiating ART is not usually an emergency. It helps to give enough time for evaluation of the patient s knowledge, understanding and attitude towards therapy. Identifying concerns and misconceptions helps in the involvement of the individual in the treatment process. Initiation of ART must be preceded with evaluation of the motivation and commitment of the patients to treatment. Assessment and management of mental health factors before initiation and at regular intervals is essential. All care providers must be aware of and alert to signs of depression and/or psychological distress in patients. An understanding of the patient s lifestyle and daily routine are essential to help them plan drug timings, prompts, etc., e.g. a person s daily television programme could be an effective cue for medication. The manner in which environmental and social factors influence adherence should be assessed regularly. Such factors include housing, employment, relationships, and drug and alcohol use. It is important for health-care workers to obtain the wider involvement of local, non-government as well as communitybased organizations to enhance support networks for PLHA. Wherever possible, undergoing a dry run using placebos instead of medications may be useful in identifying possible barriers to optimal adherence. Every patient prescribed ART must have their adherence measured and recorded on regular clinic visits. Patients may require help in planning ahead for weekends, vacations, etc. Encourage patients to get a refill of their medication a few days before their HANDOUT 219

242 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects medications are to get over. This ensures that the patient will not lose out on doses due to lack of stock. Patients will also need help in issues of self-disclosure. Privacy requirements in taking medication must be discussed and planned. Encourage patients to maintain a daily diary or journal in which they take notes of all that is important to them. For example, when was treatment initiated; feelings towards the disease; issues and routine difficulties, etc. Encourage patients to use recorders/planners for marking doses taken/missed, etc. b. Pillboxes Pillboxes are containers for storing medication with dividers for each day and each dose within the day. This makes it easy for patients to take doses correctly. Pillboxes with electronic reminders are also available. Some pharmacies in the west even distribute pre-loaded pillboxes. A possible disadvantage of the pillbox in developing country settings may be its visibility in situations where patients need to hide medications from others due to confidentiality reasons. Patients who are illiterate or very sick may need help to fill the pillboxes correctly. c. Electronic devices Many treatment programmes in developed countries use electronic devices to enhance adherence to medications. Devices range from beepers to alarms to watches that remind patients to take medications on time. Electronic pagers that are linked to the internet are used to send messages to patients. Electronic devices need to be discreet to avoid stigma and confidentiality related issues. These tools may not be practical in developing country settings. MEMS can be used both to measure adherence as well as a reminder tool for patients. d. Telephone reminders Telephone reminders are being tried out in some studies on adherence. There are several limitations to its use: it is labour intensive for staff, patients must have a telephone at all times and cost issues. Internet based confidential reminder services are also being used. e. Medication diaries These are diaries in which patients record the time and date of medication intake, missed doses and reasons for missed doses. These can serve as useful records of side-effects or other problems patients may experience. This is a useful tool to identify patterns of use and reasons for missing doses. f. Buddy system The Buddy system relies on a friend or family member to help the patient to take medications regularly reminding the patient to take his medication on time, offering 220 HANDOUT

243 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects encouragement to keep going, helping to keep hospital appointments, providing support, etc. g. Pill charts Pill charts are used to visually display pills (colour and shape), names and dosage for each medication and are used by the nurse or health provider during counselling. This is a useful tool for patients with literacy problems. All the strategies outlined above serve as enablers for patients, helping them to receive their treatment. h. Directly Observed Therapy (DOT) DOT is an intensive strategy in which patients take their medication under the supervision of adherence staff. In TB DOTS, health workers observe the intake of all medication doses for the entire treatment period of 6 9 months. TB DOTS is more regimented and provides a tighter monitoring of medication intake. In the case of ART, it is not practical to observe all doses as most HAART regimens have multiple doses and treatment is lifelong. Therefore, only some doses are observed for a fixed period of time (a few months). In some countries, this is called modified DOT or directly administered antiretroviral therapy (DAART). Modified DOT can be done at health centres, in community-based organizations or even at patient s home. In the management of HIV infection, a modified DOT strategy, through frequent patient provider contact, is used as a behavioural intervention that helps patients to develop an understanding of the treatment; to develop good treatment taking behaviour; to receive support during the first few weeks of ART when patients have short term side-effects; and to develop a trusting relationship with providers. i. Incentives Several programmes in the USA use incentives such as telephone cards, transport and food coupons, shopping coupons, movie tickets, tickets to sports events, etc. to increase effectiveness of ART intake. Adherence is a dynamic behaviour Adherence levels change over time. Adherence is determined by a matrix of inter-related factors that shift over time. No factor stands alone. Adherence requires an integrated, multidisciplinary approach: physicians, nurses, counsellors and pharmacists. Adherence requires a combination of adherence promoting strategies. HANDOUT 221

244 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects Adherence from pill counts % Adherence = Number of pills patient should have taken number of pills missed Number of pills patient should have taken x 100 Name of medication Number of pills dispensed Number of pills patient expected to have taken (A) (take into account whether patient has come early, on time or after the refill due date) Number of pills patient actually took (take into account remaining pills and whether patient has come early, on time or after the refill due date) Number of pills missed (B) % Adherence A B x 100 B E.g. d4t one tablet taken twice daily 60 (for 30 days) 54 (patient came in 3 days early) 50 (10 pills remaining when they should have been only 6) x = 92.5% Adherence could be <100% when patients have taken fewer pills than required or >100% when they have taken extra pills by mistake. Adherence from self-report Adherence measured using a self-report will only reflect the adherence over the period of recall, e.g. 3 days in the table below. Patients should be asked about missed doses: How many doses of d4t did you miss yesterday, the day before that and the day before that (3 days ago)? Number of doses patient should have taken number of doses missed % Adherence = Number of doses patient should have taken x 100 Name of medication Yesterday (missed doses) Day before yesterday (missed doses) The day before that (3 days back) (missed doses) % Adherence E.g. d4t one tablet taken twice daily x = 67% 222 HANDOUT

245 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects Antiretroviral drugs, main adverse reactions and follow-up action/tests Drugs Adverse reactions Follow-up action/test 1. Nucleoside reverse transcriptase inhibitors (NRTIs) (i) Zidovudine (3 azido-2, 3 dideoxythymidine) Initial headache and nausea (usually temporary) Anaemia, leucopenia (neutropenia) Myopathy Clinical examination Blood count CPK (ii) Didanosine (2,3 dideoxyinosine) (iii) Lamivudine (iv) Zalcitabine (2,3 dideoxycytidine) v) Stavudien (2,3 didehydrodidoxythymidine) Gastrointestinal disturbance Polyneuropathy (long-term treatment) Pancreatitis Nausea, vomiting Polyneuropathy Ulcerative stomatitis Pancreatitis Peripheral polyneuropathy (common) Abnormal LFT Pancreatitis (rare) Clinical examination Clinical examination Amylase Liver function tests (LFT) Clinical examination Clinical examination Amylase Clinical examination Liver enzymes Amylase 2. Non-nucleoside reverse transcriptase inhibitors (NNRTIs) (i) Nevirapine Skin rash (common) Elevation of the level of liver enzymes Clinical examination Liver enzymes (ii) Delavirdine Skin rash (common) Abnormal LFT Clinical examination Liver enzymes 3. Protease inhibtors (PIs) (i) Indinavir (ii) Ritonavir (iii) Nelfinavir Nausea, gastrointestinal disturbances, headache, dry skin Elevation of the level of bilirubin Kidney stones/flank pain Diabetes mellitus (rare) (Glucose, erythrocytes) Haemolytic anaemia (rare) Liver dysfunction (rare) Nausea, gastrointestinal disturbances Paresthesias Elevation of the serum levels of liver enzymes, urate glutamyltranspeptidase (GT), creatinekinase (CK), triglycerides Gastrointestinal disturbances (around 20% of patients) Hyperglycemia and lipodystrophy Clinical examination Bilirubin Urinary dip tests Clinical examination Liver enzymes Clinical examination Clinical examination Analysis of serum levels of: Liver enzymes, urate, Analysis of glucose in the urine Clinical examination Analysis of glucose in urine Liver enzymes HANDOUT 223

246 Module 5 Submodule 1 Antiretroviral therapy: Counselling and medical aspects 224 HANDOUT

247 Module 5 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care Handout Submodule 2: The purview of counselling in HIV/AIDS home-based care Session objectives At the end of session trainees will be able to: To understand the background and scope of home-based care as a methodology in the management of HIV/AIDS To understand the objectives of home-based care To understand the special counselling requirements in the spectrum of home-based care services To understand the outcomes of home-based care INTRODUCTION Home-based care as a methodology to health promotion was initially popularized in the mid-1900s. This approach has been widely used in the management of chronic health conditions. The magnitude and nature of the HIV/AIDS epidemic has made health-care providers, governments and international agencies consider home-based care as one of the most feasible and cost-effective systems for the management of HIV/AIDS. Home-based care is an approach to care provision that combines clinical services, nursing care, counselling and social support. It represents a continuum of care from the health facility to the community, family and the individual infected with HIV/ AIDS and back again. The component of counselling in this continuum is particularly important given the emotional and spiritual upheavals the disease causes. It is of utmost importance to remember that care in the home-based care does not end when a person succumbs to the disease, and is extended to the survivors, especially children. Home-based care as a methodology has a wide perspective. It helps change attitudes towards PLHA and towards the disease itself. Home-based care recognizes that a diagnosis of HIV does not necessarily mean that death is at hand. It helps reduce the stigma attached to the disease. Home-based care as a methodology helps provide the support that will help HIV-positive persons to extend their productive lives for many years. The disease of HIV/AIDS as of today remains without a cure and without a vaccine, HANDOUT 225

248 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care and is ultimately fatal. Prevention efforts are yet the backbone of the management of this epidemic. It is here again that home-based care has an important role to play. When an entire community is involved in the process of care, it increases not only the community s access to care but also enhances the process of involvement in prevention activities. THE RATIONALE AND MEANING OF HOME-BASED CARE The worldwide increase in the number of people infected with HIV and number of people developing AIDS calls for partnerships among family members, health-care workers, local communities, community-based organizations (CBOs), NGOs and the persons themselves in providing care and support to those infected and affected by the HIV /AIDS epidemic. Home-based care systems are being developed the world over as the best options for PLHA. Home-based care is a holistic collaborative effort between the health-care facility, the family and the community to enhance the quality of life of PLHA and their families. Objectives of home-based care To facilitate a continuum of care and support to PLHA extending from the healthcare facility to the home and family To promote family and community awareness of HIV/AIDS prevention and care To empower PLHA, the family and community with the knowledge needed to ensure long-term care and support To reduce stigma and discrimination associated with HIV/AIDS within families as well as communities To create an effective network of referral services from institutional health-care facilities and into the community, and from communities to adequate health setups as required To develop home-based care as the vital link between prevention and care To mobilize both human and fiscal resources essential for the sustainability of the system THE INVOLVEMENT OF PLHA Models that recognize the importance of the contribution made by PLHA are better able to respond to the epidemic and create a further space within society for the enhanced involvement of PLHA. Thus an active involvement of PLHA removes the long-held notion that they are passive recipients of care and support services. There are four levels of involvement of PLHA in community and home-based care programmes. (i) Access: Use of the service (ii) Inclusion: Working as support staff or volunteers, providing peer outreach or home visits. 226 HANDOUT

249 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care (iii) Participation: Providing HIV/AIDS services either as volunteers or staff, using their experience and training (iv) Greater involvement: Designing services and managing organizations, engaging in advocacy activities and public speaking This kind of meaningful involvement helps in improving providers attitudes and understanding of issues affecting PLHA and creates a more supportive environment. THE COMPONENT OF COUNSELLING IN HOME-BASED CARE People with HIV/AIDS experience a variety of social support needs, psychological distresses and spiritual yearnings. These needs are felt in varying intensity throughout their lives. The phase when a person finds out his HIV status is a very difficult and sensitive stage. To a large extent, how the person will manage his life with HIV will depend on adjustments made during this stage. Support also needs to intensify during phases of illness. It has been seen that often, when people with HIV fall sick intermittently, it is not viewed as a phase of illness but rather as a progression of the disease which brings the end closer. Support needs are also very intense in cases when there is a loss of partner or one s child to the disease. Reduced income or employment comes as a major obstacle to the emotional and spiritual well-being as the HIV-positive individual may either be denied employment or be unable to generate income due to phases of ill health. SPIRITUAL CARE Illness is a major life event that can cause people to question themselves, their purpose and meaning in life. It disrupts their careers, family life and the ability to enjoy life. Palliative care has long recognized that, in addition to physical and psychological symptoms, patients with chronic illness suffer existential distress with regard to the meaning of life, the fear of death and the realization of being separated from loved ones. These issues take on a larger significance in the context of HIV/ AIDS due to the stigma and judgement that accompany PLHA. Clinical experience shows that people cope with suffering by finding meaning in it. Spirituality has a critical role to play, because the relationship with a transcendent being or concept can give meaning and purpose to people s lives. Spirituality is recognized as a factor that contributes to health in many people. The concept of spirituality is found in all cultures and societies. It is expressed in an individual s search for ultimate meaning through participation in religion and/or belief in God, family and humanism. All these factors can influence how patients and health-care professionals perceive health and illness and how they interact with one another. It is important that all members in a home-based care team accept and honour all approaches to existential concerns. This requires open-mindedness, cultural sensitivity and a willingness to learn from the life experiences of others. HANDOUT 227

250 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care Much of medical training has to do with finding a cure or fixing a problem. This may no longer be possible in chronic illnesses which have no known cures. To continue to care for patients when disease-specific therapy is no longer available is where spiritual care becomes so critical. The basic principles of spiritual care are common to the principles of counselling and involve compassion and the ability to be present for the patient in the midst of their suffering. Although illness may disrupt a person s life, it also offers an opportunity to see life in a different way. The role of counsellors is crucial in helping patients appreciate aspects of life they have never noticed before and to find new priorities that make life have a meaning and purpose. It is important to include spiritual assessment or history as part of the overall clinical assessment of a patient. Doing so enables the provider to asses spiritual needs and resources, mobilize appropriate spiritual care and enhance overall care-giving. Assessment enables the inclusion of spiritual concerns into therapeutic plans. A high amount of vigilance is required on the part of health-care workers to avoid the imposition of their own beliefs. Once a spiritual assessment has been made appropriate interventions should be offered. While spiritual and religious interventions can be provided by clinicians and counsellors, including a pastoral care provider or religious leader into the health-care team ensures that the team becomes familiar with religious and spiritual issues. Some examples of spiritual practices are meditation, guided imagery, art, yoga, religious rituals and prayer. SHARED CONFIDENTIALITY WITHIN THE LOCAL COMMUNITIES Home care is effective in reducing stigma. It builds the patient s self-confidence, promotes involvement of the family, and enhances prevention. Successful homecare teams include not only professionals but also helpers and volunteers from the community and CBOs. Home-care teams are characterized by an expression of caring that is distinct from providing care. They are sensitive to the shared confidentiality that normally flourishes within close-knit local communities. Shared confidentiality within groups frequently exists when potentially stigmatizing issues are at play, such as HIV, domestic violence and drug abuse. Matters of private significance to people, and their immediate family and friends, are often shared with other people in the immediate living environment. Confidential sharing is characterized by issue-centered confidentiality in this group context, rather than by person-centred confidentiality. Health-care workers in the field commonly come across such instances. The following case demonstrates this. The case is an excerpt from the home-based care team s diary of the Kripa AIDS programme operating in the Vasai region of the Thane district in Maharashtra. The identifying details have been kept out of the case description. 228 HANDOUT

251 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care Munshi, a young Koli (fisher community) man hails from a remote village in the Vasai region. The only way to access this village nestled within a fort is by boat. On the reference of his family physician, Munshi was brought to the centre by his family. The patient was examined and initial treatment was planned. In the following week, the team made its first visit to the home of the patient before officially registering him on the home-based care system. The community received them well and the team came back with the feeling that the community seemed to be aware of the patient s illness. However, no direct references were made. After a time, the patient did not turn up for his regular follow-up and the team went back to ascertain the health of the person and look into the cause of his failure to follow up. Even before the team reached the house of the patient they knew that the patient s lack of followup was due to his alcoholism. The community supported the patient through rehabilitation for his alcoholism and today he is back to fishing for a living along with the other men of his village. The Koli community is a close-knit community where secrets of a home are secrets of a village. Rapport-building here is not just with the patient and the family, but with the entire community. DEALING WITH GRIEF AND BEREAVEMENT The experience of chronic, debilitating disease in loved ones and their death can be an experience of profound sadness and loss. The multidimensional responses to loss are all part of the grief process which is even more complicated with the association of HIV/AIDS to it. There are unique challenges and needs in the bereavement process for people coping with HIV/AIDS. Grief is the normal dynamic process that occurs in response to any type of loss. This process encompasses physical, emotional, cognitive, spiritual and social responses to the loss. It is highly individualized depending on the person s personal perception of the loss and is influenced by context and concurrent stressors. PLHA and their caregivers often experience complicated grief reactions. There is usually a chain of reactions throughout the disease process right from the time the individual is informed about his seropositive status. Personal experience of symptoms, witnessing other people experiencing symptoms and societal and health-care worker responses all add to the complications in the grief process. Often enough, caregivers are also HIV-positive and are dealing with their own physical health issues as well as facing personal loss and witnessing the loss of loved ones. When health-care professionals are trained to identify feelings of grief and bereavement in their patients, they are better able to facilitate this period by Identifying and legitimizing feelings of sadness, anger, guilt and anxiety Encouraging the expression of these feelings Redefining terms related to expressions of grief, such as lose control or break HANDOUT 229

252 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care down can be reframed as emotional releases, which are normal expected aspects of coping with stress and grief Enabling people to complete unfinished business Encouraging people to live fully and enjoy life to the extent best possible The process of going through grief is an active one and requires effort. It is a process of accommodation and involves an adaptation to fit specific circumstances rather than a linear process with an endpoint. Thus, moving through grief requires the accomplishment of certain tasks (for more information see Module 7 Submodule 11). 1. Accepting the reality of the loss The first task of grieving is to acknowledge and accept the reality of the loss; the fact that the person is dead and will not return. This task takes times due to the numbness and shock often experienced by the grieving person. This also holds true when situations or death have been expected. Traditional rituals such as funerals or memorial services can help people accomplish this task. This public method of saying goodbye helps people confront the finality of the death. The primary aim of the facilitator is to help the grieving person accept the reality of their loss in their own time and at their own pace. 2. Experiencing the pain of grief This is the second task in the mourning process and the expression may include emotional, physical, behavioural, cognitive, spiritual and social responses to the loss. In AIDS-related deaths, the survivors often may be positive and experience both normal physical responses to loss as well as symptoms of the disease of HIV itself. Appropriate medical attention in such cases will be crucial. Sleep disturbances and appetite changes are some of the most commonly noted behavioural responses and also warrant the health-care team s attention. An often-neglected aspect of grief in AIDS-related deaths is the social response. Survivors often experience social isolation and stigmatization which hinders the entire process of grief. 3. Adjusting to the loss The third task refers to the work of developing the skills and filling the roles necessary to move forward without the lost person. Usually this task begins after some time and may include adjusting to living alone, being a single parent, getting a job, learning to manage finances and, at times, for PLHA it may also include the need to find other caregivers. Part of the coping process lies in dealing with all the firsts without the person the first holiday, first birthday. Grief responses can be triggered by the following factors: Cyclical precipitants events that occur regularly such as holidays and birthdays 230 HANDOUT

253 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care Linear precipitants one-time occurrences, such as the absence of the loved one on an important occasion Stimulus-cued precipitants include reminder-inspired reactions and can be elicited by people, places, belongings, music, etc. 4. Reinvesting energy from the deceased into new life This refers to the ability to transfer the emotional energy invested with the lost person into new healthy approaches to life. Signs that a person is learning to accommodate their grief include Focusing on self-care, Acknowledgement of the reality of the loss, Redefining identity, Emergence of new skills or roles, and Establishment of or reconnecting with a support system. It is important for the health-care team to maintain a therapeutic perspective in reaching out to the grieving. Remember that No one can take away the pain, A sense of helplessness should not stop the process of reaching out to the grieving, The value of being present is recognized by the grieving. In dealing with AIDS-related deaths, the health-care team has to face challenges in addition to dealing with grief. It is also important to address the concurrent stressors, substance abuse, mental health issues and the effects of racism and stigmatization. The team will also have to play a significant role in the advocating of accessible services and community resources. CARING FOR THE CAREGIVER People living with HIV are cared for by a variety of individuals including family members, community volunteers and health-care workers. It is these caregivers who are at the frontlines of the epidemic. A unique feature of the disease of HIV/AIDS is that often caregivers are also infected with HIV. Thus, they experience a parallel process of disease. Caregivers have special needs, which require attention, if not attended to there may be significant distress and burn-out issues. Home-based care programmes require a component that attends to the caregivers. The kind of support offered depends upon the resources available, however, there exist wide modalities of support systems, which can be built into the programme. A caregivers group to provide people the space to ventilate feelings and share experiences Training caregivers in basic care systems HANDOUT 231

254 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care Day care centres Counselling Respite care a person who will sit in for the caregiver and allow time out SUPPORT GROUPS AND NETWORKS Due to misconceptions and myths surrounding HIV/AIDS, PLHA often experience feelings of isolation, stigmatization and abandonment. In many settings, they fear rejection by friends and family, restrictions on travel, and exclusion from employment, housing and educational opportunities. These fears often lead individuals to hide their HIV status from loved ones and the community at large. In many countries, extreme isolation has led PLHA to form SHGs which give members support and strength. Peer support groups and networks of PLHA provide individuals with a sense of solidarity and understanding that they might not gain with trained counsellors and medical professionals. These groups offer opportunities for members to share experiences and discuss problems openly, which counteracts feelings of isolation, fear and despair. The groups often have role models for living positively with hope and purpose despite the unknown future. These groups also assist individuals to cope with HIV infection and empower them to engage in safer behaviours. As there is relatively little start-up funding involved and because they contribute to the overall well-being and security of communities, support groups are extremely cost-effective. Formation of support groups, including groups with counsellors who themselves may be infected with HIV, should be encouraged. When counsellors living with HIV are involved, clients/members have a role model with whom they can identify. It is now widely accepted that once clients know their HIV status, they can benefit from the support of other clients with similar concerns. To provide a context in which clients can continue to make positive life choices, it is recommended that counsellors help establish post-test clubs that include both negative and positive clients. Post-test clubs foster healthy living attitudes and help members avoid sexual risk. They also help members maintain focus and motivation. Note that counsellors might not play the main supportive role. Self-help support groups, whether comprising PLHA and/or their relatives, may be the primary source of support. There is some evidence that the benefits of support groups are occasionally greater than those of individual supportive counselling. There are support programmes for infected individuals, their families and orphans. NUTRITION AND HIV/AIDS As nutrition can affect the morbidity and mortality of PLHA, nutritional intervention 232 HANDOUT

255 Module 5 Submodule 2 The purview of counselling in HIV/AIDS home-based care is fundamental at all stages of illness. Weight loss, nutritional deficiencies, and malnutrition (particularly protein calorie malnutrition, or PCM) are common among PLHA. As HIV disease progresses, there is a simultaneous decrease in the lean body tissue and an increase in intracellular and extracellular water. Malabsorption, diarrhoea, oral/oesophageal complications, nausea/vomiting, and fever can compromise the nutritional status. The severe malnutrition that frequently accompanies AIDS can exacerbate the effects of the illness and compromise the quality of life. Several factors may contribute to HIV-related weight loss (wasting), including inadequate dietary intake, malabsorption of nutrients, abnormalities in metabolism and energy expenditure, and OIs. Reduced intake often results from loss of appetite (due to nausea), diarrhoea, and oral, pharyngeal, and oesophageal sores. Other factors associated with weight loss include depression, dementia, anorexia, and adverse drug reactions or interactions. Comprehensive nutritional intervention requires an experienced nutritionist or dietician. It is important that the counsellor identifies appropriate referrals for individualized long-term professional nutritional support and follow-up. However, before referring, the counsellor must discuss nutrition with his/her clients (for more information see Module 5 Submodule 3 on Nutrition). HANDOUT 233

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257 Module 5 Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA Handout Submodule 3: The role of diet and nutrition in the management of PLHA Session objectives At the end of the session, trainees will be able to: To understand the importance of nutrition in management of PLHA To understand the counselling strategies needed to follow food and nutrition habits INTRODUCTION There exists a well-established link between infection control and good nutrition. Good nutrition is essential for achieving and preserving health while helping the body to protect itself from infections. Few crises have affected human health and threatened national, social and economic progress in quite the way that HIV/AIDS has. The pandemic has had a devastating impact on household food security and nutrition through its effects on the availability and stability of food, and access to food and its use for good nutrition. Good nutrition cannot cure AIDS or prevent HIV infection, but it can help to maintain and improve the nutritional status of PLHA and delay the progression from HIV to AIDS-related diseases. It can therefore improve the quality of life of PLHA. Nutritional care and support are important from the early stages of the infection to prevent the development of nutritional deficiencies. A healthy and balanced diet will help to maintain body weight and fitness. Eating well helps to maintain and improve the performance of the immune system the body s protection against infection and therefore helps a person to stay healthy. HIV/AIDS AND NUTRITION The HIV virus attacks the immune system. In the early stages of infection, a person shows no visible signs of illness but later, many of the signs of AIDS will become apparent, including weight loss, fever, diarrhoea and OIs (such as sore throat and tuberculosis [TB]). Good nutritional status is very important from the time a person gets infected with HIV. Nutrition education at this early stage gives the person a chance to build up healthy eating habits and to take action to improve food security at home, particularly as regards to the cultivation, storage and cooking of food. HANDOUT 235

258 Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA Good nutrition is also vital to help maintain the health and quality of life of the person suffering from AIDS. Infection with HIV damages the immune system, which leads to other infections such as fever and diarrhoea. These infections can lower the intake of food because they not only reduce the appetite but also interfere with the body s ability to absorb food. As a result, the person becomes malnourished, loses weight and is weakened. One of the possible signs of the onset of clinical AIDS is a weight loss of about 6 7 kg for an average adult. When a person is already underweight, a further weight loss can have serious effects. A healthy and balanced diet, early treatment of infection and proper nutritional recovery after infection can reduce this weight loss and reduce the impact of future infection. A person may be receiving treatment for OIs and also perhaps combination therapy for HIV; these treatments and medicines may influence eating and nutrition. Good nutrition thus reinforces the effect of the drugs taken. HIV and nutrition in the Indian context There are various stages and phases when nutritional counselling can be introduced. It is important to remember that nutritional counselling must span the entire spectrum of HIV/AIDS counselling. It needs to include not only the person infected with HIV/ AIDS but also the entire family. In a country such as India, where nutritional requirements are still not well met among a major part of the population, prescribing specialized nutrition for PLHA may not be effectively implemented. There is a need to maximize resources and use culturally acceptable and low-cost nutritional resources to meet the needs of PLHA. A healthy and balanced nutrition must be included as one of the goals of counselling and care for people at all stages of HIV infection. An effective programme of nutritional care and support will improve the quality of life of PLHA by: Maintaining the body weight and strength Replacing lost vitamins and minerals Improving the function of the immune system and the body s ability to fight infection Extending the period from infection to the development of the AIDS disease Improving the response to treatment; reducing the time and money spent on health care Keeping HIV-infected people active, allowing them to take care of themselves, their family and children Keeping HIV-infected people productive, able to work, grow food and contribute to the income of their families 236 HANDOUT

259 Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA Fig. 5.1 Promotion of nutrition for people living with HIV/AIDS INCREASED NUTRIENT NEEDS OF PLHA When infected with HIV, the body s defence system the immune system works harder to fight infection. This increases energy and nutrient requirements. Further, infection and fever also increase the body s demand for food. Once people are infected with HIV they have to eat more to meet these extra energy and nutrient needs. Such needs will increase even further as the symptoms of HIV/AIDS develop. People with HIV/AIDS often do not eat enough because: The illness and the medicines taken for the disease may reduce the appetite, modify the taste of food and prevent the body from absorbing it Symptoms such as a sore mouth, nausea and vomiting make it difficult to eat Tiredness, isolation and depression reduce the appetite and the willingness to make an effort to prepare food and eat regularly There is not enough money to buy food HIV/AIDS reduces the absorption of food. Food, once eaten, is broken down by digestion into nutrients. These nutrients pass through the gut walls into the bloodstream and are transported to the organs and tissues in the body where they are needed. One of the consequences of HIV and other infections is that since the gut wall is damaged, food does not pass through properly and is consequently not absorbed. Diarrhoea is a common occurrence in PLHA. When a person has diarrhoea the HANDOUT 237

260 Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA food passes through the gut so quickly that it is not properly digested and fewer nutrients are absorbed. Reduced food intake and absorption lead to weight loss and malnutrition. When a person does not eat enough food, or the food eaten is poorly absorbed, the body draws on its reserve stores of energy from the body fat and protein from the muscle. As a result, the person loses weight because body weight and muscles are lost. The weight loss may be so gradual that it is not obvious. There are two basic ways to discover whether weight is being lost. Weigh the person on the same day once a week and keep a record of the weight and date (see Activity 4). For an average adult, serious weight loss is indicated by a 10% loss of body weight or 6 7 kg in one month. If a person does not have weighing scales at home, it might be possible to make an arrangement with a chemist, clinic or local health unit to weigh them. When clothes become loose and no longer fit properly. If a person loses weight, they need to take action to increase weight to the normal level. Weight is gained by eating more food, either by eating larger portions and/or eating meals more frequently. Some suggestions for gaining weight: More staple foods such as rice, maize, millet, sorghum, wheat, bread, potatoes, sweet potatoes, yams and bananas should be eaten. The intake of beans, soy products, lentils, peas, groundnuts, peanut butter and seeds, such as sunflower and sesame should be increased. All forms of meat, poultry, fish and eggs can form a part of the diet as often as possible. Minced meat, chicken and fish are easier to digest. Offal (such as kidney and liver) can be the least expensive source. Snacks can be taken regularly between meals. Good snacks are nuts, seeds, fruit, yoghurt, carrots, cassava crisps, crab crisps and peanut butter sandwiches. The fat content of the food can be gradually increased by using more fats and oils, as well as eating fatty foods oilseeds such as groundnuts, soy and sesame, avocados and fatty meat. If problems with a high fat intake are experienced (especially diarrhoea), the fat intake should be reduced until the symptoms are over and then gradually increase it to a level that the body can tolerate. More dairy products such as full-cream milk, sour milk, buttermilk, yoghurt and cheese should be introduced into the diet. Dry milk powder should be added to foods such as porridge, cereals, sauces and mashed potatoes. However, coffee and tea whiteners are not to be used as they do not have the same nutritional benefits as milk. Note that some people may find milk difficult to digest. It should be avoided if it causes cramps, a feeling of being full or skin rashes. Sugar, honey, jam, syrup and other sweet products can be added to the food. Meals should be made as attractive as possible. 238 HANDOUT

261 DEALING WITH DIET-RELATED PROBLEMS IN PLHA Diarrhoea General recommendations Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA PLHA need to drink more than eight cups of fluid, particularly water, every day. It is also good to take fluid in other forms to replace the salts that have been lost and provide energy. Some suggestions are given below for easily digested foods and drinks that will help to rehydrate the body and provide salts, energy and vitamins. Recommended foods and drinks Soups, fruit juices diluted with water or an oral rehydration solution. Soft, mashed, moist foods such as soft vegetables and fruit, porridge from cereals, rice, bananas, potatoes and stews with refined maize meal, rice, barley or potatoes. Soft vegetables also include squash, pumpkins and carrots, and vegetable soup. To replace the lost minerals, soft vegetables and fruits, particularly bananas, mangoes, papaya, watermelon, pumpkins, squash, potatoes and carrots can be eaten. Refined foods (soluble fibres) such as white rice, maize meals, white bread, noodles and potatoes. Vegetables and fruits need to be peeled and cooked so that they can be better tolerated. Food should be eaten warm, rather than very hot or very cold. Small and frequent meals should be eaten. Foods and drinks to limit or avoid Some foods can make diarrhoea worse. It is advisable to remove one food at a time from the diet and see if it makes a difference. Fats can make diarrhoea worse and cause nausea. Fat intake should then be reduced, adding less or no cooking oil, cutting off visible fat or skin from meat and boiling food rather than frying it. However, fat is an important energy source and should not be omitted from a diet unless really necessary. Green, unripe and acidic vegetables and fruit such as tomatoes, pineapple and citrus fruit sometimes may not be tolerated. Milk sometimes may not be tolerated, so it needs to be seen whether heated milk or yoghurt is digested better. Coffee, tea and alcohol can worsen dehydration. They should be replaced by other fluids such as water, herbal tea and soups. Very spicy foods such as chillies and pepper may sometimes make diarrhoea worse. Foods such as beans, broccoli, cauliflower, cabbage, brussels sprouts, onions and green peppers that produce gas should be avoided. HANDOUT 239

262 Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA When not hungry, the best way to regain appetite is to eat To eat different foods until a person finds those that is liked and can try to have a mixed diet To eat smaller meals more often. A person can eat whenever the appetite is good and should not be too rigid about fixed times for meals It helps to try to drink a lot of water, milk, yoghurt, soups, herbal teas or juices throughout the day mainly after, and in between meals and should not drink too much before or during meals To add flavour to food and make it look and taste interesting, a person can squeeze some lemon juice over it or add spices such as, cardamom, fennel, coriander and cinnamon Fizzy drinks, beer and foods such as cabbage, broccoli and beans that create gas in the stomach and can make a person feel bloated A person may try rinsing one s mouth out before eating as it might make food taste fresher Light exercise such as walking outdoors, and breathing plenty of fresh air can stimulate an appetite To eat in a well-ventilated room away from cooking or unpleasant smells also helps Eating with family and friends can also help a person regain their appetite. If the person has to stay in bed, they can also join at the bedside Alcohol should be avoided. It reduces the appetite, weakens the body and interferes with medicines If the reason for lack of appetite is diarrhoea, nausea and vomiting, or a sore mouth, the guidelines to be followed are given later in this HO Nausea and vomiting General recommendations To avoid nausea and vomiting, it helps to sit up when eating. Also, one should not to lie down until one or two hours after eating. To drink plenty of fluids after meals. One should try not to prepare food by themselves. The smell of preparing or cooking food may worsen the feeling of nausea. Someone else can prepare food or foods that require little preparation can be eaten. Recommended foods to eat and drink If vomiting occurs, drinking small amounts of water, soups and spice teas helps. One can eat soft foods and go back to solid foods when the vomiting stops. Smelling fresh orange, lemon peel, or by drinking lemon juice in hot water or a herbal or ginger tea helps relieving the feeling of nausea. Eating dry and salty foods such as toast, crackers and cereal also helps. 240 HANDOUT

263 Foods to avoid Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA Fatty, greasy and very sweet foods can make nausea worse. It is better to remove one food at a time from the diet to see if it makes a difference. If so, that food should be avoided. What affects one person may not affect others. People need to find out what suits them best. There are medicines that can reduce nausea. These can be discussed with a doctor or a health worker. Below is a 7-day meal plan that may be easier to follow Everything else is the same, except for the lunch and dinner choices, But when you choose snacks or fruits, try to choose different ones each time. Breakfast: Snack 1: Lunch: Snack 2: Dinner: Bed time: 1 glass milk + 3 teaspoons skim milk powder + 1 katori poha/daliya/ chapatti 1-2 Pieces of fruit: 2 bananas or other sweet fruit (Either citrus or sweet, never both at the same time). If having severe diarrhoea (can still drink fruit juice but strain it) See list below 1 cup tea + 1 katori poha/daliya/chapatti See list below 1 glass milk + 3 teaspoons skim milk powder Each day, you can always choose to have the full meal with rice, dal, vegetable, and chapatti. But the selections have mixed some of these categories, so you do not necessarily have to prepare the full meal if you are feeling tired. Day 1 Lunch: Rice, tuar dal with sarso bhaji, fansi (green beans) vegetable, tomato, cucumber and carrot salad, 1 katori curd Dinner: Kichri with spinach, cabbage, potatoes, and whole moong and rice in equal parts, curd curry, white and red radish salad Day 2 Lunch: Dudhi chana dal, chapatti, sprouted moong salad with onion and kothmir, 1 katori curd Dinner: Rice, soya dal, potato/peas/tomato vegetable, raita with onions, cucumber, and sprouted moong Day 3 Lunch: Rice, udad dal, potato/spinach vegetable, carrot, beet and cucumber salad with lime, 1 katori curd Dinner: Ragi chapatti, matki dal, green tomato, stuffed parval vegetable, sprouted soya salad with onion and cabbage, buttermilk Day 4 Lunch: Missi roti (chana flour + wheat flour) with ambadi bhaji or bhakri (bajra, HANDOUT 241

264 Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA jowar or nachni) with ambadi bhaji, bhindi masala, sprouted soya salad with tomato and onions, 1 katori curd Dinner: Rice, tuar dal, chowdi vegetable/chapatti, sprouted matki, red radish, jaggery, carrot and cabbage salad, buttermilk Day 5 Lunch: Ragi chapatti, green tomatoes/brinjal vegetable, channa dal, sprouted chowli salad with carrots and sweet lime, 1 katori curd Dinner: Moong daal kichri, curd curry, sweet potatoes with chawli bhaji, green salad leaves, cucumber, tomato and onion salad Day 6 Lunch: Bajra bhakri, vaal and parval vegeatable, carrot, tomato and spinach salad, 1 katori curd Dinner: Rice, tuar dal with amaranth chapatti, gavar vegetable, beets and red and white radish salad, buttermilk Day 7 Lunch: Potato/methi stuffed chapatti, chana dal with sahijan kepatte (drumstick leaves), cucumber, onion and tomato salad, 1 katori curd Dinner: Rice, tuar dal, tendil + rajma vegetable, cabbage, tomato and kothmir salad with sweet lime, buttermilk BOTTOM LINE The above is only a guide. If you feel tired, you can put the vegetables in the dal or put everything in a kichri mix. You can mix and match the foods listed above You can also try to make simple foods such as upma or poha more nutritious by adding vegetables such as peas, carrots, onions, etc. USE ONLY SEASONAL FRUITS AND VEGETABLES as they are both cheaper and better for you Make sure you wash the raw vegetables thoroughly or even slightly cook them in order to reduce the number of microorganisms they contain When choosing pulses or vegetables, try to vary the colors so that you get a variety of nutrients. Foods of different colors contain different vitamins and minerals Source: Easy way to living healthy. Hamsafar Trust, Mumbai. Sore mouth or when eating is painful Soft, mashed, smooth or moist foods such as avocados, squash, pumpkins, papaya, bananas, yoghurt, creamed vegetables, soups, pasta dishes and minced food should be eaten. Liquids should be added to foods or dry food should be softened by dipping in liquids. 242 HANDOUT

265 Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA Drinking soups, cold drinks, vegetable and fruit juices also help. A straw can be used for drinking fluids. If the gums are painful and brushing the teeth is not possible, rinsing the mouth with bicarbonate of soda mixed with water will make the mouth feel fresh. Chewing small pieces of green mango, kiwi or green papaya may help to relieve pain and discomfort. Drinks such as spice teas, fermented sour cabbage water or yoghurt may help to ease a sore mouth when eating is painful. Foods and drinks to avoid Very spicy and salty foods such as chillies and curries. Acidic or very sour foods such as oranges, lemons, pineapple, vinegar and tomatoes. Food and drinks that are too hot or too cold should be avoided. Food and drinks should be kept at room temperature. Foods that need a lot of chewing such as raw vegetables, or are sticky and hard to swallow such as peanut butter. If candida (oral thrush) is diagnosed, sweet foods such as sugar, honey, and sweet fruit and drinks should be cut down on because sugar may make the condition worse. Other digestive problems General recommendations Chewing food well will make it easier to digest. Chopped papaya added to meat acts as a tenderizer and helps digestion. Fermented foods such as sour cabbage water, sour porridge, yoghurt and sprouts can be easier to digest and help the digestion of other foods. Recommended foods should be used as if they were medicine, particularly during and after antibiotic treatment. It should be eaten three times a day before or with meals and continued for two weeks. Foods to avoid People can experiment by omitting a particular food and see if it makes them feel better. Some people find fatty foods such as fried foods, chips, hard cheese, peanut butter and cream difficult to digest. However, they can go back to a normal mixed diet once they feel better. How to stop constipation Eating insoluble fibre, contained in foods such as raw vegetables and fruit, dried fruit, wholemeal dark bread, whole-grain cereals, nuts and seeds helps HANDOUT 243

266 Module 5 Submodule 3 The role of diet and nutrition in the management of PLHA Eating frequent and small meals regularly throughout the day Drinking plenty of fluids throughout the day Being active and exercising regularly helps to stimulate bowel movement and improve digestion How to prevent a bloated feeling People should not drink too much with food. Foods such as cabbage, beans, onion, broccoli, brussels sprouts and cauliflower, and cold fizzy drinks that create gas in the stomach should be avoided. Some people find it difficult to digest whole-meal foods and foods rich in dietary fibre, particularly when the diet also contains sugar and sugary foods. They should try to exclude sugar and sugary foods from the diet for a while. Most of us work in low-resource areas where a nutritionist may not be a part of the team. It is therefore important for counsellors to include in their tool box of counselling skills a set of relevant and low-cost recipes which could help meet the nutritional requirements of PLHA. 244 HANDOUT

267 Module 6 Module 6 Submodule 1 Counselling for blood safety Handout Submodule 1: Counselling for blood safety Session objectives At the end of the training session, trainees will be able to: Understand blood safety norms concerning blood donors Understand the importance of pre-donation counselling for all blood donors Understand the importance of identifying high-risk blood donors for referral to pre-test counselling Understand the need to motivate blood donors to become regular voluntary blood donors BLOOD SAFETY Background Blood is a critical element of medical treatment. Daily, a large number of units of blood are transfused for a variety of illnesses and conditions, including accidents, burns, heart surgery, organ transplants, leukaemia, cancer, sickle cell anaemia, thalassaemia, haemophilia and many others. Unfortunately, blood transfusion itself can be a cause of illness. Currently, the blood supply is much safer than it was in the past due to the importance given to voluntary blood donation, stringent donor selection criteria, increased testing protocols for donated blood units and strict quality management programmes in blood transfusion services. It should be noted that the quality of blood depends on the selection of blood donors in blood banks as well as blood donation camps. However, pathogens (viruses, bacteria and parasites) can still be transmitted through donated and transfused blood. Implementation of blood safety in blood banks Every blood bank in India is advised to ensure that safe blood is provided to each patient. The incidence of HIV transmission through blood transfusion has appreciably reduced after introducing safe blood transfusion practices. Availability of safe blood is achieved by 1. Promotion of voluntary blood donation programmes and particularly motivating repeat donors 2. Proper donor counselling for donor and recipient safety prior to donation 3. Proper identification, deferral and counselling of high-risk donors HANDOUT 245

268 Module 6 Submodule 1 Counselling for blood safety 4. Proper screening of donated units for transfusion transmitted infections (TTIs) 5. Promoting rational use of blood among clinicians 6. Assuring the quality of blood donation by motivating voluntary and repeat donors. Despite strict screening protocols, the incidence of HIV transmission through the use of blood and blood products is 2.99% (2004), down from more than 3.1% in Proper donor counselling for donor and recipient safety The pre-donation counselling of a donor is thus of great importance for selecting healthy donors whose blood can be considered safe. Pre-donation counselling requires the donors to answer a set of questionnaires and undergo a thorough medical, physical and laboratory examination to determine their suitability as a donor. The questionnaire has to be designed in such a way that it covers all aspects of donor and recipient safety. It will help to collect a unit of blood from the donor without any untoward effect on him/her; this blood unit can be considered absolutely safe for transfusion to the recipient. These sets of questionnaires help identify high-risk donors, who will be deferred from donating blood, and referred for voluntary counselling and testing (VCT). When a voluntary donor donates blood as a repeat donor, his/her previous report can be verified for TTI markers. If they are found to be negative for all TTIs, the donors can be counselled to donate regularly and to promote safe behaviour practices. Proper identification, referral and counselling of high-risk donors Many of the replacement donors or a few first-time voluntary blood donors fail to report high-risk factors during pre-donation interviews. The counsellor should have adequate skills to carry out an interview with such donors and to assess the possibility of high-risk factors among the donor by taking them into confidence. Once high-risk donors are identified, they should be counselled regarding blood safety norms, stopped from further blood donation and should be referred to the VCT for pre-test counselling, followed by confirmatory testing and post-test counselling. Proper screening of donated units for TTI In India, screening of each donated blood unit for HIV 1 and 2, HBsAg, HCV, malaria parasite (MP) and syphilis is mandatory. This protocol does not cover many other viruses/parasites; also, no protection is offered against emerging/unknown pathogens. In these circumstances, a thorough and proper history should be taken from the donor to help eliminate transmission of many of these pathogens. Even 246 HANDOUT

269 Module 6 Submodule 1 Counselling for blood safety with the best possible testing kits available and excellent testing procedures, chances that infections may go undetected either due to window phase of infection or very low level of antigen/antibody in the blood sample still exist. There are many such testing limitations, which may lead to false reporting and transfusion of infected blood. Every counsellor should be aware of such possibilities and discuss the matter in detail with the donor during the pre-donation interview. PRE-DONATION COUNSELLING IN BLOOD BANKS AND PRE-TEST COUNSELLING IN A VCT CENTRE Pre-donation counselling of blood donors involves all major areas concerning donor and recipient safety. The donor is interviewed with the objective of selecting them as a blood donor; they are told that this will cause no untoward problems during or after donation. Besides, the safety of the blood unit collected from such a donor is assured by medical and laboratory investigations along with a lifestyle inventory which covers all aspect of donor and recipient s safety. The questionnaire has been designed to ascertain the past and present history of donors for any illness, family history, and any high-risk behaviour, medications, history of travel, and any rejection earlier as a blood donor. Blood donors who are found to be seroreactive for HIV markers in blood banks are referred for further pre-test counselling and confirmation of results to VCTCs. Counselling in VCTCs stresses more on HIV-related behaviour or practices. It enables and encourages people with HIV to access appropriate care and is also effective for prevention of HIV infection and transmission. This service assesses individual risk factors and behaviour. Clients learn about the major modes of HIV transmission, safe sex and using disposable needles. Problems of pre-donation counselling These are as follows: Lack of trained manpower Nonexistent donor counselling Confidentiality of donor not maintained High-risk donors are neither identified nor counselled Hence, the quality of blood suffers. PROMOTING RATIONAL USE OF BLOOD AMONG CLINICIANS Currently, more stress is given to encouraging clinicians to practise the rational use of blood. This will help reduce unnecessary transfusions, select the right blood component in the right dose for the patient and reduce donor exposure. A wellplanned transfusion can definitely reduce the risk of transfusion, and thereby reduce the associated morbidity and mortality. Appropriate use of blood and blood products HANDOUT 247

270 Module 6 Submodule 1 Counselling for blood safety Fig. 6.1 Flow chart for blood safety: Blood donors, blood bank and VCTC will help improve the shortage of blood in blood banks by avoiding unnecessary transfusions. ENSURING BLOOD SAFETY AND IMPLICATIONS FOR VCT While the vast majority of HIV infections in India are due to sexual transmission, the transfusion of unsafe blood and blood products accounts for 2.99% of the HIV infections in the country. This form of transmission has nothing to do with the behaviour pattern of individuals. Blood safety remains an important component to provide adequate and safe blood and blood products to patients, and to ensure the safety of both donors and recipients. VCTC can provide their expertise for HIV prevention through safe blood transfusion to the high-risk group and can contribute to blood safety programmes. Counselling donors on testing of donated blood units Donors are made to understand that their blood units will be subjected to mandatory tests, which will be kept entirely confidential. All donated blood units in the blood bank have to be routinely screened for the five mandatory tests of HIV, HBV, HCV, MP and syphilis. The units found to be reactive for any markers are discarded outrightly. Donors have to sign the consent form in the designated donor card. The concerned donor has the right to know the result of the screening test and consequently their status. VCTC and blood donors The Action Plan for Blood Safety (NACO, 2003) categorically states that the results of screening for TTI can be revealed to blood donors. Donors, if found to be reactive for a particular marker, and who want to know about their status, should be referred 248 HANDOUT

271 Module 6 Submodule 1 Counselling for blood safety to the concerned specialty for further testing and management. If the donor is found to be positive for syphilis, they can be referred to an STD clinic for further management, while those found positive for HBV/HCV can be referred to the gastroenterology division. Since the high-risk factors for HBV, HCV and syphilis are similar to those for HIV, linkages may be established to refer such donors to the VCTC at the discretion of the clinician. Donors found seroreactive for HIV are referred to a VCTC for further confirmation of the test and pre-test counselling. In the VCTC, the standard protocol of counselling and testing will be followed. After pre-test counselling, a fresh blood sample will be collected, the blood will be tested and the test result will disclosed to the client during post-test counselling. If the donor is HIV-positive, the VCTC counsellor will suggest the donor not to donate blood again. The counsellors at the VCTC should be aware of blood safety norms while counselling donors. They should explain the relationship between unsafe blood and HIV transmission to the donor. Counsellors should restrain them from further blood donation if they are confirmed to be positive for HIV. VCTCs can play a vital role in improving blood safety programmes by targeting high-risk groups and counselling them for HIV prevention. PROMOTION OF VOLUNTARY BLOOD DONATION PROGRAMME It has been clearly documented that blood from a voluntary donor who is not remunerated is qualitatively superior to that collected from professional donors. Since voluntary donors do not expect any monetary returns and donate exclusively on altruistic grounds, they do not tend to hide any of their medical problems from the Blood Bank Medical Officer during pre-donation counselling. They are fully aware of the quality of their blood as well as the test for TTI, which will be carried out on their donated blood units. Some problems might still exist while selecting voluntary donors for the first time. Hence, collecting blood from repeat voluntary blood donors is stressed worldwide, as the TTI status of these donors is already known. The Supreme Court of India has put a ban on blood collection from professional donors. Many of these visit blood banks as replacement or related donors, which can be detrimental to safe blood collection. The danger of collecting blood from such donors should be highlighted during mass awareness camps or in counselling centres. VOLUNTARY BLOOD DONATION IN INDIA Blood collected from voluntary (not remunerated) blood donors can ensure improvement in the quality of the blood. Though voluntary blood donation all over India has demonstrated a definite rise over the years, it has yet to reach 50% in many of the states. Some states such as West Bengal (84.4%), Maharashtra (81.3%), Tamil Nadu (61.4%) and Gujarat (60.4%) have done reasonably well in HANDOUT 249

272 Module 6 Submodule 1 Counselling for blood safety Fig. 6.2 Incidence of voluntary blood donation zone-wize (for the year 2003) Fig. 6.3 Incidence of voluntary blood donation in high-performing states voluntary blood collection because of increased public awareness. Workshops on motivating people for voluntary blood donations and the celebration of 1 October as National Blood Donation day are being organized. Voluntary blood donors who are donating for the first time are being motivated to become regular donors. Repeat voluntary blood donors are considered to be safe as they are already counselled against any high-risk behaviour and their blood has been screened for various TTIs. In the interim period between donations, they should be counselled to refrain from any unsafe practice. Most blood banks in India still have to rely on replacement donors or relatives to meet the demand for blood. Some replacement donors are healthy and can be considered safe. They can be motivated to subsequently become voluntary donors. Fig. 6.4 Incidence of voluntary blood donation in low-performing states However, in many blood banks, blood is collected from professional donors who are recruited as replacement donors, thereby compromising on the collection of safe blood. Lack of trained manpower and nonexistent pre-donation counselling in these blood banks are considered the major factors for the lack of detection of these high-risk donors. This group of donors has to be identified and deferred from further blood donations. They should be counselled, if possible, on the blood safety norms as explained in the pre-donation questionnaires. 250 HANDOUT

273 Module 6 Submodule 1 Counselling for blood safety BLOOD DONOR QUESTIONNAIRE AND CONSENT FORM Name and address of the Blood Bank: License No: Blood Unit No: CONFIDENTIAL ( ) Tick wherever applicable Please answer the following questions correctly. This will help to protect you and the patient who receives your blood. Name: Male/Female: Date of birth: Age: Father s/husband s name: Occupation: Organization: Address for communication: Telephone: Mobile: Would you like to call us on your mobile: Yes/No Fax no. (if any): (if any): Have you donated previously: Yes/No If yes, how many times: When last: Your blood group: Time of last meal: Did you have any discomfort during/after donation? Yes/No Tick ( ) the appropriate answer: 1. Do you feel well today? Yes No 2. Did you have something to eat during the past 4 hours? Yes No 3. Did you sleep well last night? Yes No 4. Have you any reason to believe that you may be infected Yes No by hepatitis, malaria, HIV and/or venereal diseases: 5. In the past 6 months have you had a history of the following? HANDOUT 251

274 Module 6 Submodule 1 Counselling for blood safety Unexplained weight loss Repeated diarrhoea Swollen glands Continuous low-grade fever 6. In the past 6 months have you undergone any of the following procedures? Tattooing Ear piercing Dental extraction 7. Do you suffer from/or have suffered from any of the following diseases? Heart disease Lung disease Fainting spells Cancer/malignant disease Kidney disease Typhoid (past 1 year) Diabetes Epilepsy Sexually transmitted Allergic disease Hepatitis B/C infection Tuberculosis Malaria Abnormal bleeding 8. Are you taking or have you taken any of these in the past 72 hours? Antibiotics Steroids Aspirin Vaccinations Alcohol Dog bite/rabies vaccine (past 1 year) 9. Do you have any history of surgery or blood transfusion in the past 6 months? Major surgery Minor surgery Blood transfusion 10. For women donors, Are you pregnant? Have you had an abortion in the past 3 months? Do you have a child less than a year old? Is the child still breastfeeding? Are you having your periods (menstruation) today? Yes/ No Yes/ No Yes/ No Yes/ No Yes/ No 11. Would you like to be informed about any abnormal test result? Yes/ No At the address furnished by you? Yes/ No If not, where? 12. Have you read and understood all the information presented and answered all the questions truthfully, as any incorrect statement or concealment may affect your health or may harm the recipient? Yes/ No I understand that: (a) Blood donation is a totally voluntary act and no inducement or remuneration has been offered. 252 HANDOUT

275 Module 6 Submodule 1 Counselling for blood safety (b) Donation of blood/blood components is a medical procedure and that by donating voluntarily, I accept the risks associated with this procedure. (c) My blood will be tested for hepatitis B and C, malarial parasite, HIV and venereal disease in addition to any other screening test required to ensure blood safety. I prohibit any information provided by me or about my donation to be disclosed to any individual or government agency without my prior permission. Date: Time: Donor s signature: General physical examination: Weight (in kg): Pulse: Hb (g/dl): B.P.: Temperature: Accept Defer Reason Signature of Medical Officer: BLOOD SAFETY BEGINS WITH A HEALTHY DONOR HANDOUT 253

276 Module 6 Submodule 1 Counselling for blood safety 254 HANDOUT

277 Module 6 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection Handout Submodule 2: Counselling issues related to HIV STI co-infection Session objectives At the end of the training session, trainees will be able to: Provide information about different types of sexually transmitted infections (STIs) prevalent in India Discuss with clients the interrelationship between STI and HIV infection, relative risk of acquiring HIV infection in the presence of genital ulcer and discharge, and the impact of HIV infection on STIs Propagate the national policy on STI control including syndromic management of STIs Stress and demonstrate the correct use of condoms BACKGROUND INFORMATION WHO estimated that 340 million new cases of syphilis, gonorrhoea, chlamydial infection and trichomoniasis occurred throughout the world in 1999 in men and women aged years. About 4% 6% of the population suffers from sexually transmitted infections (STIs) every year. In India, NACO completed a community-based study on the prevalence of STIs in rural and urban areas of India in STIs include diseases that are transmitted by sexual intercourse, resulting in clinical diseases that involve the genitalia and other parts of the body involved in sexual interaction. More than 20 organisms produce various STIs; these include: 1. Syphilis 2. Chancroid 3. Donovanosis 4. Lymphogranuloma venereum (LGV) 5. Genital herpes 6. Gonorrhoea 7. Chlamydial infection 8. Trichomoniasis 9. Bacterial vaginosis 10. Candidiasis, etc. Broadly, they are divided into ulcerative (first five) and nonulcerative STIs. The presence of STIs facilitates the sexual transmission of HIV. There could be a 2 9- HANDOUT 255

278 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection fold increased chance of HIV transmission in the presence of genital ulcer, and a 2 5-fold increase in the presence of genital discharge. RELATIONSHIP BETWEEN STIs AND HIV INFECTION 1. The predominant mode of transmission of both HIV infection (more than 80%) and other STIs is the sexual route. 2. Concurrent HIV infection alters the natural history of classic STIs. 3. STIs are a marker for high-risk behaviour which could lead to HIV infection. 4. Many of the measures for the prevention of sexual transmission of HIV and STIs are the same. 5. STI clinical services are important access points for persons at high risk, not only for diagnosis and treatment but also for counselling for HIV infection. 6. Management of STIs may reduce HIV transmission, particularly in developing countries, in the early epidemic stage. The prevention, early diagnosis and treatment of STIs can be an important part of the HIV prevention strategy. WHO and NACO endorse the syndromic approach as an effective means of treating symptomatic STIs promptly when rapid and sensitive laboratory tests are not available, particularly at the district, subdistrict and primary health-care level. IMPACT OF HIV INFECTION/AIDS ON OTHER STIs The natural history, clinical manifestations and treatment of classic STIs are altered by concurrent HIV infection. A few HIV STI co-infections are discussed below: Syphilis HIV appears to affect the epidemiology, clinical manifestations and treatment of syphilis. Unusual or severe manifestations of syphilis have been increasingly reported in HIV-infected patients due to some degree of immunodeficiency, and there is reduced response to conventional therapeutic regimens in these individuals. Chancroid Chancroid, caused by Haemophilus ducreyi (H. ducreyi) remains a common cause of infectious genital ulcers in developing countries including India. H. ducreyi infections may be both a marker for increased risk of HIV infection and a co-factor for HIV transmission. The following variations are noticed in the natural history and therapy of chancroid: Genital ulcers tend to be larger and persist longer. Multiple inguinal swellings are seen. The disease is less responsive to standard antibiotic therapy. 256 HANDOUT

279 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection In patients infected with HIV, treatment may appear less effective; an increased dose and more prolonged treatment may be necessary. All patients should be followed up weekly until there is clear evidence of improvement or cure. Herpes genitalis Herpes simplex virus infections occur more frequently, are more severe, and have altered presentations in immunocompromised patients secondary to HIV infections. Most lesions of herpes in HIV-infected persons respond to acyclovir, but the dose has to be increased and treatment given for longer than the standard recommended period. Granuloma inguinale Donovanosis (Granuloma inguinale) produces a high proportion of genital ulcer disease (GUD) in India. In the presence of HIV infection with moderate-to-severe immunodeficiency, the lesion may be clinically larger and more extensive. Bursting of inguinal swellings producing ulceration may be seen. The disease may fail to respond to conventional treatment resulting in persistent ulceration. Lymphogranuloma venereum Lymphogranuloma venereum (LGV) is a rare cause of GUD in most settings and caused by Chlamydia trachomatis. There may be acute inflammation with bilateral swelling of the inguinal glands, which may burst and ulcerate in the presence of moderate-to-severe immunodeficiency due to HIV infection. Human papillomavirus Human papillomavirus (HPV), one of the most common STDs, presents as genital warts that may lead to carcinoma in HIV-positive patients. In immunocompromised patients, the genital wart lesions may be more florid, disseminated and often refractory to treatment. HIV infected women have been demonstrated to have higher chances of developing cervical carcinoma in the presence of HPV co-infection. The association between HPV and anal carcinoma in both men and women with HIV is almost as certain. Problems with management of STIs There are more than 500 STI clinics in medical colleges, district hospitals and in some municipal hospitals throughout India. But due to social stigma, only 5% 10% of people with STIs attend these clinics. The majority seek treatment from informal and traditional sources of health care or resort to self-medication. Thus, the management of STIs is often inappropriate, leading to various complications such as pelvic inflammatory diseases (PID), infertility and ectopic pregnancy, urethral stricture, stillbirth. Neonatal complications include blindness due to HANDOUT 257

280 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection maternal gonococcal/chlamydial infection and death due to congenital syphilis. Inadequate treatment of STIs also leads to the further spread of HIV infection. The other causes of poor health-care seeking behaviour are stigma and the asymptomatic nature of certain STIs such as gonorrhoea and chlamydial infection, particularly in women. Many people have limited understanding and awareness of sexual and reproductive health issues, thus, symptoms are either ignored or not associated with STIs. POLICY ON THE CONTROL OF STIs NACO has adopted a policy of integrating STI control into the existing health-care system, both in the public and private sectors. Special emphasis is being placed on the syndromic management of STIs at the primary health-care level to provide nonstigmatized services with greater acceptability and accessibility for patients while maintaining their confidentiality and privacy. Policy strategies include 1. Develop adequate and effective programme management. 2. Promote information, education and communication (IEC) activities for the prevention and transmission of STIs and HIV infection. IEC activities include raising awareness and prevention of inappropriate health-care seeking behaviour, educating people in responsible and safe sexual behaviour, and condom promotion. 3. Make adequate arrangements for comprehensive case management including diagnosis, treatment, individual education and counselling, partner notification, and screening for other diseases. Since laboratories have extremely limited facilities in most primary health-care settings, the syndromic approach has been favoured in the management of STIs because of its cost-effectiveness. 4. Create facilities for the diagnosis and treatment of asymptomatic infections through case finding and screening. SYNDROMIC MANAGEMENT OF STIS The traditional approach for the diagnosis of STIs includes the use of clinical experience to identify symptoms typical of a specific STIs, and use laboratory tests to identify the causative agent. Syndromic treatment is based on diagnosis of similar signs and symptoms produced by one or more organism. STI diagnosis Clinical diagnosis is accurate only in 50% of cases. Mixed infections are common. Mistreated or untreated infections can lead to complications and continued transmission. 258 HANDOUT

281 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection For laboratory diagnosis, skilled personnel and sophisticated equipment are needed to identify the causative agent of an STI. Laboratory tests for diagnosis are expensive and time-consuming. Treatment does not begin until the results are available. Testing facilities are not available at the primary level, where many people with STIs seek care. History taking Patients with problems in the genital area tend to be guarded and evasive in giving a history. With practice, health-care workers will be able to obtain a satisfactory history. Adopt a polite, friendly and non-judgmental attitude that would encourage the client to develop confidence and trust in you. Ask an open-ended question, such as What brought you to hospital? to initiate a dialogue. Phrase your questions in such a way so as to minimize the opportunity for the patient to mislead you. For example, When did you last have sex with someone? is preferable to Did you have sex with someone? Once the subject is broached and patient comfortable, closed-ended questions (calling for yes or no ) can be helpful in eliciting brief answers. To make an accurate diagnosis it is often necessary to ask more questions during the examination. Do not show annoyance if the patient s history has obvious discrepancies or contradictions. Sexual history should be taken from every patients presenting with STI symptoms. Medical and behaviour risk assessment Enquire about common symptoms such as discharge from the urethra in a patient with genital ulcers, or recurring genital ulcers in a patient presenting with urethral discharge. If the patient is to receive proper education and counselling, these must be preceded by behaviour risk assessment. Make sure that the patient is aware that the history will be kept strictly confidential. Enquire regarding: Advantages of the syndromic approach Complete STI management is offered at the patient s first visit. Treatment is more widely and rapidly accessible. Patients are treated for possible mixed infections by addressing all the important causes of a syndrome. Prevention and compliance are addressed through education, partner referral, and condom provision and promotion. HANDOUT 259

282 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection Partner information Spouse Regular (non spouse) Casual Assessment of test of STI Details of sexual encounters in the last three months Sexual practices Genital, anal, oral Protected or unprotected Risk factors Civil status: Married, living together, single, separated, widowed Occupation: Sex workers (male and female), seamen, workers in the tourist industry, transport workers, migrant workers Travelling: Travel abroad (holidays, business or employment) coming home only on weekends Casual sexual encounters (other than with regular partner) Using condoms, Type of sexual act (vaginal, anal or oral) Previous history of STI, Exposures during the last three months. Injections or blood transfusions Substance abuse: alcohol, heroin, etc. Medical history Any past STI Other illness Medications Drug allergies Source: WHO Regional office for South Asia, HANDOUT

283 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection Common symptoms of STI/RTI Women Dysuria, frequency, burning Vaginal discharge Dyspareunia Vulval itching Lymphadenopathy Genital ulcers Lower abdominal pain Abnormal growth or mass in genital area Skin rash Perianal pain Men Dysuria, frequency Urethral discharge Genital ulceration Lymphadenopathy Acute scrotal swelling, pain Abnormal growth or mass in genital area Skin rash Anal discharge (men having sex with men) Perianal pain Education and counselling should stress to clients that they should: Take the full treatment as per the dose and duration advised and cure the infection Abstain from sex during treatment to prevent spreading infection Help their sexual partners get treated Return for follow-up to make sure they are cured Use condoms to prevent re-infection Be faithful to just one partner Education/counselling on risk reduction Abstinence or a mutually faithful relationship with one partner is very effective in preventing STIs/AIDS. Condoms prevent all STIs including HIV. Early diagnosis and treatment of STIs is important. Counsel all patients with STIs regarding risk reduction and prevention of transmission. Explain how the STI is passed on and what can happen if it is not cured. Address the patient s questions and concerns, and try to solve them one by one. CONDOM PROMOTION Safe sex is any sexual practice that reduces the risk of passing on HIV infection/ STI from one person to another. The best protection is obtained by choosing sexual activities that do not allow semen, vaginal fluid or blood to enter the vagina/anus of the partner or to touch the skin and mucous membrane of the partner where there is an open cut or sore. This is possible by using condoms, either male or female, which can provide nearly 100% protection if used properly. HANDOUT 261

284 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection Talking about the use of condoms The counsellor must emphasize to clients of both sexes the importance of consistent use of condoms. Condoms are not foolproof against tearing and leakage, and must be put on carefully, properly and correctly. How to use a condom Be sure you have a condom before you need it. Each time you have sex, put a new and unused condom on the penis before it enters the vagina, rectum or mouth. Put the condom on only when the penis is erect. When putting on the condom, hold it so that the rolled rim is on the outside. If you are not circumcised, first pull the foreskin of the penis back. Do not pull the condom tightly against the tip of the penis but press the tip of the condom (nipple) with your index finger and thumb of one hand while rolling down the condom with the other hand towards the base of the penis. Unroll the condom all the way to the base of the penis If the condom tears during sex, withdraw the penis immediately and put on a new condom. After ejaculation, hold on to the bottom of the condom as you pull the penis out, so that the condom does not slip off, then take the condom off carefully without spilling semen. Wrap the condom in paper (such as newspaper) until you can dispose of it in a pit latrine, or a closed garbage bag, or by burying or burning it. Never re-use a condom Talking about the use of condoms The counsellor must emphasize to clients of both sexes the importance of consistent use of condoms. Condoms are not foolproof against tearing or leakage, and must be put on carefully, properly and correctly. Female condom Disadvantages More expensive than male condoms Unacceptable to many women and men May increase the risk for men if one condom is used by a female sex worker (FSW) with many male partners at a time (especially to be mentioned while counselling FSWs and their clients) 262 HANDOUT

285 WHERE TO REFER Module 6 Submodule 2 Counselling issues related to HIV STI co-infection 1. For STI management To the Medical Officer (MO-PHC), STI clinics of district hospitals, municipal hospitals and medical college hospitals where free treatment of all STIs is available. 2. For condom procurement From all public health institutions free of cost as mentioned above and by payment from medical outlets, vending machines, etc. Counselling, Partner Notification and Treatment and Follow-up Each patient should be properly counselled on a one-to-one basis about their risk behaviour, chances of acquiring STI/HIV infection, and the process of safer sexual behaviour. Counselling should be provided in a confidential manner. The patient should be encouraged to inform the sexual partner/s of their possible risk of infection and the need to refer them for evaluation, treatment and counselling. Clinical follow-up when appropriate is a part of comprehensive case management of STI. HANDOUT 263

286 Module 6 Submodule 2 Counselling issues related to HIV STI co-infection 264 HANDOUT

287 Module 6 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection Handout Submodule 3: Counselling issues related to HIV TB co-infection Session objectives At the end of the training session, trainees will be able to: Understand their role in the prevention and treatment of TB Understand HIV TB interaction ROLE OF THE COUNSELLOR The counsellor at the VCTC can help in the Revised National Tuberculosis Control Programme (RNTCP) by: Informing HIV-positive persons about the risks of developing tuberculosis (TB) disease. Educating HIV-positive persons about the symptoms and signs of TB, and the importance of reporting to the counsellor in the VCTC at the earliest. Ensuring that each and every person attending the VCTC with cough of more than three weeks duration is referred to the designated microscopy centre for three sputum examinations. Emphasizing the importance of sputum examination in the diagnosis of TB. Emphasizing that TB can be cured through regular and complete treatment. Emphasizing that the diagnosis and treatment of TB are free of cost at government health centres. Ensuring that patients diagnosed with TB are put on treatment under the RNTCP. Ensuring that patients with HIV/TB take the required drugs regularly under direct supervision. Emphasizing the importance of directly observed treatment (DOT). Emphasizing to all sputum-positive patients the importance of getting their contacts screened. Ensuring that symptomatic contacts are evaluated for TB. Helping the patient identify a convenient location for provision of treatment observation, and providing treatment observation at the VCTC itself if feasible. Keeping a record of patients referred from the VCTC for the diagnosis of TB. Submitting a monthly report of all the patients referred and diagnosed as having TB. TB BURDEN IN INDIA By the end of 2005, it was estimated by UNAIDS that worldwide there were more HANDOUT 265

288 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection Fig. 6.5 VCTC as a way to promote care and control of TB and AIDS DOTS: The 5 components Political commitment Diagnosis by microscopy Adequate supply of quality drugs Directly observed treatment Accountability than 40.3 million people living with HIV/AIDS (PLHA). Globally, one third of all PLHA are co-infected with TB. In India, by the end of 2004, there were an estimated million HIV-infected persons and an estimated 1.84 million HIV-positive individuals co-infected with TB. TB is the commonest opportunistic infection in HIV-infected persons. It is estimated that 50% 60% of HIV-positive persons in India will develop TB in their lifetime. Worldwide, two billion people are infected with TB; India accounts for one fifth of the new TB cases globally each year. Each day in India, more than people become infected with the TB bacillus and more than 5000 people develop the disease. Every year, 18 lakh people develop TB in India, of whom at least 8 lakh are infectious (sputum-positive). Fig. 6.6 India accounts for one fifth of the annual new TB cases globally 266 HANDOUT

289 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection Source: Provisional WHO Estimates, September 2003 Fig. 6.7 TB: Leading cause of death among adults (India) (in thousands) Source: Provisional WHO Estimates, September 2003 Fig. 6.8 TB: Leading killer among women (global) Every year, nearly 4 lakh people die of TB 1000 deaths per day; 2 TB death every 3 minutes. In India, TB kills 14 times more people than all the tropical diseases combined 21 times more than malaria and 400 times more than leprosy. TB kills more women than all causes of maternal mortality combined. Social and economic burden Direct and indirect costs of TB amount to Rs crore/year Loss of 17 crore workdays at a cost of Rs 700 crore/year More than children leave school as a result of their parents having TB More than women are rejected by their families on account of TB HANDOUT 267

290 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection What is TB? TB is an infectious disease caused by Mycobacterium tuberculosis (M. tuberculosis) bacilli. TB bacilli mainly affect the lungs, causing lung tuberculosis (pulmonary TB). However, in some cases, other parts of the body may also be affected, leading to extrapulmonary TB. Extrapulmonary TB is more common in HIV-infected TB patients compared to in HIV-negative TB patients. TB germs usually spread through the air. When a patient with untreated pulmonary TB coughs, sneezes or talks, they involuntarily throw TB germs into the air in the form of tiny droplets. These tiny droplets, when inhaled by another person, may cause TB. Untreated TB cases spread the infection to others in the community; each infectious patient can infect individuals in a year unless they are effectively treated. When patients with TB disease begin taking effective treatment, they stop spreading TB infection versus TB disease TB infection: Organism is present but dormant, cannot infect others. Person is not sick. TB disease: Person is sick and can transmit disease to others if in lungs 10% of individuals with TB infection will develop TB disease Each individual with active but untreated TB can infect people/year When does TB infection become a disease? Most likely to occur in first two years after infection If person becomes immunocompromised: HIV Cancer Chemotherapy Poorly controlled diabetes Malnutrition the germs within a few days to weeks. But unless they take the treatment regularly and complete it, they are likely to develop more dangerous forms of TB, known as drug-resistant TB, which they can spread to others. Once infected with M. tuberculosis, a person stays infected for many years, probably for life. The vast majority (90%) of people without HIV infection who are infected with M. tuberculosis do not develop the disease. The bacilli remain dormant in their bodies. About 40% of our population is infected with the TB bacillus. Infected persons can develop TB at any time. Various physical or emotional stresses may trigger progression of the infection to disease. The most important trigger is weakening of immune resistance, especially by HIV infection. 268 HANDOUT

291 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection Fig. 6.9 HIV and TB SYMPTOMS OF TB Pulmonary TB HIV-infected patients with TB can have: Cough with expectoration of more than three weeks duration, fever night sweats weight loss loss of appetite chest pain haemoptysis anaemia Extrapulmonary TB A person with extrapulmonary TB may have the following general symptoms: Weight loss Loss of appetite Fever Night sweats Sites and symptoms of active extrapulmonary TB disease Other symptoms depend on the organ involved: Lymph node TB: Swelling in the neck or armpit with or without discharge TB meningitis: Headache, fever, drowsiness, confusion, neck rigidity Spinal TB: Back pain, fever and, in some cases, swelling of the backbone Pericardial TB: Chest pain, shortness of breath. HIV TB INTERACTION Impact of HIV on TB HIV is the most powerful risk factor for progression from TB infection to TB disease. An HIV-positive person infected with M. tuberculosis has a 50% 60% lifetime risk HANDOUT 269

292 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection of developing TB whereas an HIV-negative person infected with M. tuberculosis has only a 10% risk of developing TB. This is especially important in India where it is estimated that almost half of the adult population harbours M. tuberculosis. In some countries, the HIV epidemic has tripled the number of TB cases. HIV-infected persons who become newly infected by M. tuberculosis rapidly progress to active TB disease. HIV has the potential to worsen the TB epidemic. HIV breaks down the immune system and makes patients highly susceptible to TB; these patients can then spread TB to other people. TB is the most common serious opportunistic infection occurring among HIVpositive persons and is the first manifestation of AIDS in more than 50% of cases in developing countries. Impact of TB on HIV The impact of TB on HIV can be summarized as follows: TB shortens the survival of patients with HIV infection. TB may accelerate the progression of HIV, as observed by a 6 7-fold increase in HIV viral load in TB patients. Worldwide, TB is the cause of death for one out of every three persons with AIDS. DIAGNOSIS OF TB Sputum examination All patients presenting with cough of more than three weeks duration should be investigated for TB. Sputum microscopic examination should be done in designated RNTCP microscopy centres. Microscopy centres are established in all districts for every one lakh population. They are located either in the community health centre (CHC), PHC, Taluk Hospital or a TB centre/hospital. Each centre has a skilled technician, trained intensively for sputum examination. To ensure quality control, a senior TB laboratory supervisor is appointed for every five microscopy centres. It is essential to examine three sputum specimens of a single patient before a conclusive diagnosis can be made. One sputum sample is not sufficient for diagnosis as the chance of detecting smear-positive cases is only 80% as compared to 93% with two samples and 100% with three samples. A spot specimen is collected on the patient s first visit. The patient is given a sputum container to bring in the early morning sample the next day. When the patient comes in with the early morning sample, the second spot specimen is taken. The result of the sputum examination is given to the patient at the earliest. 270 HANDOUT

293 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection TB suspects with three or at least two out of the three sputum positive smear results are diagnosed by the physician as having pulmonary smear-positive TB. They are further classified as new or old cases based on their previous treatment history, and appropriate therapy is prescribed. Patients with only one positive result out of three sputum smear examinations will be subjected to a chest X-ray examination. Patients who have one smear positive and a chest X-ray compatible with TB, as diagnosed by an MO, are considered to be having pulmonary smear-positive TB. TB suspects in whom all 3 initial sputum samples are smear negative, should be prescribed broad-spectrum antibiotics for days. Care must be taken to prescribe antibiotics (such as cotrimoxazole, doxycycline, amoxycillin) which do not have anti-tuberculous activity for such patients. It must be ensured that antibiotics such as fluoroquinolones (ciprofloxacin, ofloxacin, etc.), rifampicin or streptomycin, which are active against tuberculosis, are not used in such cases. Fig RNTCP diagnostic algorithm for pulmonary TB HANDOUT 271

294 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection Most patients are likely to improve with a course of antibiotics if they are not suffering from TB. But if symptoms persist, the patient is re-evaluated on the basis of repeat sputum examination (three smears) and X-ray examination. Thereafter, if in the opinion of the treating physician, the patient has tuberculosis, treatment is initiated accordingly. X-ray X-rays are difficult to interpret. There is a high risk of wrongly diagnosing a patient as having TB if X-ray is the only diagnostic criterion. A very large proportion of patients with an abnormal X-ray suggestive of TB do not actually have the disease. Only 50% of those with X-ray findings suggestive of TB may actually have the disease. Thus, if X-rays are used, overdiagnosis of TB will occur. The patient will unnecessarily receive drugs which could have been better utilized. Thus, microscopy is a more specific test than X-ray for the diagnosis of TB. TREATMENT OF TB Even in patients with HIV/AIDS, TB can be cured. Treatment for TB is provided free of cost at all government health facilities. Curing TB in patients with HIV/AIDS will immediately improve their quality of life and prevent further transmission of TB to other family members. Treatment with DOTS (Direct Observed Treatment, Short-course) for TB has been shown to prolong the life of HIV-infected persons by at least two years. DOTS is the WHOrecommended technical and management package aimed at achieving the twin goals of more than 85% cure rate and 70% case detection rate of new infectious cases of TB. HIV-infected TB patients who receive treatment with the same drugs but who are not in a programme of DOTS have a three-fold increased risk of death during treatment. Fig Microscopy is a more specific test than X-ray for TB diagnosis 272 HANDOUT

295 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection DOTS in the context of HIV DOTS can: Prolong life and improve its quality Stop the spread of TB Prevent emergence of drug resistant TB Reverse the trend of drug resistant TB Failure to use DOTS in the face of HIV infection can lead to worsening of the TB epidemic. Fig DOTS triples treatment success in India Fig DOTS cuts TB deaths seven-fold in India Fig DOTS prolongs survival of HIV-infected TB patients If effectively implemented, the DOTS strategy should cut the chain of transmission in the community by curing most of the infectious cases. Treatment in the RNTCP consists of two phases an initial intensive phase and a second continuation phase. The total duration of treatment is 6 9 months. Sputum microscopy is done regularly to monitor the response to treatment. The intensive phase lasts for 2 4 months. During this phase, a health-care worker or some other trained person watches as the patient swallows the drugs in his presence. Treatment is given thrice a week HANDOUT 273

296 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection on alternate days and every dose is directly observed. The continuation phase lasts for 4 5 months depending on the patient s response to treatment. In this phase, the first dose of the medicine is taken every week by the patient under direct observation, while the other doses are taken by the patient themselves. The patient should be instructed to bring the previous week s blister pack when collecting the next week s blister pack. It is extremely important that the patient undergoes regular and complete treatment in order to ensure complete cure and prevent the development of drug-resistant TB. Treatment of multidrug-resistant TB is extremely difficult and expensive. Fig Structure of RNTCP at the State level RECORD-KEEPING AND REPORTING The counsellor should keep a record of the number of persons attending the VCTC and inform MO-DOTS about their diagnostic outcome. The counsellor should maintain a live list of referrals between VCTC and RNTCP. The report should be compiled and submitted to the State Aids Control Society (SACS) every month. [See forms on the following pages]. 274 HANDOUT

297 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection HANDOUT 275

298 Module 6 Submodule 3 Counselling issues related to HIV TB co-infection 276 HANDOUT

299 Module 7 Module 7 Submodule 1 Group therapy Handout Submodule 1: Group therapy Session objectives At the end of the session, trainees will be able to: Identify the basic guidelines needed to conduct effective group therapy Delineate the main characteristics of group therapy Use the process and stages of group therapy in a simulation INTRODUCTION Group therapy has been acclaimed over the years as the most effective method of treatment for focus groups. Group therapy is appropriate for people living with HIV/ AIDS (PLHA) with an injecting drug use (IDU) background. Using group therapy as a powerful source for change is both an art and a skill. Here, as in an individual counselling relationship, the basic personality of the counsellor, their professional training and experience can help make a world of difference. The group therapy situation may be stressful for clients at the outset. Members who are strangers to each other look to the counsellor as the unifying force. The therapeutic process in a group always starts with interaction between the members and the counsellor. The counsellor s main role is to create a sense of oneness or belonging in a group that is homogeneous in their problems. The counsellor attempts to: Maintain a relationship characterized by warmth, empathy, concern, acceptance and genuineness Be sensitive and flexible to the needs of the group, all the while making valuable interventions through appropriate verbal and nonverbal behaviour Maintain a proactive attitude towards the clients Develop skills to counteract forces that are detrimental to therapy, such as unpunctuality, absenteeism, forming subgroups that threatens cohesion, etc. Encourage experiential feeling-level statements, thus helping members get in touch with their negative feelings such as shame, guilt, resentment, fear, etc. Get actively involved in shaping group norms Encourage one-to-one communication between group members HANDOUT 277

300 Module 7 Submodule 1 Goup therapy Guard against excessive criticism and frequent interruptions Encourage feedback Be a role-model participant Recognize that the group s power is more than one s own Resist the urge to quickly intervene with the right answers SOME BASIC GUIDELINES FOR EFFECTIVE GROUP THERAPY: 1. The number of members should be within the range of The optimal duration of each session is 90 minutes. 3. The minimum requirement for group meetings is five days a week while in-house; after discharge, follow-up meetings to strengthen resolve and provide support throughout the recovery process can be once or twice a week. 4. The physical environment should be a pleasant and quiet room that ensures privacy, which is a prerequisite for the meetings, with a circular seating arrangement to convey that all are equal. This seating also enables each member to be visible to the others, making it possible to have face-to-face interactions and to easily observe nonverbal communication. 5. Basic rules such as punctuality, regular attendance, staying for the entire session and not leaving midway, and not attending under the influence of drugs are to be followed. 6. The norms that help members function appropriately can be represented by CLIS : Confidentiality: What happens within the group stays in the group should be stressed repeatedly Listening: Maintaining eye contact and the willingness to listen to others feelings and words without interrupting. Interruptions are permitted only when: a member is repetitive a member is rambling without focusing on issues relevant to the topic of discussion a listener wishes to clarify understanding I statement: In order to own responsibility, encourage the use of the first person, namely I and me instead of the second or third person, e.g. we, you and they as statements using the latter lead to diffusion of ownership of one s own acts. I statements, on the other hand, help members speak only for themselves and own responsibility for their feelings, thoughts and behaviour Sharing: Open, honest and spontaneous sharing should be emphasized. To maximize gains, whole-hearted participation of the group is essential. Each member needs to remember that the more they put into the group, the more they will benefit from the experience. All participants are considered equal, irrespective of their drinking or drug-taking status, or the nature of the physical and emotional damage. However, the counsellor, as the facilitator of the group, need not share any details regarding themselves. 278 HANDOUT

301 Module 7 Submodule 1 Group therapy 7. Guidelines for giving and receiving feedback: Feedback is an essential component of group therapy. Some guidelines for giving feedback to clients before entering the group are given below. DO Talk about behaviour you can see. For example, I notice that you are late by 5 10 minutes every day Avoid sarcasm and condescending remarks while giving feedback Avoid advice; give only responses Encourage members to also share positive feedback Ask members to spontaneously give feedback and receive it openly Avoid being defensive Acknowledge the value of feedback and express appreciation Think about and build upon the feedback you receive for the sake of continuous exploration DON T Make judgemental statements such as, You have been lazy and irresponsible at work, so you cannot be upset now with your boss for criticizing you. You just have to take it. Instead say, You talked about your repeated absences, delay in submitting reports and not meeting sales targets. Your work has definitely suffered due to your addiction. You are now upset that your boss has expressed dissatisfaction. Considering your work pattern, this is not surprising and your boss reaction seems reasonable PROCESS OF GROUP THERAPY The process includes three phases: Early phase Beginning of the group: The first meeting Middle phase Substance of the group: Clients coming together, interacting, sharing, growing and changing in the counsellorês presence Last phase Completion of the programme and leaving the group Fig 7.1 Process of group therapy STAGES OF GROUP THERAPY Clinical observation is the key tool that shows how the group evolves and moves (flows) through the four stages of the process. Being familiar with the characteristics HANDOUT 279

302 Module 7 Submodule 1 Goup therapy of each stage (which is associated with its own set of feelings and behaviour) can help the counsellor identify the stage the group is in so as to be able to successfully aid the group. 1. Formative stage This stage consists of two substages (a) The first meeting: Early phase (b) The first stage (a) The first meeting: Early phase The members are generally very anxious about their first meeting. Therefore, introductions are needed. The counsellor initiates this process by introducing themselves, outlining the purpose of the group and soliciting introductions from the clients. This helps to set the tone for the group and can be done in several ways (refer to the box below for an example). The main intent of the first meeting is to: 1. Set a statement of purpose for the group; 2. Help them identify common factors between members to develop unity in the group; 3. Let them know that sensitive issues will be explored and discussed; 4. Offer hope to help them deal with their overwhelming emotions and disillusionment. I am glad that every one of you could make it. Let s get started. As you know, my name is I want to tell you why you are here and what we will be doing in these meetings. Some of you know each other while others do not. One thing that everyone has in common is being dependent on alcohol or drugs. This is going to be a time to get to know each other, learn about the problems each one is facing, and find new ways to deal with them. At times, we will talk about issues which may be sensitive such as feeling lonely, depressed, problems at home, etc. Here you will discover that you are not alone in these feelings and when you start sharing them, you will definitely find them less painful. Members here will help you minimize your pain. The introduction is the client s first step towards self-disclosure. The client can be in a state of panic and can be very anxious. To get over this initial barrier, one of the following methods may be followed for introduction: 1. The group can be divided into pairs and each client asked to introduce themselves to their partner. After this initial contact, the pairs form a single group and introduce the person they had met initially. (This helps the clients to redirect focus from themselves.) 2. Request members who have been part of the group for some time to introduce themselves first, thereby setting a role-model for the newcomers. 280 HANDOUT

303 Module 7 Submodule 1 Group therapy Formative stage The first meeting The first stage Therapeutic benefits Reduced anxiety Clients establish relationships, reduce loneliness and isolation Middle stage: Developmental stage Therapeutic tasks Handle defenses Motivate Recognize and identify feelings Therapeutic benefits Open sharing and ventilation of feelings Defensiveness handled by group members Dependence on the counsellor replaced by dependence on other members Third stage: Action stage Therapeutic tasks Consciously gets ready to bring the group to the stage of completion Focus on relapse prevention and recovery plans Therapeutic benefits Complicated issues are openly discussed and conflicts resolved Motivation to continue with sobriety becomes a priority Members realize the importance of independence and interdependence Fourth stage: Resolution stage Provide reassurance Encourage members to make frequent visits Fig. 7.2 Flow chart showing the stages of group therapy Following this, spell out the basic guidelines for the group. Now follows the next substage: the first stage. (b) The first stage This is when the counsellor encourages members to relate to the group by repeatedly using I messages, and descriptive rather than judgemental statements. Members are encouraged to talk about their expectations, what they want to achieve during their stay at the centre, following which they start sharing their addiction-related damage. All these experiences reduce anxiety and enable clients to establish relationships, and reduce their feelings of loneliness and isolation. Briefly, the therapeutic benefits of this stage are: Reduced anxiety HANDOUT 281

304 Module 7 Submodule 1 Goup therapy Clients establish relationships Loneliness and isolation are reduced 2. The middle stage: Developmental stage This stage is central to group therapy. Initially, the counsellor will have to actively facilitate sharing, with a clear focus on specific issues. The most important therapeutic task in the middle phase is the handling of defenses. Defenses will be up, and nurturing intervention in the form of support from the counsellor and the group is necessary to break the pattern. The predominant form of defense is denial. There are at least two levels of denial in a client: 1. Denial of the magnitude of the drinking/drug-taking problem. Once the initial denial has been overcome, the second is encountered, which is 2. Denial of the need to change. Both these forms of denial can be handled in group therapy. A general approach to handle denial is direct confrontation, which will work only if the client is well integrated into the group and has made a strong emotional investment in the process. Confrontation, if used, should be descriptive, focusing on what one has observed in a person; the emphasis should be on specific facts and generalized comments should not be passed. This approach is most useful when voiced with concern and accompanied by examples. The other therapeutic task of group therapy during the middle phase is motivation. Motivation is a key issue throughout the process and must be built up progressively. Once the initial emotional rapport and security are established, clients can be motivated by focusing on the damage, so as to give the client an insight on the need for change. Once the need to change is felt, motivation can be strengthened by focusing on the positive changes each individual has achieved. The next task for the counsellor is to help clients recognize and identify feelings, and make them comfortable with their negative and positive feelings. Help them understand that addiction is a disease, and encourage them to express their feelings of guilt, shame and hurt. The more common negative emotional states such as guilt, resentment, frustration, poor tolerance, shame, fear and anxiety are also dealt with. The counsellor s main task lies in being alert to changes in the pace within the group. The counsellor should be adept at making significant interventions if members 282 HANDOUT

305 Module 7 Submodule 1 Group therapy lose focus. They should help the members focus on issues, bring conflicts to the forefront and deal with them appropriately. As the group progresses, the members slowly take responsibility for decision-making. The counsellor makes conscious efforts towards this end by refusing to answer questions and encourages group participation regarding views expressed and decisions made. The group thus learns to look for resources and directions from within itself. The group s attitude turns into one of support and understanding for each other. This is eventually followed by a state of encouragement, appreciation, closeness and intimacy. Briefly, the therapeutic benefits of this stage are: Open sharing and ventilation of feelings Defensiveness is handled within the group itself by group members Dependence on the counsellor is replaced by dependence on other members 3. The third stage: Action stage The stage is now set for bringing in the most productive and satisfying phase of the process. Clients find it comfortable to express all their feelings and take responsibility for what they wish to achieve in the group. Opposing viewpoints are no longer threatening and conflicts are resolved constructively. Participation is at its best. Significant issues are discussed, feedback is received well and tasks get done at a rapid pace. The counsellor s intervention helps focus on emerging issues and provides useful inputs to handle complex issues. The group may revisit the same problem areas as in the previous stage, but these are now viewed from a different perspective. The counsellor continues to stay tuned to the mood of the group, guarding against stagnation on any issue. During this stage, the counsellor gets consciously ready to bring the group to the stage of completion. Sometimes groups fail to progress, especially when conflicts are seen as negative factors. In such a case, the counsellor s task will be to stay with the group during the second stage, work through conflicts and help them reach a stage where members realize their dependence as well as their independence. They are able to see their similarities and yet have differences; disagreeing at times but still being comfortable with each other. Briefly, the therapeutic benefits of this stage are: Complicated issues are openly discussed and conflicts resolved Motivation to continue with sobriety becomes a priority Members realize the importance of independence and interdependence HANDOUT 283

306 Module 7 Submodule 1 Goup therapy 4. The fourth stage: Resolution stage When the group draws closer to completion or when a few members prepare to leave the group, the situation may be anxiety-provoking for all. The counsellor reassures all the members and encourages those leaving the group to make frequent visits to the centre. 284 HANDOUT

307 Module 7 Module 7 Submodule 2 Family and marital counselling for patients with HIV/AIDS Handout Submodule 2: Family and marital counselling for patients with HIV/AIDS Session objectives At the end of the session, trainees will be able to: Identify the vulnerability of the family system to breakdown due to one or more family members being diagnosed with HIV/AIDS Identify the issues to be addressed during family counselling sessions and focus on the here-and-now to open up communication channels between family members Enable family members to solve the problems of the family as a unit Empathize with and understand the problems of HIV-infected client(s) within the family system, and facilitate the process of solving the crisis Bring about behaviour change in the family s perceptions and dynamics through roleplay Conduct couple counselling sessions Encourage family members to modify their ways of living and improve communications for enhancing familial support DEFINITION Family and marital counselling can be defined as a systematic effort to produce beneficial changes in a marital or family unit by introducing changes in the patterns of interaction between members of the family/partners. Its aim is the establishment of more satisfying ways of living for the entire family and for individual members. AIM OF MARITAL COUNSELLING Marital or couples therapy involves both the partners in resolving problematic (emotional or sexual) transactional patterns between the couple. AIM OF FAMILY COUNSELLING Family counselling involves all the family members in resolving problematic relationships (emotional or sexual), and facilitates communication between them. Therefore, Family therapy enables each member to accept their position in the changed scenario, facilitating the process of solving the crisis Family therapy attempts to alter situation-specific maladaptive patterns/ HANDOUT 285

308 Module 7 Submodule 2 Family and marital counselling for patients with HIV/AIDS interactions among family members and to improve interactions within the family as a whole The goal is to develop positive feelings and adjustment among the family members FAMILY AS A STRUCTURE AND SYSTEM Family structure It is important to understand family structure, its systemic patterns, and role expectations from members The family structure has an invisible set of functional demands that organizes the ways in which members interact A family is a system that operates through transactional patterns, i.e. how, when and with whom people relate Stress and disequilibria Stress and disequilibria occur in the family when it is confronted by Stressful contact with extrafamilial forces, namely, displacement of anger due to stress at work on any other member of the family Stress due to economic strain/loss of job Stress due to transitional life events in the family, e.g. birth of a child or death of a member Stress due to idiosyncratic patterns, e.g. a family with a challenged child, a person with HIV/AIDS or one with psychological problems HIV/AIDS AND ROLE OF THE FAMILY HIV/AIDS is a condition that continues to generate fear, misunderstanding, misinformation and discrimination Families that are primary caregivers are PLHA and face discrimination PLHA are shunned and isolated, forced out of their jobs or homes, refused medical and nursing treatment, and stripped of their human and civic rights and dignity Families suffer indignities too and these are inflicted even in health-care institutions by health-care professionals What issues does a family have to deal with? Stigma, isolation, discrimination Fear of contracting HIV and dying from the disease Information on facts and myths Cultural influence on sexual practices, preferences and behaviour, the number and type of sexual partners, and the use of birth control Cloak of silence due to taboos related to sexual practices and illicit drug use, 286 HANDOUT

309 Module 7 Submodule 2 Family and marital counselling for patients with HIV/AIDS which are associated with embarrassment, shame, guilt and rejection The betrayal of trust by a partner Voluntary disclosure of HIV-positive status to the family/partner FAMILY COUNSELLING Process involved in family counselling Initial contact with counsellor: Initiated by family member or through referrals First interview: Rapport, ice-breaking Family functioning evaluated in the here and now while adopting an existential approach. The focus should remain on current issues in the clients and their families lives Less emphasis on diagnosis of HIV/AIDS Establishing ground rules: The counsellor should avoid getting trapped in situations wherein confidential information is given by any one of the family members. The counsellor should also not be prejudiced by information given by one family member about the other Focus to be shifted from the individual to the family Restructure the family system The blame game should be discouraged and prevented as far as possible. Family counselling essentially uses the basic stages of counselling as 1. Rapport-building 2. Assessment of the problem(s) 3. Analysis of the problem(s) 4. Planning and initiating steps 5. Implementation 6. Termination and follow-up Role of the counsellor in family counselling The counsellor and co-therapist form an integral part of family counselling They facilitate identification and definition of the problem The counsellor has to involve all concerned family members and significant others in the therapeutic process The counsellor is the facilitator and provides support to the family The counsellor should avoid the following Condescending attitude and negative opinions towards PLHA Inhibitions and personal prejudices (isolating/avoiding PLHA) Inadequate exposure and experience with PLHA (inability to handle cases) HANDOUT 287

310 Module 7 Submodule 2 Family and marital counselling for patients with HIV/AIDS Unwillingness to approach the PLHA and family in a nonjudgemental, caring and supportive manner Inadequate knowledge of sexual practices, preference and behaviours Avoiding discussion on risky sexual behaviours Care for caregivers and the family The family needs ongoing support and care, since caring for the sick and dying is very stressful There is a need for adequate information/education, supervision, counselling and other support services for the family Caregiver burn-out needs to be handled Techniques used in family counselling Role-play: Re-enactment Homework: Noting behavioural patterns in the family Skills training/facilitation of interpersonal communication Cognitive restructuring: This involves recognizing and changing unclear or incorrect thoughts with clear and correct thoughts, which will help the client adjust to the situation Group therapy: Learning from each other s experience Behaviour counselling MARITAL COUNSELLING This involves dyadic partners with unresolved issues. The counsellor: Identifies appropriate counselling strategies suitable for each case Establishes a rapport and develops a trusting relationship with the family Motivates the couple for changes in attitudes Assists in identifying problem behaviour Facilitates conflict resolution Issues related to marital counselling Feeling of betrayal Lack of trust Anger, bitterness (Why should I take care of them after they have done this to me/us?) Sexual empowerment Involvement of children Dealing with the extended family Negotiating condom use 288 HANDOUT

311 Skills needed for marital counselling Module 7 Submodule 2 Family and marital counselling for patients with HIV/AIDS Skills to be mastered by the counsellor are: Communication and interpersonal skills Problem-solving skills The ability to help clients be assertive and take decisions Appropriate conflict resolution skills Skills for coping with stress/emotions Marital counselling techniques Role-play Cognitive restructuring Enhancing understanding of emotional needs Psycho-education, or providing clients with information on issues relating to illness, treatment and rehabilitation Sex education/information Group therapeutic programme (if feasible) Marriage encounter groups Sex therapy OTHER BENEFICIAL COUNSELLING SESSIONS Adolescent sex education Premarital counselling Street plays/puppet shows Psychodrama Self-help groups HIV-positive anonymous groups Support groups SOCIOECONOMIC ISSUES OF CONCERN The counsellor has to address issues of Financial position of the PLHA Developing and providing an emotional support system Help in making wills and in legal/financial matters Developing and providing information on networks for social support system Income and assets of the client Medication and costs involved HANDOUT 289

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313 Module 7 Module 7 Submodule 3 Counselling for sexual assault Handout Submodule 3: Counselling for sexual assault Session objectives At the end of the session, trainees will be able to: Discuss under what circumstances VCT workers may come in contact with survivors of sexual assault Discuss what constitutes sexual assault and the effect of sexual assault on the victim Discuss the requirements for the care of persons who have been sexually assaulted Outline the steps to be undertaken once a sexual assault has been disclosed WHAT CONSTITUTES SEXUAL ASSAULT? Where threat, force or coercion has been used in order to have the victim perform sexual acts, either with the perpetrator or with a third person Can include assault, obstruction, exploitation or molestation without physical harm or penetration Examples include rape, attempted rape, oral or anal intercourse, or insertion of objects into genital openings. WHAT ARE THE EFFECTS OF SEXUAL VIOLENCE? Sexual assault is often meant to harm, control or humiliate, thus violating a person s innermost physical and mental integrity. The client may feel powerless and fear retribution and lack of support from the family and society. The physical consequences of sexual abuse could include bruises, knife wounds, pelvic pain, headache, backache, STI and gynaecological complaints. The client may experience post-traumatic stress disorder, develop emotional detachment, sleep disturbances, experience flashbacks and replay the assault in their minds. Other psychological reactions include depression, suicidal behaviour, anxiety, loss of selfesteem, loss of faith and fear of intimacy. REPORTING OF SEXUAL ASSAULT Only a small proportion of assaults are formally reported. Most survivors do not report assault because of: Shame and fear of social stigma Fear of reprisal or ostracism from the family or community Possible detention and trial HANDOUT 291

314 Module 7 Submodule 3 Counselling for sexual assault Further attacks by the perpetrator The perpetrator being in a position of authority Inability to speak the local language Assault of men, boys or children are seldom reported CLIENT PRESENTATION TO VCT SERVICES Highly emotional Anxious Depressed Noncommunicative or in shock KEY AREAS OF RESPONSE Protection: Of human rights, ensuring physical safety and relocation of the client, if necessary Medical: Prevent further suffering, offer testing and health briefing Psychological: Culturally appropriate counselling, referral to other support networks and agencies DEALING WITH DISCLOSURE OF SEXUAL ASSAULT Step one: Protecting the rights of the individual Provide emotional support Refer the victim to sexual assault services (where available and client consents to referral) Ensure same gender health-care worker Ensure that the person s privacy and confidentiality are protected Practise active listening Assess the need for immediate medical assistance Ensure the future safety of the person; this may involve arranging alternative housing Ascertain whether legal action will be taken. Explain the procedures involved Always be guided by the best interests of the person If the assault is not to be reported, assess the need for counselling and referral to other support services Respect the person s wishes under ALL circumstances Step two: Contacting the police or other authorities Advise the client on reporting to the police and on the requirements for legal procedures Complete the necessary documentation 292 HANDOUT

315 Step three: Medical assistance Immediate attention to injuries Module 7 Submodule 3 Counselling for sexual assault Injuries sustained during the attack are treated by appropriate medical services If consent has been given for a forensic interview and medical examination, explain the procedures involved Forensic interview Gain informed consent from the client Ensure the client s comfort, privacy and confidentiality Document the details elicited during the interview Assess the risk of pregnancy, and contracting HIV, STIs and other infections Medical examination Assist in conducting a medical examination Collect forensic evidence Test for HIV, STI and pregnancy (where consent has been given) Ensure post-exposure treatments according to local protocols for HIV, STI and post-coital contraception Step four: Referral Community services: Clothing, shelter, other NGOs, etc. Counselling services: By trained mental health professionals Services specifically for children: May be offered by paediatric hospitals, etc. Legal services: To assist with legal costs, other support during legal proceedings Step five: Follow-up Counselling services Follow-up is important since the client is in need of reassurance and requires repeated inputs to develop coping skills Prepare information, education and communication (IEC) material for the client to take home Ongoing suicide risk assessment should be done Follow-up testing should be performed after the window period COUNSELLING SURVIVORS OF SEXUAL ASSAULT General principles Counsellors work as part of a team The survivor should not be pressurized to receive counselling Counsellors should sincerely practise active listening skills HANDOUT 293

316 Module 7 Submodule 3 Counselling for sexual assault Immediate intervention can help minimize the severity of long-term psychological trauma Counselling objectives Help clients develop self-confidence and take control of their lives Overcome feelings of guilt or responsibility for the attack Help clients understand and articulate feelings of anger Help establish a link between the client and community services, and integrate them back into community activities Support the client in resolving family and community disputes (where appropriate) Most survivors of sexual assault can regain their psychological health through emotional and social support, and psychological counselling. 294 HANDOUT

317 Module 7 Module 7 Submodule 4 Crisis intervention and problem-solving counselling for patiens with HIV/AIDS Handout Submodule 4: Crisis intervention and problem-solving counselling for patients with HIV/AIDS Session objectives At the end of the session, trainees will be able to: Identify the components and features of a crisis in the lives of patients with HIV/AIDS Equip themselves with the knowledge and skills for coping with crises Get acquainted with the methodology and techniques of problem-solving WHAT IS A CRISIS? Individuals face a crisis situation after discovering their HIV-positive status because they expect instability and a threat to life, and visualize health problems, physical impairment, social rejection and changing patterns of living in the future. Persons feel that their coping resources are under great strain; thus they are often blocked by unproductive and repetitive patterns of thinking, live in a state of heightened emotions, and are unable to view dispassionately the range of options available for coping. Generally speaking A crisis is a stressor or life challenge that requires an individual to adjust and adapt to an unpredicted situation or event. It is an acute disorganization or disruption in the functioning of an individual due to external or internal stress. In a crisis, a person experiences severe threat to their sense of emotional stability. PHASES OF A CRISIS Phase I: Arousal The knowledge of HIV infection causes intense emotional arousal. Initially, PLHA may try to review the problems they face. However, due to the gravity of the crisis, which results in multifaceted repercussions in the personal, occupational, social and economic areas, they may experience acute stress. Such an intense situation may impair the individual s ability to deal with such a crisis in an adaptive manner. They fail to solve the problems since they are too unfamiliar, too great, too many, and coping skills are limited and support inadequate. HANDOUT 295

318 Module 7 Submodule 4 Crisis intervention and problem-solving counselling for patients with HIV/AIDS Phase II: Disorganization An inability to resolve issues arising from a crisis situation leads to increased emotional arousal so that the individual feels distressed, helpless, hopeless, insecure and incapacitated. They feel they are incapable of overcoming the crisis situation and resolve the problems faced. Confusion occurs and symptoms related to the stress reaction might impair physical, emotional, social and behavioural functioning. Coping is further impaired, and stress compounded by poor sleep patterns, restlessness and a feeling of insecurity. Phase III: Frantic emergency steps taken to cope In a crisis situation, the ability to think rationally is masked by denial, self-defeating ideas, impaired problem-solving, inability to take adaptable decisions and some misconceptions. The individual makes frantic efforts to overcome the crisis situation but the steps taken are usually self-limiting and inappropriate for crisis resolution. Phase IV: Failure to solve problems Continuous efforts to solve the problem fail, leading to further exhaustion. Due to the inappropriate and unrealistic steps taken to deal with the crisis, the problems get magnified and the situation gets more complicated. The individual is unable to utilize the services available, namely, for treatment of HIV infection, care and support. The measures taken are usually limited and the individual runs from pillar to post without appropriate resolution of the problems faced. Thus, a vicious downward spiral into despair develops. ESSENTIAL FEATURES OF A CRISIS Personal attempts at solving the problem fail There seems to be no satisfactory solution to the problem The individual feels a sense of helplessness and loss of control The emotional states manifested are: panic, marked anxiety confusion and agitation depression/suicidal ideation anger, destructiveness more rarely, psychosis Other features of a crisis Generally self-limiting in nature Often resolves within a period of one to four weeks The client may desire to be helped by others; they are amenable to outside intervention as they know that coping without support is difficult 296 HANDOUT

319 OUTCOME OF A CRISIS The outcome of a crisis depends on Module 7 Submodule 4 Crisis intervention and problem-solving counselling for patiens with HIV/AIDS The coping abilities of an individual The nature of the problem(s) Social, cultural, or environmental influences Matter of chance, random happenings CRISIS COUNSELLING Principles of crisis counselling Counselling should: Be brief Be directive; it requires the therapist to play an active and direct role Deal with the individual, their family and social network Focus on the client s present problems Be reality-oriented, should enable the client to have a clear cognitive perception of the situation Help the client develop more adaptive mechanisms for coping with future problems and crises Stages of crisis counselling Stage 1: Delineating and focusing on the problem Counselling micro-skills should be used for understanding the problem from the client s perspective. Build a rapport: Offer support, respect and empathy; stay calm; speak in a friendly and reassuring tone Identify the stressor/crisis/trauma: Go over the events of the previous few days with the client; check for precipitating factors If there is no identifiable crisis, review the client s life-changes/events, history or look for other contributory factors Assess what demands the person faces and what practical steps she/he is required to take immediately Assess the mental state of the client with a view to evaluating whether they are capable of carrying out the practical steps called for Stage 2: Evaluation The following are evaluated: Demographic data Psychosocial and medical history Social situation, threats and supports HANDOUT 297

320 Module 7 Submodule 4 Crisis intervention and problem-solving counselling for patients with HIV/AIDS Psychological functioning prior to the onset of the crisis Presence of depression, substance use, sleep disturbance, anxiety, suicidal ideation/acts Pre-crisis adjustment/coping ability Stage 3: Crisis intervention This stage will depend on whether the person can assume responsibility and is able to carry out the practical steps required. The procedure to lower the level of distress and restore the person to a normal and effective state in which they can cope and take responsibility for the situation involve the following phases: 1. Intensive care: For those clients treated as not competent (e.g. victims of rape, sexual abuse) 2. Contracting: Responsibility is transferred back to client. 1. Intensive care (if the client is not competent) involves the following: Relieve the client of the responsibility Organize immediate take-over by children, family members, employers, etc. to deal with house, accommodation, food, etc. Remove the patient from the stressful environment Lower the arousal distress allow emotional ventilation display psychological support use medication for a short while, if required Encourage normal communication Show warmth and concern, and encourage hope 2. Contracting (if the client is competent): Responsibility is transferred back to client if they are competent. Clearly state the problem Set time limits Include others in the treatment programme Transfer responsibility back to the client Specify the client s responsibilities Stage 4: Intervening Listening Utilizing interpersonal resources Utilizing institutional resources Advocacy Confrontation 298 HANDOUT

321 Giving information Exploring other coping mechanisms Problem-solving Behavioural task assignments Module 7 Submodule 4 Crisis intervention and problem-solving counselling for patiens with HIV/AIDS Stage 5: Termination Prepare the client for termination Manage the problems of premature termination Stage 6: Follow-up For evaluative, educative and clinical purposes PROBLEM-SOLVING COUNSELLING What is problem-solving? Problem-solving aims at aiding people make appropriate decisions by generating options and by helping them learn useful self-help skills. Usually, problem-solving techniques focus on the presenting needs of clients, which require brief intervention. Clarifying the nature of the problem Encouraging and assisting in generating options Helping the client to critically evaluate the options Helping the client to choose the best option Developing an action plan Developing skills and strategies Implementing the plans Carrying out a review When is problem-solving used? It is commonly used to help clients: Understand the nature of the illness Think of the impact of the disease on daily living As a part of crisis intervention Acquire or strengthen personal skills for crisis management to prevent crises Change behaviour to protect themselves and others Utility of problem-solving Based on common sense, it requires minimal training to impart this skill Clients learn skills in one context which they can apply to other contexts Clients develop greater self-efficacy and self-esteem If things do not work out, clients generate more options and analyse why the HANDOUT 299

322 Module 7 Submodule 4 Crisis intervention and problem-solving counselling for patients with HIV/AIDS original plan did not work Clients accept more responsibility for their own choices, behaviour and outcomes What problem-solving is not Telling clients what their options are Telling them about the advantages and disadvantages of the chosen options Choosing the option for clients Directing clients regarding what they must do Expecting clients to have the skills and confidence needed to put their plan into action Making decisions for the client Problem-solving empowers the client Helps the client Identify the problem(s) appropriately (in terms of a realistic solution) Recognize what the problem(s) mean to the client, and how they will be affected Assess the details of the duration and effects of the problem Prioritize which problem is to be dealt with first Analyse the problem in order to reduce it to manageable proportions Techniques of problem-solving Brainstorming Generate a list of possible solutions to the problem(s) Identify alternative solutions or new methods of coping with the problem(s) Suggest additional methods of coping not considered by the client (lateral thinking) Do not review the alternatives at this stage, just list them, however absurd they may seem Cognitive rehearsal Allow the client to think through each alternative, and generate a list of pros and cons for each Enable the client to think of the practical implications of each alternative Choose the most likely solution Let the client chose among the alternatives Remind the client of their strengths/weaknesses so that they will understand more clearly which alternative is more likely to succeed in their case 300 HANDOUT

323 Behavioural rehearsal Module 7 Submodule 4 Crisis intervention and problem-solving counselling for patiens with HIV/AIDS Define the behavioural steps required to carry out the plan Help the client break down the plan into small, manageable bits Rehearse the steps involved in the plan (role-play) Sequential implementation Carry out the steps in a pre-determined sequence Negotiate a behavioural contract with the client to follow the specified sequence Review consequences Check the consequences to ensure Whether the choice of alternatives was suitable Whether the action required was implemented correctly Whether a change of plan or more preparation is required Whether the plan was realistic Failure of plans However, even good plans fail sometimes because of: The psychological/behavioural responses of others Unexpected circumstances that could not have been predicted and planned for, but You are more likely to succeed if you have a plan. You are more likely to feel in control if you have a plan. Counsellor s role in counselling for problem-solving Demonstrate concern and support, and explore all aspects of the problem Bring out in the open the client s feelings and fears Discuss the actions taken so far Discuss personal and other resources available that are needed for problemsolving By realistic reassurances, show how normal and predictable the client s reactions are Explain accurately the protective actions that the client would be required to take Help the client establish a plan of action The counsellor should not take responsibility for the client s decision-making as: This results in dependency of the client on the counsellor Create feelings of inadequacy in the client This projects blame onto the counsellor if the desired outcome is not achieved. HANDOUT 301

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325 Module 7 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Handout Submodule 5: Universal safety precautions and post-exposure prophylaxis Session objectives At the end of the session, trainees will be able to: Recognize and assess the significance of occupational exposure to HIV-contaminated fluid Undertake a comprehensive approach to the care of the exposed health-care worker or patient Administer appropriate and immediate first aid Understand the principles of how to use antiretroviral drugs if indicated. Document the incident appropriately. PRINCIPLES OF INFECTION CONTROL AND UNIVERSAL SAFETY PRECAUTIONS The broad principles include Infection control measures: Each institution should establish an appropriate infection control policy (ICP) and programme. A mechanism should be set up for planning, implementing and monitoring the evaluations of the ICP and programmes. Hand-washing is the simplest and most cost-effective measure, and must be encouraged. Disinfectants should be prepared and used according to the guidelines. A patient should be admitted to the hospital only when required and discharged as early as possible to reduce the risk of infection. The health-care facility should be kept clean and void of virulent organisms by proper housekeeping, proper waste disposal, water treatment, disinfection and sterilization of equipment to reduce the risk of infection among patients, healthcare personnel (HCP) and the community. Efforts should be made by hospitals to reduce the generation of waste by selecting a mixture of disposable and re-usable material depending on the situation. The waste should be surveyed to evaluate both the type and quantity of waste generated, and disposed of by segregating and treating at source to disinfect or decontaminate as per the Biomedical Handling and Management Rules notified by the Ministry of Environment and Forests. HANDOUT 303

326 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Health-care personnel HCP are persons (emloyee, student, contractor, attending clinician, public safety worker or volunteer) whose activities involve contact with patients, blood or other body fluids in health-care, laboratory or public-safety settings. Prior to HIV/AIDS. Prior to the AIDS epidemic, hospital ICPs often included source-specific recommendations: Enteric precautions signs were posted on the doors of patients with infectious gastroenteritis (Salmonella, Shigella, etc.) Blood and body fluid precautions signs were posted on the doors of patients with infections known to spread through body fluids, e.g. hepatitis B Exposure This is described as an incident that might place the HCP at risk for HIV or other infections. It includes Percutaneous injury, due to needlesticks or a sharp object Contact of infectious fluids with nonintact skin/mucosa as in chapping, abrasion, dermatitis WHAT ARE UNIVERSAL PRECAUTIONS? Universal precautions or universal work precautions (UWP) are simple standards of infection control practices and certain protecting measures to be used by health workers while taking care of all patients, at all times, while providing professional services to reduce the risk of transmission of HIV/HBV infection through blood and body fluids and tissues. Universal precautions include 1. Hand-washing with soap and water before and after all procedures 2. Use of protective barriers such as gloves, gowns, aprons, masks and goggles to avoid direct contact with blood and other body fluids, and airborne organisms 3. Safe disposal of waste contaminated with blood or body fluids 4. Safe handling and disposal of needles and sharp instruments. DO NOT recap or manipulate needle in any way 5. Proper disinfection of instruments and other contaminated equipment 6. Proper handling of soiled linen 7. Adherence to correct hospital sterilization and disinfection protocols 8. Processing of all laboratory specimens as potentially infectious 9. Immunization against HBV 304 HANDOUT

327 Some specific precautions Safe disposal of waste contaminated with body fluids Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Solid waste that is contaminated with blood and body fluids, laboratory specimens or body tissues should all be placed in leak-proof containers and incinerated. Liquid pathological waste should be treated with a chemical disinfectant. The solution should then be treated with a reagent to neutralize it. This can be then flushed into the sewer system Safe handling and disposal of needles and sharp instruments Disposable items such as gloves, syringes, IV, bottles, catheters, etc. have to be shredded, cut or mutilated. This ensures that they are not recycled/re-used. For instance, the fingers of the gloves should be cut, IV bottles punctured and the same done for other disposable items. Avoid recapping needles Recapping of needles should be avoided at all costs. Hospital waste disposal Bins with lids lined with polythene bags or with a bucket in the inner chamber should be used. They should also be labelled with the biohazard symbol and, if required, the type of waste they have been used for specified. Polythene bags should be sealed/tied at the top whenever waste is being transported within or outside the hospital. Personnel handling infectious waste should be provided with suitable protective wear and should be properly trained. Sterilization and disinfection Proper sterilization ensures protection against HIV, HBV and HCV. This forms an essential part of good medicine. Instruments should be soaked in disinfectant solution for 30 minutes, cleaned and then sent for sterilization. All forms of sterilization will destroy HIV. Cleaning Detergents and hot water are adequate for the routine cleaning of floors, beds, toilets, walls, and rubber draw sheets. In case of spillage, heavy-duty rubber gloves should be worn and as much body fluid removed as possible. The area of spillage should be covered with a paper towel/newspaper and a chlorine-based disinfectant poured in and around the spill, and left in place for 20 minutes. Remove the paper with a gloved hand and discard with infectious waste for incineration. HANDOUT 305

328 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis All soiled linen should be handled as little as possible, bagged at the point of collection and not sorted or rinsed in patient-care areas. If possible, linen with large amounts of body fluid should be transported in leak-proof bags. If leak-proof bags are not available, the linen should be folded with the soiled parts inside and handled carefully, wearing gloves. How do UWP help? HIV is very fragile outside the body Prevent occurrence of accidental exposure and transmission of infection Control surface contamination Ensure safe disposal of contaminated waste Body fluids to which universal precautions apply Blood Vaginal secretions Semen Cerebrospinal fluid Synovial fluid Pleural fluid Peritoneal fluid Amniotic fluid Pericardial fluid Other body fluids containing blood Body fluids to which universal precautions DO NOT apply Tears Sputum Sweat Urine Vomitus Nasal secretions The risk of transmission is extremely low or negligible unless these contain visible blood. Magnitude of risk Depends on: Prevalence of infection in the population Frequency of exposure 306 HANDOUT

329 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Concentration of the virus Depth of the wound Susceptibility and viability of HIV Desiccation Heat ph Steam/pressure Chemicals Survival in live/dead tissues Universal precautions Assume ALL body fluids from all persons are potentially infectious Hand-washing (soap-water-friction) is the single most effective infection control method known Fig. 7.3 Steps of effective hand-washing Barrier precautions Dressings Gloves Masks Protective glasses or eye shields Plastic aprons Shoe covers Cap HANDOUT 307

330 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Handling syringes/needles Dos Don ts Pass syringes/needles in a tray, Never pass syringe or needle cut with needle cutter directly to next person Put needle and syringes in 2% Do not bend/break used hypochlorite solution if needle needles with hands cutter is not available. Remove cap of needle near the Never test the fineness of needle-tips site of use before use with bare or gloved hand Pick up open needle from tray Never pick up an open needle by with a pair of forceps hand Destroy syringes by burning their Never dispose of syringes/needles tips if cutter not available by breaking with hammer/stone Selection of protective barriers Type of exposure Protective barrier Examples Low-risk Contact with skin, no visible blood Medium-risk Probable contact with blood, splashing unlikely High-risk Probable contact with blood splashing, uncontrolled bleeding Gloves helpful but not essential Gloves Gown and apron may be necessary Gloves Waterproof gown or Apron Eye wear Mask Injection, minor wound dressing Vaginal examination, handling of laboratory specimen, large open wound dressing, venepuncture, spills of blood Major surgical procedure, oral surgery, vaginal delivery Chemical disinfection Bleach is a good disinfectant Concentration prescribed by WHO is 10 g bleach in 1 L water (1% available chlorine) Household bleach contains 4% 5% available chlorine, should be used after diluting Minimum contact time recommended: 30 minutes 308 HANDOUT

331 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Cleaning and disinfection of commonly used items General use articles What to do Bath water Bed pans Bowls Floors Furniture, bed frames Mattresses/pillows Trolley tops Add antiseptic solution (e.g. Savlon) when necessary Wash with hot water and dry Disinfect with phenol after use by infected patients Autoclave/wash with hot water and keep dry Crockery, cutlery: wash with hot water and detergent Keep dry Vacuum clean No broom to be used Damp dust with detergent or with phenol or with a disinfectant solution such as 2% Lysol Cover with water impermeable cover Wash cover with detergent solution and dry Disinfect with phenol when necessary Wipe with warm water and detergent to remove dust and keep dry Thermometers Wash with warm water and detergent or keep in 70% alcohol for one minute and keep dry Standard bio-safety guidelines: 1 Wear gloves when handling infectious materials or where there is a possibility of exposure to blood or other body fluids. All laboratories that work with material that is potentially infected with HIV require a generous supply of good quality gloves Discard gloves whenever they are thought to have become contaminated or perforated, and wash your hands and put on new gloves Standard bio-safety guidelines: 2 Wash hands with soap and water immediately after any contamination and after work is finished. If gloves are worn, wash hands with soap and water after removing the gloves Never open blood sample containers without gloves In high-risk patients, double gloves must be used and disposed of suitably after use Standard bio-safety guidelines: 3 Routinely, single gloves are sufficient Change gloves after 1 hour, continuous wear may be detrimental The total time a glove can be used is three hours HANDOUT 309

332 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Category Category 1 Category 2 Category 3 Category 4 Category 5 Type of Waste Human anatomical wastes (human tissues, organs, body parts) Waste sharps (needles, syringes, scalpels, blades, instruments, glass, etc. that are capable of causing punctures and cuts. This includes both used and unused sharps) Soiled wastes (items contaminated with blood and body fluids including cotton, dressings, soiled plaster, linen, bedding, other materials contaminated with blood) Incineration ash (ash from incineration of any biomedical wastes) Segregation of waste at source Treatment and Disposable Option Incineration/deep burial Disinfection (chemical)/1/2 1 hour Autoclaving/microwaving and mutilation/ shredding Incineration/autoclaving/microwaving Disposal in municipal landfills Between patients, disinfect gloved hands with a suitable disinfectant, e.g. 1% NaOCl, Betadine (1% available iodine) or at least soap for a minimum of 30 seconds Wash hands thoroughly with soap before wearing gloves and after degloving Discard gloves at the least suspicion of a puncture Standard bio-safety guidelines: 4 Disposal and containment of contaminated wastes: Suitable container (puncture-proof and leak-proof) Located in the health office Sharps/nonsharps 310 HANDOUT

333 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis The Ministry of Environment and Forests has a classification which is notified in the Bio Medical Handling and Management Rules. Dressing of wounds Sterile instruments and material to be used Antiseptic lotion/creams Material/instruments used and removed to be disinfected Laundry This can be done either manually or mechanically Contaminated linen to be disinfected before laundry by: Chemical disinfectants/boiling/autoclaving at low pressure of steam Contaminated linen to be transported to the laundry in thick polythene bags If washing machine used, decontaminate with hot detergent in machine What about bites? Bites are potentially infectious IF the skin is broken and no intact barrier is present. There is no known risk of HIV transmission from human bites There is scant anecdotal evidence that transmission of hepatitis B may occur What about scratches? Scratches are potentially infectious IF the skin is broken and no intact barrier is present. AND there is observed introduction of body fluids or blood from another person into the wound OR there is blood or other body fluid visible on the hands/under the fingernails of the person inflicting the scratch HANDOUT 311

334 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Decontamination and washing of blankets Cotton/acrylic/synthetic blankets preferred to woollen blankets To be handled like linen Woollen blankets decontaminated by exposure to formaldehyde/autoclaving Drycleaning does not inactivate/kill HIV Decontamination of mattresses Cover all mattresses with waterproof synthetic material. Management of spills Cover with paper towel/blotting paper/newspaper Pour 1% sodium hypochlorite solution on and around the spill Keep it covered for 20 minutes Remove paper with gloved hand and discard in infectious waste for incineration Pregnant HCP Pregnant HCP are not known to be at greater risk of contracting HIV infection than HCP who are not pregnant. However, if an HCP develops HIV infection during pregnancy, the infant is at risk of infection from perinatal transmission. Because of this risk, pregnant HCP should be especially familiar with and strictly adhere to precautions to minimize the risk of HIV transmission. Universal precautions and deliveries All HCP who perform or assist in vaginal or caesarean deliveries should wear gloves and gowns when handling the placenta or the infant until the blood and amniotic fluid have been removed from the infant s skin, and should wear gloves during post-delivery care of the umbilical cord. Management guidelines: Needlestick injury (Mumbai District AIDS Control Society) Immediate measures How to report exposure in public health-care settings? Assessing need for PEP Testing and counselling Follow-up visits Glove tear or needlestick injuries during invasive procedures If a glove is torn, or a needlestick or other injury occurs, the glove should be removed and a new glove used as promptly as patient safety permits. The needle 312 HANDOUT

335 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis or instrument involved in the incident should also be removed from the sterile field. Saliva transmission during CPR Although saliva has not been implicated in HIV transmission, to minimize the need for emergency mouth-to-mouth resuscitation, mouthpieces, resuscitation bags, or other ventilation devices should be available for use in areas in which the need for resuscitation is predictable. POST-EXPOSURE PROPHYLAXIS (PEP) FOR HIV FOLLOWING OCCUPATIONAL EXPOSURE Mode of transmission Heterosexual 75% Infected blood and blood products 8% Injectable drug users (IDUs)/IV 7% Children born to HIV-infected mothers Infection by needlestick sharps injury in a hospital or any other health-care setting (largely undocumented) What is exposure? Any incident that may place HCP at risk of HIV infection. Percutaneous injury (e.g. needlestick/cut with sharp instrument) Contact of mucous membrane or nonintact skin (chapped, abraded or afflicted with dermatitis) Prolonged duration or contact with blood/body fluids Risk of infection after occupational exposure No risk on exposure to intact skin The risk of HIV transmission after a percutaneous exposure to HIV-infected blood is approximately 0.3% (1 in 300) and after mucous membrane exposure 0.09% (1 in 1000) HBV: Rate of HBV transmission ranges from 6% to 30% after a single needlestick exposure to an HBV-infected patient HCV: The incidence of acute HCV seroconversion averages 1.8% (from 0% to 7% per injury) What should be done after exposure? Immediately following exposure: Wash area with soap and water Eyes to be irrigated HANDOUT 313

336 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Pricked finger not to be reflexively put in mouth Do not panic Reporting of exposure Report to competent authority To be dealt as an emergency Start PEP drugs Decision of PEP made on: Degree of exposure to HIV HIV status of source Provide standard pre-test counselling focus on immediate concerns Why PEP at all? Rationale of PEP Information about primary HIV infection indicates that systemic infection does not occur immediately, leaving a brief period within a window of opportunity during which post-exposure antiretroviral (ARV) intervention may modify viral replication. Fig. 7.4 Algorithm to determine the HIV Status Code (HIV SC) 314 HANDOUT

337 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Fig. 7.5 Algorithm to determine the Exposure code (EC) EC HIV SC PEP Recommendation 1 1 PEP may not be warranted 1 2 Consider basic regimen (negligible risk) 2 1 Recommend basic regimen (most exposures are in this category) 2 2 Recommend expanded regimen 3 1 of 2 Recommend expanded regimen 2/3 Unknown If setting suggests a possible risk (epidemiological risk factors) and EC is 2 or 3, consider basic regimen Fig. 7.6 PEP Recommendations HANDOUT 315

338 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis PEP should be given to health-care personnel relatives looking after HIV-positive persons victims of sexual assault Is PEP recommended for all types of occupational exposure? No. All occupational exposure does not lead to HIV infection Before starting treatment, weigh the pros and cons of risk of infection and toxicity of drugs What about exposure to blood where the HIV status of the source is unknown? Follow-up of affected persons required depending on exposure risk and status code of the person Figs 7.3 and 7.4 show how to determine HIV status and exposure codes Drugs for PEP Basic regimen: Zidovudine 300 mg b.d. + Lamivudine 150 mg b.d. Expanded regimen: Zidovudine + lamivudine + Indinavir 800 mg t.d.s Or any other protease inhibitor Duration of PEP: 28 days Efficacy of ARV for PEP PEP provides definite prevention of infection Early initiation of PEP and small inoculum size are correlates of successful PEP Delaying initiation, shortening the duration or reducing the antiretroviral (ARV) dose of PEP individually or in combination decreases efficacy Zidovudine (NRTI) is the only agent shown to prevent HIV transmission in humans Failure of Zidovudine PEP to prevent HIV infection has been reported in at least 14 instances Duration of PEP Start as early as possible, preferably within 2 hours Continue for 4 weeks (28 days) PEP started after 72 hours is not recommended 316 HANDOUT

339 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis Common adverse effects of ARV Nausea, vomiting Headache Diarrhoea Myalgia Malaise, fatigue Abdominal pain Rash Should pregnant HCP take these drugs? Zidovudine: If taken in the second and third trimesters, it does not cause any serious side-effects in the mother and baby Little information is available on safety during the first trimester Refer to a physician Protocols to be followed Provide standard pre- and post-test counselling at Baseline test (at time of exposure) Repeat test (at 6 weeks) Second repeat test (after 3 months) Send the blood sample for HIV testing 1st sample (baseline): immediately after exposure 2nd sample: 6 weeks following exposure 3rd sample: 12 weeks following exposure Last sample: 6 months Follow-up period: Refrain from donating blood, semen, organ Abstain from sexual intercourse/use condom Do not breastfeed Recommendations for the management of potentially exposed HCP Hospitals should make available to their workers written protocols for prompt reporting, evaluation, counselling, treatment and follow-up of occupational exposures that may place HCP at risk of acquiring any blood-borne infection including HIV Exposure reporting should be made mandatory Clinicians responsible for providing care should be available all 24 hours PEP drugs should be available for timely administration HANDOUT 317

340 Module 7 Submodule 5 Universal safety precautions and post-exposure prophylaxis 318 HANDOUT

341 Module 7 Module 7 Submodule 6 Management of psychological distress in patients with HIV/AIDS Handout Submodule 6: Management of psychological distress in patients with HIV/AIDS Session objectives At the end of the session, trainees will be able to: Conceptualize the process of cognition and the thought process with respect to an HIV/AIDS-related status Learn how to use some specific cognitive behavioural strategies Learn how to teach clients the skills to cope with negative thoughts WHAT IS THE COGNITIVE BEHAVIOURAL APPROACH? Most PLHA report the presence of self-defeating ideas with symptoms of anxiety, uncertainty, distress, hopelessness, worthlessness and impending doom. These are due to thoughts/cognitions which occur following the knowledge that they are HIVinfected. The cognitive approach emphasizes the role of thought in our behaviour. Cognition represents the manner in which we interpret, analyse and use information. Our emotional reactions are an outcome of the information one acquires subsequent to HIV infection. The goal of cognitive behavioural management is to identify negative thoughts, and modify them into rational thinking. Counselling is directed primarily at modifying disturbing or maladaptive thoughts and related behavioural dysfunction. Thoughts positive/ negative Immediate effect Emotional Physiological Behavioural Long-term Emotional Physiological Behavioural Fig Rationale of the cognitive behavioural approach HANDOUT 319

342 Module 7 Submodule 6 Management of psychological distress in patients with HIV/AIDS STAGES OF COGNITIVE MANAGEMENT 1. Assessment 2. Identifying negative thoughts 3. Challenging negative thoughts 4. Substituting negative thoughts with positive ones Assessment The following issues are assessed: Issues related to HIV status whether symptomatic or asymptomatic stage and course of illness Issues related to the client s personality, and coping and adjustment abilities Issues related to the attitude and support of the family Issues related to the severity of distress due to HIV infection Severity of distress It is evaluated through the use of scales and questionnaire based on the following: Depressed mood Crying spells Marked wright loss Sleep disturbance Loss of appetite Low interest in everyday/pleasurable activities Constant feeling of loss of energy Feeling of worthlessness, guilt Feeling of hopelessness and helplessness Suicidal ideation Decreased ability to think/concentrate Impairment in functioning (social/personal/occupational) Identifying negative thoughts Ask the client to discuss a recent emotional experience to analyse negative thoughts Use imagery/role-play to help the client understand the situation Observe shifts in mood during the session Determine the meaning of an event for the client Ask the client to maintain a diary, and keep a daily record of negative thoughts in terms of actual events, emotions and automatic negative thoughts 320 HANDOUT

343 Module 7 Submodule 6 Management of psychological distress in patients with HIV/AIDS Table 7.1 Diary maintenance and daily record of negative thoughts Situation Negative thoughts Emotion Actual event leading to Record thoughts which preceded Specify emotions unpleasant experience emotions Rate degree of emotion Assess the belief the client holds for these automatic thoughts Challenging negative thoughts Explore alternate ways of perceiving the situation and alternative solutions. Examine what someone else would think about the situation. Is your judgement based on how you feel rather than on what you did? Are you forgetting relevant facts/overfocusing on irrelevant facts? Are you thinking in all-or-none terms? Are you underestimating what you can do to deal with the situation? Are you overestimating your responsibility/control over how things work out? Substituting negative thoughts with positive ones The following techniques are used to modify negative thoughts: Redefining Generating alternatives Examining the facts De-catastrophizing: Disputing negative thoughts Reattribution procedures: Training clients to recognize the way they think Thought-stopping Cognitive rehearsal Behavioural techniques used include: Relaxation procedures Cognitive restructuring Disputing techniques Activity scheduling Behavioural task assignment techniques Role-playing Social skills training Supportive techniques used include: Problem-solving Emotional catharsis and ventilation Environmental manipulation Externalization of interests HANDOUT 321

344 Module 7 Submodule 6 Management of psychological distress in patients with HIV/AIDS Creative arts therapy Spiritual therapies/developing a philosophy of life COGNITIVE RETRAINING FOR NEUROPSYCHOLOGICAL DEFICITS ASSOCIATED WITH HIV/AIDS Management of cognitive deficits Memory problems Use a diary, calendars and notebooks Use reminders, stick papers Make notes for the doctor, counsellor, phone calls, etc. Make lists of important things to be checked when leaving the house and for household-related activities For medication: use an alarm clock as a reminder Use a cassette tape recorder, cordless bell and noise-activated key chain Speech-related deficits Allow more time to collect your thoughts, and for conversations Do not hurry; give yourself permission to take time Keep talking; good conversation is good practice Use recorders Vision-related deficits Do not drive; drive with a companion Use verbal directions Realistically assess whether you are still able to drive at night Do not go for a walk alone Ensure occupational safety Problems in maintaining attention Decrease the overload of information Do one task at a time Break large complex tasks down into small steps Decrease distracters, e.g. television Talk/meet people one at a time 322 HANDOUT

345 Module 7 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS Handout Submodule 7: Suicide risk assessment and management for patients with HIV/AIDS Session objectives At the end of the session, trainees will be able to: Understand some of the reasons for suicide and various methods of suicide Conduct a suicide risk assessment Have knowledge of the referral sources for suicidal clients Understand counselling issues for suicidal clients Apply effective management strategies for counselling a suicidal client INTRODUCTION Definitions Suicide is the act of killing oneself. Parasuicide is a suicide attempt. Suicidal ideation is the thought of killing oneself. The act of suicide is a communication that implies that there is a problem which needs resolution. Death may be seen as a way out of difficult circumstances. Frequently, people who feel miserable and think of suicide will share that feeling and confide in someone. They are often amenable to intervention and eventually find alternative means to structure their lives, although this process may be interrupted by cries for help. However, the belief that people who threaten to kill themselves never do so is wrong! All suicide threats should be taken very seriously. Common myths People who think or plan to commit suicide keep their thoughts to themselves, and the suicide occurs without warning Those who talk about suicide will not do it People who talk about suicide are just attention seekers HANDOUT 323

346 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS Suicidal people have the intention of dying Talking openly about suicide may cause a suicidal person to end their life Suicidal acts reflect a disturbed mind or mental illness SUICIDE RISK IN HIV-POSITIVE PATIENTS There are two periods during which HIV-positive individuals are most likely to attempt suicide. The first is when the person is initially diagnosed; suicide may occur as an impulsive response to the emotional turmoil that follows. The second period of high risk occurs late in the course of the disease when the central nervous system complications of AIDS develop, the capacity to earn declines, and the feeling of being a burden on family members and carers arises. During the late stage of the disease, patients experience adjustment issues associated with the stage of the disease, impairment of thinking and the possible complications of underlying changes in brain chemistry. Other factors which may contribute to suicide risk are: A pre-existing mood disorder (depression, anxiety or mania) A current psychiatric disorder such as schizophrenia or bipolar disorder Presence of other psychosocial stressors, e.g. relationship breakdown Substance use or withdrawal Inadequate pre- and post-test counselling Inadequate support network Discomfort with sexuality and/or gender CLASSIFICATION OF SUICIDE METHODS (a) Violent methods: This is when the client uses or thinks of using violent means as a way of killing themselves, e.g. hanging, shooting, burning, planned accidents, jumping from heights, etc. (b) Nonviolent: When the client uses nonviolent methods such as drug overdose, poisoning, exhaust fumes, suffocation, etc. (c) Passive methods: Suicide can also occur in a passive form as patients may choose to die by refusing to accept treatment. This can be distressing for carers and raises many ethical considerations. While this may be considered an informed and reasonable decision on the part of the individual, it may also reflect an underlying masked mood, inappropriate guilt or a response to poor palliative care. SUICIDE RISK ASSESSMENT A good assessment interview is part of the therapy. It is often enough to change suicidal thoughts. In most cases, the client comes in during a crisis and requires urgent attention. They can be accompanied by a relative but the counsellor should first see them alone. This is because many parasuicidal clients feel powerless and 324 HANDOUT

347 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS are often unwilling to be frank and open about their problems in front of others who may be part of the problem. When a counsellor is dealing with a case of parasuicide, it is important to first have the client medically examined. Always check whether they have has taken anything poisonous before beginning counselling. Do not be too quick to sit down and counsel when in fact the client could have taken some poison and could collapse during the session. Suicide ideation or attempted suicide is closely related to feelings of hopelessness. It is important to determine the individual s thoughts about the future and his or her beliefs about improvement in the current circumstances. If the individual believes that a positive change is unlikely, the counsellor can try to restore hope by reassuring the individual that everything possible will be done to help and by teaching them the structured problem-solving method. The counsellor will also need to be on the lookout for other symptoms that may suggest the presence of clinical depression. Specialist referral may be necessary. Depression Some leading questions on depression: Why do you think of suicide now? (What the current difficulties/problems are) What are you doing about your problem? (How the client is currently coping) How did you deal with problems in the past? (Ask for examples) What can be the possible reason that those solutions do not work now? Who is affected by your problem? How does it affect you? How can you be helped? Who would you like should know/not know about your problem? What would help you to stay alive? What do you have to do to make this change(s) possible? What barrier(s) to change exist? What can facilitate the process of change? Whose help/assistance would you need? How do you care for yourself? What can possibly happen to make you change your mind? Assessing risk level The counsellor should explore and assess whether the risk of suicide is high or low. A detailed risk assessment summary is included at the end of this document. This tool can be completed by counsellors either when the client is present or while writing their records. Assessing the risk level is essential as it will determine the further steps the counsellor should take. HANDOUT 325

348 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS At-a-glance risk determination High-risk 1. Current suicidal thoughts 2. Client reports feeling of hopelessness 3. Use of maladaptive coping strategies 4. Multiple attempts; lethal means used 5. The attempt was made when others were not present 6. The client says they will try again 7. The client says they will not try again but cannot give a good reason as to what is now different 8. Declining health and limited treatment options Low-risk 1. Only one attempt. Less lethal means used 2. Client expresses some feelings of hope 3. Client displayed well-developed coping responses to past crises 4. The client gives a valid reason for not wanting to repeat the experience, e.g. the pain made them realize that death was not the answer 5. Single attempt, which was made impulsively 6. Someone else was informed immediately 7. Client indicates they have mixed feelings about suicide. Can provide a good reason why they may not commit suicide, e.g. against their religion, will upset the family 8. Client may express concern that they are burden but feel suicide would place a greater burden on others 9. Client feels they are a burden REFERRAL INDICATIONS Suppressed emotions, an already dead feeling, is the most dangerous sign. Often the client is frank enough about the intention to eventually kill themselves, but sometimes they deny this in order to be released from the VCT centre (VCTC). Some clients are in total denial or in anger. These clients need to be referred to a psychotherapist, clinical psychologist, psychiatrist, etc. if necessary. Other clients may need referral to specific helping agencies, e.g. legal aid, welfare organizations supporting unmarried mothers and single parents, etc. Many suicide attempts are made in the context of a family row. Parasuicide is more often connected with anger and perceived helplessness than with depression. The angry client must be challenged to think of new ways to vent their anger. If the clients claim that they never become angry, you know that anger seems so dangerous to them that they refuse to recognize it. There is no human being who never becomes angry. Dealing with denied anger is a different task and therefore an indication for referral. 326 HANDOUT

349 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS STEPS FOR THE MANAGEMENT OF SUICIDAL CLIENTS These are determined by whether the client is at the pre- or post-suicidal attempt stage, although these stages have some similarities. Always assess the risk in both stages. Guidelines for assessing and managing suicide 1. Pre-attempt stage Determine the severity of the problem and assess the need for hospitalization Negotiate for voluntary hospitalization or refer to the client s doctor Do not leave a suicidal person alone while arrangements are being made for referral Help develop alternative mechanisms for coping and decreasing stress Mobilize a support system for the client Initiate (verbally or in writing) a no-suicide contract to ensure the short-term safety of the client 2. Steps for high suicide-risk individuals Ensure appropriate supervision or hospitalization for the individual. Do not leave the individual alone for any length of time. Refer to a psychiatrist or mental health specialist Family and friends may be able to provide suitable supervision 3. Steps for low suicide-risk individuals (a) Ensure the client has access to suitable clinical care when required (e.g. crisis team, extended hours team, general practitioner, hospital, telephone support). Give the individual a list of contact numbers and provide explicit contingency plans if one or more of the contacts are unavailable. These are important considerations since the client may become suicidal again. (b) Remove the means of committing suicide, e.g. guns, pills, chemicals, car (take the keys), knives, rope, etc. If the individual requires medication, ensure he or she has access to only a very small amount. Encourage the client to take the medicine and ask a family member or friend to supervise. (c) Develop a suicide contract try to delay the individual s suicidal impulses. For example, make a contract with the individual in which they promise not to attempt suicide within an arranged (short) period of time. Also, provide other options for the individual to use at times when he or she is on the verge of attempting suicide (e.g. suggest that the individual calls someone reliable for help, such as yourself, a trusted family member or friend, a doctor, or a crisis hotline). (d) Restore hope in the client. Encourage the view that all problems can be solved. Identify, explore and validate the client s ability to cope with past crises or HANDOUT 327

350 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS difficulties. Recommend learning a structured problem-solving method as an important skill to the individual. (e) Environmental intervention may be required. Encourage the client s active participation in the current situation. Involve family members in caring for the individual. Encourage a supportive network away from the counsellor (e.g. family, friends, and agencies). Encourage the use of community resources (e.g. crisis hotlines, police, medical centres). Refer to services as appropriate. Help the individual resolve any immediate conflicts with others who are contributing to the problem. Help the individual structure time between therapy sessions, and ensure that sessions are frequent, regular and planned in advance. (f) Always conduct a follow-up assessment. Some special problems counsellors may encounter with clients 1. Individuals who refuse to talk An individual may refuse to discuss their previous suicide attempt or current thoughts or plans because: They may be afraid that they will be prevented from committing suicide They may be embarrassed or ashamed of having the suicidal thoughts or of their previous suicide attempt/s They may be afraid of being labelled mentally ill They may be afraid that they will be sent to a hospital They may doubt the confidentiality of the interview They may be oppositional or manipulative If it is felt that the individual is at high risk for self-harm and they will not accept help, it may be necessary to talk to a psychiatrist or general practitioner about the possibility of scheduling the individual under the Mental Health Act. With regard to other reasons for refusing to talk, the clinician can reassure the individual about their willingness to help and about the complete confidentiality of the interview. A nonjudgemental manner is extremely important. If the individual remains reluctant to talk, it will help to ensure that the individual knows how to contact a clinician at any time of the day in case the individual changes their mind. A follow-up letter to the individual reminding them of the offer of help may also be useful. 2. Individuals who make repeated suicide attempts These individuals usually feel lonely and isolated and may be trying to get attention. Alternatively, they may be threatening or attempting suicide for the purpose of being manipulative. Others may simply lack coping abilities. However, regardless of the individual s reason for attempting suicide, all attempts need to be taken seriously. It 328 HANDOUT

351 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS is important for counsellors to remember that such individuals are in distress and that they may lack more appropriate ways of coping with their emotions. 3. Personality disorders and frequent suicide attempts (a) Crisis management Although it is important to establish and follow a clearly defined management plan, there will be times when, despite the best of intentions, other crises will inevitably interfere with this plan. In some cases involving parasuicidal, borderline individuals, certain behaviours or crises may need to take precedence over the ongoing management plan or goals the clinician and individual have agreed to work towards. These behaviours are hierarchically ordered by importance as follows: 1. Suicide threats, attempts and other life-threatening behaviours 2. Behaviours that interfere with the process of treatment (e.g. missing sessions, being overly demanding, angry outbursts, repeated admissions to hospital) 3. Behaviours that seriously interfere with the individual s quality of life (e.g. substance abuse, antisocial behaviour) (b) Threats of suicide, suicidal gestures or attempts The rate of suicide completion for individuals with borderline personality, although lower than in those with schizophrenia and affective disorder, is substantial. Thus, all suicide attempts need to be taken seriously even if the client appears manipulative and the attempt was unlikely to have been lethal. Problems in interpersonal relationships, depression and substance abuse are considered risk factors for suicide. Suicidal threats or ideation need to be immediately and actively assessed. Once the individual s safety is assured, the goal of any intervention will be the replacement of suicidal behaviours with more adaptive ways of solving problems. A number of studies suggest that the structured problem-solving method is effective for decreasing further suicidal behaviour in individuals who repeatedly attempt suicide. There are a number of advantages in targeting suicidal behaviour as a priority for management. First, making suicidal behaviour a management priority reduces the likelihood of future suicidal behaviour. Second, it communicates that the clinician takes such behaviour very seriously. Third, the individuals themselves soon learn that if they engage in such behaviour, they will spend their time with the clinician discussing this behaviour and applying the problem-solving model rather than being able to spend time on other interests. Fortunately, suicide completion in these individuals becomes less likely as they get older. HANDOUT 329

352 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS QUESTIONS USED TO PROBE FOR SUICIDAL THOUGHTS Whenever any client is angry or depressed, the counsellor should determine whether they are contemplating suicide. Do not be afraid of putting ideas into their head; they are probably there already and your asking will not make any difference. Some questions that can be asked to determine if the client has suicidal thoughts are: Do you sometimes feel it is not worth staying alive? Do you ever think of killing yourself? (If the answer to above question was yes) How would you do it? (If the above answer is yes) Have you ever tried to kill yourself? What happened on that occasion? (And so on) DRUG/ALCOHOL CONSUMPTION AND RISK OF SUICIDE ATTEMPT Many individuals who attempt suicide have drinking problems. These individuals may be very reluctant to admit that this is true. The accuracy of identifying alcohol abusers is increased if individuals with psychosis and organic brain disease are excluded. If two or more positive responses indicating alcohol abuse are given by the client, it will be important to discuss alcohol use with the individual and possibly refer him or her to a suitable drug and alcohol programme, if appropriate. ANTIDEPRESSANTS AND SUICIDE RISK Antidepressants usually help in lifting the symptoms of a depressive mood. However, the psychomotor retardation that accompanies depression often tends to be lifted prior to improvement of the mood. Consequently, there is a period of time during which the individual is severely depressed and yet has a higher activity level. Frequently, during this period, many individuals attempt suicide. Hence, if the individual has just been started on antidepressants and is being managed in the community, it is important that the individual s family or carers keep a close watch on the individual and avoid leaving him or her unattended during this critical phase of management. It is also important that the individual be aware of the time lag before the antidepressant becomes effective. At first, the individual may only notice side-effects. It may be useful to explain to the individual that these side-effects indicate that the medication is beginning to work. MEDICAL COMPLICATIONS FOLLOWING AN UNSUCCESSFUL ATTEMPT Following a suicide attempt, the individual s physical health needs to be closely monitored by a doctor. However, all clinicians need to be aware that some of the 330 HANDOUT

353 Module 7 Submodule 7 Suicide risk assessment and management for patients with HIV/AIDS seemingly less harmful methods may actually cause serious complications. For example, an overdose of paracetamol may lead to liver failure and subsequent death. Unfortunately, some individuals who take an overdose of paracetamol are merely seeking help and attention. Deaths among these individuals are especially tragic. POST-ATTEMPT STAGE Clear the client medically Check or assess the level of risk Explore future plans, i.e. for problem-solving and reasons for staying alive In case relationship problems provided the context for the suicide attempt, it might also be important to understand the specific relationship. Explore their support systems are there family members or friends in whom they could confide? Suicidal behaviour and its management should be based on the view that suicide is a response to a crisis situation; hence, relief of the client s intense emotional suffering is paramount until they regain adequate coping skills and resume full responsibility for their lives. Crisis intervention strategies initially take centre stage to remove the client from danger but long-term counselling is needed to address the issues underlying the attempt. HANDOUT 331

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355 Module 7 Module 7 Submodule 8 Mental health issues associated with HIV/AIDS Handout Submodule 8: Mental health issues associated with HIV/AIDS Session objectives At the end of the session, trainees will be able to: Identify mental health issues and complications associated with HIV/AIDS Explore the importance of maintaining psychological well-being among PLHA Understand the implications of neuropsychological impairment in HIV/AIDS Describe the management of psychiatric complications in patients with HIV/AIDS INTRODUCTION HIV infection has an impact on the mental health status, resulting in cognitive impairment, mood and anxiety disorders, and even psychotic manifestations at times. These complications impair the quality of life, affect disease prognosis, and impede treatment by compromising adherence to medication. The psychiatric sequelae of HIV infection and AIDS are numerous, and have aetiologies that involve neurobiological and psychosocial factors. These include the natural and expected grief reactions to having been diagnosed as being terminally ill. Having a weakened immune system and being in a susceptible emotional state, it is possible to acquire cerebral infections. Psychiatric manifestations may be due to neurological, biological and psychosocial factors and the interplay of these factors. The drugs used for controlling the virus are also associated with psychiatric manifestations as their side-effects, which complicates the issue further. Since a stigma is attached to having HIV/AIDS, patients are rejected by society and even by their family, further jeopardizing their mental health. IMPACT OF HIV/AIDS ON MENTAL HEALTH Social rejection/guilt/shame/low self-esteem Low levels of energy and impairment in social functioning Impaired quality of life Disease prognosis affected Treatment impeded by compromised adherence to medication schedule Maladaptive coping strategies/impaired problem-solving ability Personality factors HANDOUT 333

356 Module 7 Submodule 8 Mental health issues associated with HIV/AIDS Pre-existing psychiatric problems can lead to high-risk behaviour Manifestations The following are some of the psychological manifestations seen in PLHA: Acute stress reactions Anxiety disorders Depression Mania Psychosis Neuropsychiatric manifestations of HIV-associated neurological illness HIV-associated acute stress reaction On discovering their HIV-positive status, individuals may experience a serious threat to their well-being, which leads to intense fear reactions, helplessness and distress. It is a transitory reaction but could eventually result in post-traumatic stress disorder (PTSD). A temporary reaction appears in some individuals after they have been notified of their HIV-positive status or when told that the infection has progressed to full-blown AIDS. The following reactions are common: Fear of contagion (of loved ones) Fear of death, panic symptoms and excessive anxiety Social isolation Verbal expression of rage and anger Denial, numbing and detachment Sleep disturbance, irritability and restlessness Sadness and depressive symptoms Symptoms of PTSD Intense fear, anxiety and a feeling of helplessness Recurrent and intrusive distressing thoughts and recollections Recurrent distressing dreams and flashback Reliving traumatic experiences Avoidance and numbing of thoughts Exaggerated, startling responses Difficulty in paying attention and concentrating Anxiety disorders A positive HIV status changes the social position of affected individuals. PLHA find it difficult to accept their own status after being infected. The anticipation of 334 HANDOUT

357 Module 7 Submodule 8 Mental health issues associated with HIV/AIDS impending doom is worse than the actual reality. PLHA tend to avoid social interaction due to anticipated rejection and thus live with the worry of an uncertain future, social isolation and anticipatory grief reaction. Counselling interventions need to be focused on the anxiety condition of PLHA, and require sensitivity during both the pre- and post-test counselling sessions. Symptoms of anxiety These include Trembling, feeling uncertain, palpitations Shortness of breath and hyperventilation Tense muscles, tiredness Hypervigilance Lump in the throat, butterflies in the stomach, choking, dizziness and fainting spells Sleep disturbance Feeling of dread and excessive worry regarding anticipated events Cold hands, sweating Fear of losing control, panic attacks Fear of death Obsessive and compulsive thoughts are persistent, with repetitive behaviour (handwashing, checking, counting, praying and feeling driven to perform) seen among some clients with HIV/AIDS. In Kerala, VCT counsellors have reported recurrent and persistent thoughts of excessive worry anticipating an uncertain future followed by a feeling of guilt and repetitive, compulsive acts of washing the genitals. The person feels that washing the genitals will clear the HIV infection and, in spite of knowing that this is not true, they continue the act. Depression Depressive symptoms are most common among PLHA. Mood disturbances may occur after the diagnosis of HIV infection. The symptoms manifested are: Prolonged sadness, irritability Loss of interest in most activities Hopelessness, helplessness, worthlessness and feelings of guilt Performance difficulties at work and at home Withdrawal from friends HANDOUT 335

358 Module 7 Submodule 8 Mental health issues associated with HIV/AIDS Decreased appetite and weight loss Fatigue and loss of energy Sleep disturbance Decreased sexual drive Poor attention and concentration Recurrent suicidal thoughts Lowered self-esteem Mania VCT counsellors in India have reported extreme mood swings. Outbursts of extreme irritability, anger, screaming and shouting, and losing control of one s emotions are some of the reported expressions. Symptoms of mania Elevated mood, irritability, euphoria May go without sleep and not feel tired Excessive involvement in pleasurable activities More talkative than usual and loud speech Grandiosity and inflated self-esteem Psychomotor agitation Subjective feeling of pressure of thoughts Psychosis The prevalence of psychotic symptoms is infrequent unless the client has had an earlier episode of psychotic mental breakdown or was diagnosed as a borderline case of psychosis. Generally, these are associated with brain pathology. Often, psychotic symptoms in PLHA are due to neuroleptic druginduced side-effects or due to strong psychological reactions leading to gross impairment in perception and cognition. Symptoms of psychosis Irrelevant speech Hallucinations (perceptions in the absence of auditory/visual/tactile stimuli) Delusions (false, unshakeable beliefs) Difficulty with abstract thinking Sleep disturbances Social and occupational dysfunction 336 HANDOUT

359 Neuropsychiatric symptoms associated with HIV/AIDS Module 7 Submodule 8 Mental health issues associated with HIV/AIDS Primary: Direct to the central nervous system (CNS) Immunopathological changes in the CNS due to HIV infection Secondary: Opportunistic infection (cerebral toxoplasmosis) Progressive multifocal leukoencephalopathy, tumours (cerebral lymphoma) Delirium Most commonly observed organic disorder in hospitalized patients with HIV Those in an advanced stage of the disease and dementia are at high risk Infections and other neurological manifestations Dementia due to HIV/AIDS AIDS dementia complex, HIV-associated dementia Onset is insidious Early symptoms include forgetfulness, loss of concentration, mental slowing, reduced performance on sequential mental activity, e.g. nurse s appointments Early behavioural symptoms such as loss of memory, lack of orientation to time, place and people Apathy Reduced spontaneity/emotional responsivity Social withdrawal Early fatiguability, malaise Loss of sexual drive Depression, irritability and emotional lability Agitation Psychotic symptoms may also occur Early motor symptoms: Loss of balance and coordination, clumsiness, dropping things, difficulty in writing and walking (ataxia) In the late stage: Generalized deterioration of cognitive functions and severe psychomotor retardation Speech problems: Slow and monotonous/mutism General paresis: Confined to bed Bowel and bladder incontinence Myoclonus and seizures Level of consciousness is usually preserved HANDOUT 337

360 Module 7 Submodule 8 Mental health issues associated with HIV/AIDS MANAGEMENT STRATEGIES Assessment and diagnosis Appropriate medical and psychological investigations Pharmacological interventions Psychosocial interventions Ensure pre- and post-test counselling Hospitalization Family education Social support 338 HANDOUT

361 Module 7 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS Handout Submodule 9: Legal ethical issues related to HIV/AIDS Session objectives At the end of the session, trainees will be able to: Highlight the importance of human rights in the context of public health and HIV/AIDS Impart information about legal ethical issues with regard to HIV/AIDS Deal with legal ethical issues arising during HIV/AIDS counselling Provide adequate information to clients on legal issues Paradoxically enough, the only way in which we will deal effectively with the rapid spread of HIV/AIDS is by respecting and protecting the rights of those already exposed to it and those most at risk. Justice Michael Kirby High Court of Australia INTRODUCTION HIV/AIDS is no longer just a medical condition but an epidemic that has vital social, economic, legal and human rights dimensions and ramifications. HIV/AIDS has highlighted the inequalities, widespread stigma and discrimination, and denial of fundamental human rights that exist in all societies. This chapter intends to show the link between HIV/AIDS and the law and human rights, and discuss the legal ethical issues. HIV AND HUMAN RIGHTS The link between HIV/AIDS and human rights is two-fold: HIV/AIDS has become a ground for denying people their rights. It is not uncommon for PLHA to face denial, discrimination and violation of rights in public and private institutions, health-care settings, places of employment, educational services, and within the family and community on the sole grounds of their HIV status. On another front, it is the denial of human rights that makes certain populations more vulnerable to HIV/AIDS than others. Specifically, groups and HANDOUT 339

362 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS subpopulations that experience disempowerment and marginalization because they are dispossessed of their rights or are unable to exercise them are susceptible to HIV infection. Globally and in India, these disenfranchised groups include sex workers, men who have sex with men (MSM) and IDUs. Public health value of rights in the context of HIV/AIDS The link between HIV/AIDS and human rights was highlighted by the manner in which the epidemic progressed in countries such as the US in the 1980s and early 1990s. At the outset, the epidemic was seen among white, male, homosexual populations. Over a period of time, a large number of black or Hispanic women in heterosexual relationships started getting infected. This epidemiological shift could be best explained in terms of human rights. Populations that are socially, economically and legally disadvantaged, and do not have access to rights and entitlements, as in the case of gay men and coloured women in the US, were most affected by the HIV epidemic. Thus, respect for human rights is directly linked to control of the epidemic. Legal/public health responses to HIV/AIDS Globally, there have been two types of legal and public health responses to HIV/ AIDS. These can be categorized as isolationist and integrationist. Isolationist response Mandatory testing Confidentiality breached Discrimination against HIV-positive person(s) Integrationist response Voluntary testing Confidentiality maintained No discrimination against HIV-positive person(s)... Leading to isolation of PLHA... Leading to integration of PLHA The isolationist approach has proved to be unsuccessful in controlling the spread of the epidemic because it further marginalizes already stigmatized and marginalized populations, and discourages people from accessing health services including STI/ HIV testing and treatment facilities. It violates basic human rights and results in driving the epidemic underground. Moreover, policies espousing mandatory testing are logistically difficult to implement. On the other hand, integrationist policies respect fundamental/human rights, encourage access to services as well as promote safe practices. Hence, they have been more successful in responding to HIV/AIDS. 340 HANDOUT

363 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS Isolationist approach An isolationist strategy requires repeated testing of the entire population. In practice, it targets marginalized populations such as sex workers, IDUs and MSM Besides being logistically and economically difficult to implement, it also violates human rights From a public health perspective, it drives the epidemic underground Integrationist approach An integrationist strategy, on the other hand, is based on respect for human rights for promoting access to HIV prevention, care and support services for all The voluntary counselling and testing (VCT) strategy is derived from the integrationist response Experience from most parts of the world where the spread of HIV/AIDS has been slowed or halted has shown that protection and promotion of the rights of those infected and those most vulnerable to infection is the more effective public health strategy. VCT is the mainstay of a rights-based or integrationist response to the HIV epidemic. Thus, the three main legal ethical issues involved in a public health strategy to combat HIV, which arise in clinical and VCT settings, are: CONSENT CONFIDENTIALITY DISCRIMINATION CONSENT for HIV testing CONFIDENTIALITY of HIV status DISCRIMINATION on the basis of HIV in health care, employment and other services THE LEGAL FRAMEWORK To discuss and understand the legal issues related to HIV/AIDS, it is important to have a basic understanding of the legal system and the sources of our laws. The highest law in India is found in its written Constitution. The Constitution guarantees fundamental rights to all citizens, defines the structure of the State, the division of powers between the Centre and states, and between the three wings of the State, i.e. the executive, the legislature and the judiciary. All laws are to be in consonance with the Constitution, and any law or State action that violates fundamental rights can be struck down as unconstitutional by the judiciary. Other sources of law include: Statutes or statutory laws made by the Parliament and the various state legislatures HANDOUT 341

364 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS Personal laws, i.e. laws applicable to persons on the basis of religion and which mostly govern activities in the private sphere, namely matrimony, adoption, guardianship, inheritance and succession Customs, i.e. practices prevalent in certain communities for over 30 years from which customary laws are derived Judge-made law, i.e. common law Sources of Laws Constitutional law Statutory law Common law Customary law Personal law At present, there is no statutory law on HIV/AIDS in India except the Goa Public Health (Amendment) Act, 1986 which applies only to that state. Many of the laws on HIV/AIDS emanate from judicial precedents and are applicable under common law. An HIV/AIDS Bill has been prepared in 2005 which addresses legal issues in the content of HIV/AIDS in clinical settings. The Bill is pending introduction in Parliament. Consent In law, the principles of consent are lucidly laid down in the law of contract which is applicable to medical settings. According to Section 13 of the Indian Contract Act, Consent is taken when two or more persons agree upon the same thing in the same sense. Consent can be expressed (verbal or written) or implied (by conduct or action). Consent may be for a general or a specific purpose. According to Section 14 of the Indian Contract Act, consent is free when it is not caused by the following: Coercion Undue influence Fraud Misrepresentation Mistake Among these, the most significant factor arising in a doctor patient setting or a relationship between a service provider, including a counsellor and a client, is that of undue influence. The doctor patient relationship is one of unequals. The doctor/ counsellor, owing to their knowledge, experience and the trust that the patient/client 342 HANDOUT

365 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS places in them are is in a position to influence the decision of the patient/client visà-vis the course of tests and treatment. To ensure that the patient/client s decision to undertake a test or opt for a specific course of treatment is not influenced, the service provider must provide honest and accurate information to the former. This is the basis of the doctrine of informed consent. It may not be possible to take informed consent from the patient/client under all circumstances. The law recognizes exceptions to consent under situations such as a medical emergency, i.e. when an unconscious patient is brought to the hospital. In such cases, the doctrine of necessity permits the doctor to interfere with the bodily integrity of the patient. However, it must be a necessity and the health-care provider must not act out of convenience. In cases where the patient/client is incapacitated or unable to give consent because of age, physical or mental incapacity, etc., proxy consent, i.e. consent of relatives accompanying the patient or person vested with lawful authority such as the head of the department or the medical superintendent should be taken. Implications of HIV test result HIV infection is not curable HIV test has life-threatening implications Stigma attached to HIV is unprecedented Knowledge of an HIV-positive status itself may lead a person to untold trauma including suicide. Thus, consent for an HIV test is vital HIV scenario The HIV test cannot be treated as any other diagnostic test Consent to any other diagnostic test cannot be taken as implied consent to an HIV test Specific consent for an HIV test is necessary An HIV test must be preceded by informed consent Consent for HIV testing Informed consent requires pre- and post-test counselling Failure to perform pre- and post-test counselling implies no consent Pre-test counselling should include: engagement and assessment risk reduction and planning assistance review and signing the consent form Post-test counselling should include: presentation and encouragement priorities and follow-up HANDOUT 343

366 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS With respect to testing for HIV, it is imperative that specific and informed consent be taken from the patient/client, as an HIV test result can have serious implications on the patient s life. Established protocols in the context of testing include the provision of pre- and post-test counselling. Failure to do so implies no consent, amounting to battery. Legal remedies in such cases include filing a suit in civil courts for damages or in consumer courts for damages against deficiency of services. Besides HIB testing, informed consent explaining the advantages and disadvantages of the intervention should be obtained from patients for any operation conducted on them and for any treatment the doctor prescribes. Informed consent is also a prerequisite for conducting research. Confidentiality Confidentiality arises when there is: A confidential relationship the nature of which may be dependent on factors of trust, knowledge and skill, e.g. a doctor patient relationship or a relationship between a counsellor and client Confidential information, i.e. information that would otherwise not be divulged, which has the necessary quality of confidence about it and has been imparted in circumstances importing an obligation of confidence The principles of privacy and confidentiality are incorporated in: Constitution of India, Article 21: The right to life and liberty includes the right of a person to maintain their privacy. Law of Contract: For example, employment contracts. Common law: The right to maintain privacy and confidentiality is recognized independent of any contract. Courts have recognized the obligation to maintain confidentiality within certain professional relationships in the public interest. Indian Code of Medical Ethics: Confidences concerning individual or domestic life entrusted by patients to a physician and defects in the disposition or character of patients observed during medical attendance should never be revealed unless their revelation is required by the laws of the state. Objective: Community health Maintaining confidentiality Confidentiality in medical settings Not maintaining confidentiality Allow patients to disclose true Prevents patients from disclosing information and seek proper all information; hinders proper medical treatment treatment Community benefits Community suffers 344 HANDOUT

367 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS Judges have recognized that Maintaining confidentiality is a matter of public interest. The right to have one s privacy and confidentiality preserved is not merely an individual right. It is a right in the public interest. If people do not have trust and confidence in the health-care system, they will not access health services except in a critical stage. In such a situation, the epidemic will be driven underground, making it difficult for health specialists to intervene and contain it. Confidentiality assumes immense significance in VCT, i.e. for counselling and HIV testing, because of the stigma attached to the epidemic. Maintaining the confidentiality of individual patients is crucial for protecting public health. People, particularly those at higher risk, will access VCT services including prevention, testing, care and support, only if they are assured of the confidentiality of services. Protection of confidentiality is not only enshrined in medical and professional ethics but has been recognized in common law as well. Exceptions to confidentiality Judicial standard Disclosure is permissible when the public interest to disclose outweighs public interest to maintain confidentiality. Courts have permitted disclosure in the following situations: 1. Required by law (statutory requirement) 2. Administration of justice 3. In the best interest of the patient (disclosure to medical team if necessary for the treatment of the patient) 4. To protect another person (partner notification) 5. Necessary in public interest Confidentiality Partner notification Tarasoff versus Regents of the University of California The court held: (i) general rule is to maintain confidentiality, but (ii) exceptions do arise when (a) a special relationship exists between the parties (b) there is an imminent risk or danger to an identifiable party HANDOUT 345

368 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS The right to confidentiality, though, is not absolute and disclosure has been allowed in certain situations. These include: When revelation is required under law For the administration of justice In the best interest of the patient, and For the protection of another person. The principle underlying some of these exceptions is that disclosure is permissible only if the public interest in making the disclosure is more important than the public interest in the maintenance of confidentiality. This has to be ascertained on a case-to-case basis and there are no set rules. Patient notification With respect to the partner or third party notification, which is a situation frequently faced by physicians and counsellors, the general rule is that one person owes no duty to control the conduct of another or warn those endangered by such conduct. Hence, confidentiality of patients/clients must be maintained. However, exceptions arise in a doctor patient relationship in case the patient poses: An imminent risk or danger, to public health or to an identifiable third party In the case of Mr. X versus Hospital Z (1998) 8 SCC 296, the Supreme Court of India permitted disclosure of HIV-positive status to a wife or a prospective wife on the grounds that the fundamental right of the prospective spouse to lead a healthy life outweighed the fundamental right of the HIV-positive person to privacy and confidentiality. By an extension of this reasoning, the Court suspended the right of PLHA to get married. The same was however restored by the apex Court in Mr X versus Hospital Z (2003) 1 SCC 500. Partner notification and beneficial disclosure As a first step, the service provider should encourage the patient/client to disclose their status to their partner. If the patient/client refuses to disclose their status despite counselling, then the service provider may inform the partner but only after informing the PLHA with proper counselling for the partner. This is a commonly followed medical protocol for partner notification and has been recognized as a good clinical practice. It has also been accepted in courts. Ethics and practices Sometimes, however, a physician must determine whether his duty to society requires him to employ knowledge obtained through confidence to him as a physician, to protect a healthy person against a communicable disease to which he is about to be exposed. In such an instance, the physician should act as he would desire another to act toward one of his own family in similar circumstances. 346 HANDOUT

369 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS Disclosure to third party/partner In accordance with protocols: Identifiable person at significant risk of HIV transmission Counsel and encourage patient to inform partner (self-disclosure) BT versus OEI [1999] New South Wales SC If refuses, inform patient about intention to disclose Inform partner after proper counselling and referral Discrimination The concept of discrimination is incorporated in Articles 14, 15 and 16 of the Constitution of India. These form a part of the fundamental rights, which are enforceable only against the State. Under the Constitution, remedies for discrimination are available against State bodies including government and municipal bodies, State controlled bodies, and corporations created by statute. Discriminatory practices carried out by private entities are not amenable to a writ under Articles 32 and 226 of the Constitution. This is not to say that differential treatment cannot be a part of the State policy. Such differential treatment, however, must satisfy the doctrine of classification. Classification must satisfy the tests of: Intelligible differentia, i.e. an objective criteria to differentiate, e.g. on the basis of educational qualification Rational nexus, i.e. the basis of classification (objective criteria) must have a rational link to the objective of the classification, e.g. classification on the basis of educational qualification to assess suitability for a particular job To explain the doctrine of classification, take the example of a government hospital recruiting a person for the post of Medical Superintendent. The hospital administration invites applications with a minimum qualification of an MBBS degree. Thus, the hospital is making a classification on the basis of an educational degree, i.e. MBBS, which is an objective criterion. There is an intelligible difference between a person holding a medical degree and one without; the first test is satisfied. Further, this basis of classification can be rationally related to the job, i.e. the hospital would require a medical doctor to fill the post of a Medical Superintendent and not, say, a person holding a law degree. Thus, the second test of rational nexus is satisfied. If, however, the hospital makes a further classification of seeking persons with a post-graduate degree in, say, neurosurgery to the exclusion of gynaecologists, HANDOUT 347

370 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS paediatricians, orthopaedicians, etc. then the rational nexus test would not be satisfied unless it can be shown that neurosurgeons are more proficient at hospital management and make better superintendents than medical doctors specializing in other fields. Excluding doctors with a specialization other than neurosurgery from consideration for the post of Medical Superintendent would then be a discriminatory act on the part of the government hospital. HIV status is certainly an intelligible differentia to classify individuals into HIVpositive and HIV-negative. However, whether classification on this basis has a rational nexus to the objective will depend on the facts of each case. Further, the doctrine of nonarbitrariness posits that laws and State action must be just, fair and reasonable. In the context of discrimination in employment on the basis of HIV status, there have been several progressive judicial pronouncements upholding the right of HIVpositive persons to work. The most notable among these is the Bombay High Court s decision in MX versus ZY AIR 1997 Bom 406 pertaining to termination of employment on the grounds of the petitioner s HIV status. The Court held that an otherwise qualified person cannot be terminated from service unless they are is medically unfit to perform the job functions or poses a significant risk to others at work. Another significant principle in the context of employment is that of reasonable accommodation. This principle can be invoked in situations where a PLHA is medically incapacitated and unable to fulfill the requirements of their present job or poses a substantial risk to people they meet during the course of their job. Such a person can be accommodated in another job commensurate with their skills so long as that does not pose undue financial or administrative hardship to the employer. In Bradley versus University of Texas M.D. Anderson Cancer Center, the Court allowed an HIV-positive surgical technician to be moved to another department within the hospital where he did not pose a serious risk to patients. However, there is no precedent in India till date. With respect to discrimination in the health services, Article 21 of the Constitution of India guarantees the right to life and liberty to all persons, which includes the right to health. While State health-care institutions are obliged to provide medical treatment to all persons in emergency as well as nonemergency situations without discrimination, private health-care establishments are obliged to do so in emergency situations only until the patient can get other medical assistance. Further, in a public health-care setting, the burden of proof to justify refusal of treatment lies with the health-care provider. Some other areas where PLHA face discrimination include education, insurance, 348 HANDOUT

371 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS and travel. The specific remedies available would depend on the nature and facts of each case. Given the widespread nature of discrimination that PLHA experience in various spheres, there is a need to institute an anti-discrimination legislation that will cover both public and private settings. This submodule highlights the need for hope and dignity for PLHA by linking the legal and ethical issues to the epidemic. The main dimensions touched on are the importance of consent, confidentiality and lack of discrimination as the fundamental rights of humans. This Submodule also stresses the need for society to develop an attitudinal shift towards people and respect them for what they are rather than what they do. HANDOUT 349

372 Module 7 Submodule 9 Legal ethical issues related to HIV/AIDS 350 HANDOUT

373 Module 7 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors Handout Submodule 10: Identification and management of burn-out in caregivers and counsellors Session objectives At the end of the session, trainees will be able to: Understand the role and needs of caregivers Understand burn-out and the factors causing it Describe factors leading to stress in counselling and care of PLHA Manage burn-out OVERVIEW OF HIV/AIDS CAREGIVING The changing demographics of the HIV epidemic, along with the growing complexity of medical care, have created major challenges for the health professionals who provide curative and palliative care, and for the informal caregivers who provide emotional and practical support to relatives and friends living with the disease. As treatment options have expanded, so have the stresses experienced by caregivers. Prolongation of the disease course, uncertainty about overall prognosis, and a roller coaster pattern of repeated exacerbations and remissions in the later stages of HIV disease have intensified the emotional and physical demands of caregiving. Many of these caregivers face the additional burdens of poverty, inadequate housing and lack of knowledge about available resources. Some are HIV-positive themselves. These developments underscore the importance of recognizing and meeting the needs of HIV/AIDS caregivers over the long term both for their benefit and for the wellbeing of people in their care. Two types of caregivers provide clinical care and support services to people with HIV/AIDS. Formal caregivers include health professionals, counsellors and social workers who are trained and compensated for their caregiving activities. The trained volunteers and spiritual counsellors associated with AIDS service organizations, AIDS care teams and hospice programmes also fall in this category. Informal caregivers include relatives, spouses/partners and friends who provide in-home care usually on an unpaid basis. These caregivers vary in the types of tasks they perform, the amount of time they devote to caregiving and living arrangements (i.e. same or separate household). HANDOUT 351

374 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors ROLE OF INFORMAL CAREGIVERS Informal caregivers perform a variety of roles that help people with HIV/AIDS adhere to treatment regimens, avoid unnecessary hospital admissions, reduce reliance on formal caregivers, remain at home longer and maintain a certain quality of life. Traditionally, family members have served as the primary caregivers for seriously ill individuals. Because HIV care involves more diverse social networks, many HIVpositive individuals have redefined family boundaries to include lovers, friends and other chosen kin. Important tasks performed by informal caregivers Emotional support (e.g. comforting, empathizing and providing encouragement) Help with activities of daily living (e.g. feeding, bathing, dressing and help in the toilet) Help with central activities of daily living (e.g. cleaning the house, running errands, providing transportation) Management of financial and legal matters Health-care advocacy (e.g. linking the care recipient with formal and informal services, communicating with health professionals) Nursing care (e.g. dispensing medications and monitoring their use, administering injections, inserting catheters) Burdens and rewards of caregiving Psychologists use the term caregiver burden to describe the physical, emotional, financial and social problems associated with caregiving. Burden can be assessed in terms of objective or subjective impact. The objective impact of a burden is assessed by the extent to which caregiving disrupts daily routine and social relationships, and negatively affects resources. Examples include forced changes in household routines, missed days of work, family friction, reduced social contact, loss of income and/or reduced energy. The subjective impact of a burden is assessed by the caregiver s perceptions of and reactions to caregiving demands. Caregivers with high levels of subjective burden may report feeling trapped, feeling nervous or depressed about their relationship with the care recipient, or resenting caregiving tasks even when their objective burden is relatively low. Rewards of caregiving Although studies of caregiving tend to focus on the burden of caring, there are also many rewards. When asked about the positive aspects of providing HIV/AIDS care, informal caregivers cite opportunities to: Bring a mission and purpose to one s life Develop empathy and self-knowledge 352 HANDOUT

375 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors Gain a sense of personal effectiveness by demonstrating competence under very difficult circumstances Experience the positive feelings associated with loving, caring and feeling needed Causes of burden for informal caregivers Multiple factors contribute to caregiver burden. First, caregiving usually comes as an unexpected role, one for which people are neither trained nor prepared. To assume this new role, caregivers must restructure pre-existing role obligations and social activities, and the ways in which they relate to the care recipient. The physical demands of informal caregiving also contribute to the burden. Unlike formal caregivers, relatives and friends providing in-home care are often on call 24 hours a day. While working this 24-hour shift, caregivers may be required to perform multiple, and sometimes conflicting, roles. The emotional issues surrounding caregiving are also a source of burden. For people of all ages, HIV/AIDS caregiving places the emotional strain of dealing with an unpredictable and currently incurable disease. Some caregivers are burdened by fears of contracting HIV even when they know there is little basis for concern. Those who are already infected may worry that no one will be around to care for them when they become ill. Adjusting to disease progression can be especially difficult for caregivers who have experienced multiple losses and the attenuation of social support networks. The financial impact of caregiving can be a major source of burden. Many families suffer severe economic hardships when a key wage earner is forced to reduce work hours or leave paid employment to care for a sick partner or relative. As bills accumulate, the family s most basic needs may go unmet. The loss of income also makes it difficult for caregivers to access formal resources, such as home health and relief from providing care and support from others, which could make their tasks more manageable. A final source of burden is the stigma surrounding HIV disease. Community rejection of HIV-positive individuals because of their disease or the mode of transmission often extends to the relatives and friends who provide care. UNDERSTANDING BURN-OUT The term burn-out is usually used to describe the feelings associated with longterm job-related stress. Burn-out refers to a progressive loss of idealism, energy and purpose experienced by people in the helping professions as a result of the conditions of their work. These conditions may include insufficient training, client overload, bureaucratic or political constraints, gap between aspirations and accomplishments, HANDOUT 353

376 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors etc. Burn-out has been associated with work overload; role ambiguity; role conflict; time and staffing limitations; lack of advancement; poor work relations; lack of peer support; increased demands by patients and families; and frequent exposure to hopeless situations, and to death and dying. Individuals who have a sense of mastery and control over the difficulties of life and a problem-free coping style tend to suffer less burn-out. Burn-out syndrome Burn-out is a syndrome of emotional exhaustion, depersonalization and reduced personal accomplishment that can occur among individuals who do people work of some kind. It is a response to the chronic emotional strain of dealing extensively with other human beings, particularly when they are troubled or having problems. Physical symptoms such as fatigue, sleeplessness, feeling nervous, tension pains and lack of appetite Psychological symptoms in the form of depression, irritability, lack of motivation and drive, grief and guilt, which are closely linked and may occur soon after the death of a patient Behavioural symptoms may manifest as staff conflict or as job home interactions or as problems at home and work A feeling that one is acted upon rather than exercising choice. Burn-out is characterized by: Emotional exhaustion Indifferent attitude towards the care recipient Low sense of personal accomplishment a tendency to evaluate oneself negatively and dissatisfaction with accomplishments. FACTORS CAUSING BURN-OUT AMONG FORMAL CAREGIVERS Burn-out is the result of a variety of factors. These include: Patient behaviour Working conditions Emotional depletion Physical isolation Psychological isolation Counselling relationship Personal disruptions Patient behaviour Dealing with psychological problems in clients has been found to be more stressful than dealing with physical problems. Stress often results from dealing with difficult 354 HANDOUT

377 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors patients (those having problems accepting their HIV status; patients who are angry and hostile; those who abuse alcohol or drugs; young patients and children; negative responses from family members; inadequate resources; and patients with whom the staff identifies or develops a personalized relationship). Terminally ill patients probably evoke the most distress. In the case of AIDS victims, these reactions are often amplified in counsellors. Clients may displace their feelings of anger, betrayal and hopelessness onto the counsellor. Counsellors may also react to sexually explicit topics with discomfort. Working conditions A wide range of employment conditions can add to the distress of the therapist or the counsellor. Organizational politics, excessive paperwork, a demanding workload and professional conflicts head the list of complaints. For a new entrant or a volunteer, unrealistic expectations and resistance to the ideas mooted by them can be a major source of stress. Inability to meet regulations, policies and procedures may induce feelings of frustration, anger, guilt and disillusionment. Criteria for success, which are usually left to the counsellors to define, often turn out to be either idealistic or unrealistic, leading to frustration. Emotional depletion Emotional depletion is directly linked to burn-out. Constant giving to clients without the satisfaction of success leads to discontent and eventual burn-out. Counsellors exhibiting burn-out may become more rigid and, narrow-minded, with a decreased capacity to handle ambiguity. They may also become more detached, critical and suspicious, making tolerance and acceptance of clients more difficult. Physical isolation Most of the voluntary counselling and testing centres (VCTCs) are located away from the main set-up of the hospital. Most often, counsellors lack interaction with their colleagues during working hours. Moreover, some VCTCs do not have adequate number of clients to keep them fully engaged. Physical inactivity also probably plays a role in physical isolation. Psychological isolation The very nature of counselling mandates that the counsellor s own needs be secondary to those of the client. This requires the counsellor to limit the amount of self-disclosure. Detachment and distance, though appropriate for the profession, may hinder the counsellor from responding in a genuine and spontaneous way to outside relationships, limiting the ability to be comfortable and forthright with friends. The clause of confidentiality, at times, can cause isolation and hinder the process of seeking emotional support from family and friends. HANDOUT 355

378 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors Counsellor relationship The most stressful aspect associated with the counsellor client relationship is counter-transference. Counter-transference is often invoked when practitioners recognize within themselves the client s experience, and are caught in the dilemma of trying to empathize with the client s feelings, while at the same time trying to avoid being adversely affected by them. Counter-transference reactions include the arousal of guilt from unresolved personal struggles, inaccurate interpretations of the client s feelings, boredom and impatience during work, etc. The counsellor needs to be skilled enough to identify such reactions so as to take corrective action. Personal disruption This area would encompass issues, such as change in the counsellor s marital status, serious illnesses experienced by the counsellor, etc. FACTORS LEADING TO STRESS IN HIV/AIDS COUNSELLING AND CARE Many factors cause stress in staff working with PLHA they have to provide care with limited resources, cope with feelings of hopelessness and helplessness, and sometimes face discrimination because they work with people who have a stigmatized illness. Some factors that cause stress are: 1. Limited treatment options and poor resources 2. Secondary stigmatization of working with a stigmatizing disease 3. Illness, disease, disability and disfigurement 4. Dealing with sexual issues 5. Identification with the client and intense personal involvement 6. Dealing with people who have alternative lifestyles such as substance users, sex workers, homosexuals, etc. 7. Fear of infection 8. Exposure to death and multiple losses Stages of disillusionment As the counsellor moves towards burn-out, there is a tendency to move through four stages of disillusionment: 1. Overenthusiasm 2. Stagnation 3. Frustration 4. Apathy Overenthusiasm This is the initial period of high hopes, high energy and unrealistic expectations, when one does not know what the job is all about. It is when one does not need 356 HANDOUT

379 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors anything but the job, because the job promises to be everything. Overidentification with clients, and excessive and inefficient expenditure of one s own energy (including voluntary overwork) are the major hazards of this stage. Stagnation Here, one is still doing the job, but the job is no longer thrilling enough to substitute for everything else in life. Enough reality has come through to make one feel that it might be nice to have leisure time, a little money to spend, some friends, a companion, a family and a home. The emphasis now is on meeting one s own personal needs, and the issues of money, working hours and career development now become important. Frustration At this point, one calls into question one s effectiveness in doing the job and the value of the job itself. What is the point in trying to help people when they do not respond? What is the point of trying to help people when the bureaucracy frustrates one s best efforts? The limitations of the job situation are now viewed not simply as detracting from one s personal satisfaction and status, but as threatening to defeat the purpose of what one is doing. Emotional, physical and behavioural problems can occur at this stage. Apathy This is the typical and very natural defence mechanism against frustration. It occurs when a person is chronically frustrated by one s job, yet needs it to survive. Apathy is the attitude that a job is a job. It means putting in the minimum required time (as against the overtime that is gladly undertaken during the stage of overenthusiasm), avoiding challenges (even avoiding clients whenever possible), and seeking mainly to keep from endangering the secure position that compensates, however inadequately, for the loss of job satisfaction. MANAGEMENT OF BURN-OUT Proper interventions need to be planned to prevent burn-out among the staff. As per each stage of disillusionment discussed above, interventions could be planned by the counselling centre: Stage of disillusionment Overenthusiasm Stagnation Frustration Apathy Intervention Realism Movement Satisfaction Involvement HANDOUT 357

380 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors Realism to counter overenthusiasm This is the best time for intervention before the damage is done. The interventions could be geared for reality orientation towards the field. Prepare staff members for what they can expect. Let them know right at the beginning what burn-out is all about, and how to recognize it. Sharing by other counsellors in the field could help bring in a realistic perspective. Regular in-house training workshops or sending the staff to outside agencies for these might help. However, the danger of burn-out setting in after the initial workshops-high is something that cannot be wished away. Regular social interactions by the staff in the form of picnics, celebrating festivals, retreats with time for leisure activities, etc. help not only to build up a team but also to prevent burn-out. Other activities, such as visiting libraries, practising yoga, listening to music, also help. Movement to combat stagnation At this stage, interventions designed to get the counsellor s career going are important. The staff should be sent for further training/education. In our degree-conscious society, it is the most consistently used intervention. Many people express doubts about whether what they learn in advanced degree programmes really helps them work with people. The practical utility of academic or other skill-building programmes varies from person to person and field to field. However, the most useful lesson to be learned from any course of instruction is that there is always more to learn. There are many ways a job can be made more bearable. One method used is by restructuring the time of the counselling centre and the shifts. Changing one s job description, being in a position of more responsibility, on-the-job supervision by outside faculty, etc. are some ways of reducing stagnation. In case the centre has some other programme/project, the possibility of shifting to that might be considered. Attending conferences helps break the monotony and has the added benefit of acquiring new perspectives. Counsellors showing signs of stagnation can be motivated to start a journal club or take up some other noncounselling activity within the centre so as to combat the feeling of stagnation. Satisfaction to combat frustration At this stage, the energy of discontent makes the possibility of change very high. Close supervision, counselling, possibilities of job change, etc. can also be discussed. Changing jobs in a country like ours might not sound like a very good proposition. However, sometimes a varied experience helps in rekindling enthusiasm, in case the job change is not sought to just escape from the commitments of the previous one. Sometimes getting involved in voluntary work with another agency for a short period helps get exposure to another dimension of work which otherwise might have remained unexplored. 358 HANDOUT

381 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors Identifying burn-out syndrome Check if you Are dissatisfied with what you do Feel exhausted Avoid work assigned to you Feel a lack of interest and motivation Miss appointments with your clients Have disturbed sleep Face interpersonal difficulties at work Feel at a loss Have aches and pains Feel worthless Procrastinate Seek more and more leave from work Lose temper at work Make more mistakes Ways out Get set every day. Share your feelings. Reward yourself for everything you do. See and explore novelty in your work. Dissociate emotional stimulation at work with the rest of your world. Practise being assertive. Relax. Modify lifestyle. Bring expectation to an optimal level. Track and monitor cognition/thoughts. Monitor pleasure and mastery. Seek help. Attend refresher courses at regular intervals. Involvement to combat apathy At this stage, the issue is that the feeling of apathy has to be turned into a feeling of involvement. Confronting the staff member might help. However, the confrontation should preferably be done in a nonthreatening atmosphere and focus on professional HANDOUT 359

382 Module 7 Submodule 10 Identification and management of burn-out in caregivers and counsellors behaviour/attitude. Problem-solving skills might need to be reviewed and sharpened. Leaving the field might be an extreme option, but should not be viewed as a defeat. For some people, it might be a very good decision, and lead to greater satisfaction and accomplishment in other allied fields. PERSONAL COPING TOOLS Counsellors need to recognize the possibility of facing burn-out and use various coping tools to prevent such eventualities. First, they have to be aware of the problem and take responsibility for doing something about it. Next, they have to achieve some degree of clarity and develop tools for coping in addition to those already being used. Some personal coping tools include: Developing a personal philosophy regarding illness, death and one s role in caring for an ill person Recognizing that the counsellor is there not to prevent death but to make dying easier Maintaining records, journals and memory books Developing self-control, using humour, learning from mistakes and sharing frustrations Maintaining self-esteem and valuing personal worth by evaluating the gains achieved: Seeing the patient obtain relief Positive feedback from the patient and family Empathetic contact with patients Assisting patients and families to cope Witnessing the smooth termination of life Accepting that there will always be a limit to what one can do Lifestyle management: Being involved in activities outside work Physical activities and diversions Nonjob and non-hiv/aids-related interactions Taking time off Adequate nutrition and sleep Meditation and relaxation Talking to peers during meetings and by forming informal clubs. 360 HANDOUT

383 Module 7 Module 7 Submodule 11 Grief and bereavement counselling Handout Submodule 11: Grief and bereavement counselling Session objectives At the end of the session, trainees will be able to: Be sensitive to issues related to death, bereavement and loss experienced by clients and their families Provide alternate coping skills to the client/family members to tide over the trauma Develop and provide a network of support systems to enhance the quality of life Be sensitive to the need for empathy and emotional support of clients and caregivers Use the tools for grief counselling INTRODUCTION The terms grief, bereavement and mourning though often used interchangeably in death and dying have different connotations. Grief implies a process that occurs in response to any type of loss accompanied by acute stress Bereavement is the state of having suffered a loss. This incorporates the period of adjustment in which the bereaved learns to live with the loss Mourning is a public expression of grief determined by cultural and religious values Grief is a multidimensional phenomenon, experienced emotionally, mentally, spiritually and physically. People experiencing grief need nurturing, compassion and patience. The early stages of disease progression may or may not feel like a time of preparation for death. Not only have the typical end-of-life issues surrounding degenerative illnesses and impending death to be faced, but also issues specific to the social aspects of the disease. Anticipatory grief sets in as soon as symptoms develop and are perceived as life-threatening. This includes changing assumptions adapting to role changes; separation from significant others; and feelings of sadness, depression and anxiety. Grieving processes of loved ones are also affected, who must face the impending decline and death of a partner, child, parent or friend who has become a person with AIDS. Thus, those newly diagnosed as HIV-positive may feel as if they have received a death sentence. For adults, the period of transition from health to terminal illness involves both continuing to live a normal life and wrapping up personal affairs. As the inevitability of decline and death becomes apparent, a good death and providing for the future of loved ones becomes increasingly HANDOUT 361

384 Module 7 Submodule 11 Grief and bereavement counselling important. Waiting for the death of a PLHA can become a considerable source of stress for everyone, and can strain and test relationships. Children may be ostracized or harassed at school if a relative has AIDS, so also an employee may be totally alienated from others in the workplace. When death is imminent, the main concern of both the PLHA and those caring for them is to enable a comfortable and dignified death. Those left behind may feel not only anguish over the death but also guilt over their relationship with the dead person or their inability to properly interact with and care for the PLHA while that person was alive. Community support for all involved, along with counselling and bereavement support groups, may be of comfort during this period. There is yet another feature of AIDS bereavement that concerns the HIV serostatus of the bereaved. HIV-seropositive bereaved individuals have shown higher levels of distress and unresolved grief associated with loss when compared with their HIVseronegative counterparts. For couples that are serodiscordant (i.e. those who have different HIV serostatus), the dynamics differ as one spouse prepares for death and the other prepares for life alone without the significant other. This has implications for the bereavement process. PLHA encounter death and suffering as an inevitable reality. To face this ultimate reality, it is necessary to wind up unfinished business and make necessary arrangements to dispense with one s responsibilities, especially when one is coming closer to death during the terminal stage. For those with children, the question of how and when to let a child know that the parent is dying would complicate the process. Bereaved children in turn express a need for reassurance and validation of emotional security during all phases of the grief process. Finding long-term care presents enormous challenges, whether it is with family members who may resist taking care of someone with AIDS or in an affordable hospice or other institutional facilities. Such problems put an additional emotional strain on the PLHA and may make the process of coming to terms with the illness and the end of life more difficult. Acute survivor guilt can ensue when survivors blame themselves for the death of a loved one or friend with feelings of self-loathing and remorse. This is an added dimension to the grief experienced by family members. Death and dying Across cultures, death is accepted as the ultimate reality of life, but perceived very differently, with distinct traditions based on religion, ethnic differences or other factors. Some ways in which death and dying may differ across cultures are: Funeral practices: Such as burial or cremation of the body and memorial services Grieving/mourning process of family and friends is culture-specific, based on 362 HANDOUT

385 Module 7 Submodule 11 Grief and bereavement counselling Factors of grief and bereavement Debilitating nature of the disease Emotional trauma Loss of social support Financial constraint Impending death Reactions to disease Shock: A feeling of pain, numbness, apathy Disorganization: unable to do or execute the simplest things Denial: This cannot happen to me Depression: Sets in when denial wanes off Onset of guilt for actual neglect and indifference to the disease Anxiety: Fear of losing control of one s feelings or more general apprehension about the future Aggression too can range from irritability to outbursts of anger towards family, friends, God, fate, doctors, nurses, clergy or even the person who has died Resolution: Emotions die down, an acceptance of death emerges, an acceptance that life must go on Employee family assistance programme Helping PLHA with assessment, counselling and referral: Job-related stress, financial or legal concerns Marital and family problems Separation/divorce/custody Alcohol and drug dependency Difficulties with children Psychological disorders Anger management Retirement planning Ageing parents Sexual harassment and abuse Gambling and online addiction Bereavement HANDOUT 363

386 Module 7 Submodule 11 Grief and bereavement counselling customs, traditions and religious beliefs, and may involve erecting shrines or monuments for closure. However, in some cultures, talking about death is a taboo in itself. SYMPTOMS OF GRIEF PHYSICAL Hyperactive or underactive Feelings of unreality Physical distress such as chest pain, abdominal pain, headache, nausea Change in appetite Weight change Fatigue Sleeping problems Restlessness Crying and sighing Feelings of emptiness Shortness of breath Tightness in the throat EMOTIONAL Numbness Sadness Anger Fear Relief Irritability Guilt Loneliness Longing Anxiety Meaninglessness Apathy Vulnerability Abandonment SOCIAL Overly sensitive Dependent Withdrawn Avoiding others Lack of initiative Lack of interest BEHAVIOURAL Forgetfulness Searching for the deceased Slowed thinking Dreams of the deceased Sensing the loved one s presence Wandering aimlessly Trying not to talk about the loss in order to help others feel comfortable around them Needing to retell the story of the loved one s death From Bereavement and support by Marylou Hughes ( Taylor and Francis, 1995) 364 HANDOUT

387 Module 7 Submodule 11 Grief and bereavement counselling PHASES OF GRIEVING Once a diagnosis of AIDS has been made, the process of coming to terms with impending death becomes unavoidable for the PLHA. For both PLHA and their loved ones, the stages in facing death include denial and shock; anger; bargaining and pleading with God, the spirits, or fate; resigning to the fact that death is inevitable and life will end soon; and finally, acceptance of death and a desire to make their remaining lives meaningful and death dignified. Thus, grieving goes through different stages: Shock and denial (numbness): The very diagnosis of being HIV-positive may result in shock and denial. Persistent denial, shock and numbing have a harmful effect since the person is isolated and does not get the emotional support they need. A person cannot begin to grieve and heal until they move out of this stage. Anger (yearning and searching): Anger results from a deep irrecoverable yearning and searching for the dead person. It may be manifested in the form of blaming others for the loss, getting easily agitated, finding it hard to concentrate, relax or sleep, and emotional outbursts. Bargaining stage: The affected person starts bargaining and often makes promises to a higher power, agrees to change their life if allowed to live, and asks for an opportunity to do something special before they die or face disability. Depression, despair and intense pain: In this stage, people may suffer from insomnia (inability to sleep), depression, acute sadness, crying spells, pangs of longing, loss of appetite and personal feelings of inadequacy. They may have difficulty functioning on a day-to-day basis and feel hopeless about their situation. Re-establishment of balance: Letting go and moving on with life is the beginning of acceptance, and life begins to return to normal. This may mean resignation, not necessarily contentment. The pain gradually lessens, and people recover their desire to live. They feel that they can say goodbye to the deceased and cope with their grief. They reintegrate themselves into their families, work and social lives. Phases of grieving Shock and denial (numbnesss) Anger (yearning and searching) Bargaining Depression, despair and intense pain Re-establishment of balance (acceptance) HANDOUT 365

388 Module 7 Submodule 11 Grief and bereavement counselling DYING AND HIV/AIDS: ITS IMPLICATIONS Death due to AIDS is associated with varied concerns, namely, Shame and fear of social rejection Loss of job or financial instability Planning for long-term treatment and a place to stay (institutes or hospices) Making provision for dependants and children (adoption or orphanage placements) Horror at the nature of dying (due to very unpleasant and painful opportunistic infections) Possible HIV infection of other family members (spouse, children) Homosexuality issues and taboos or any other disenfranchised relationships (not socially recognized as a valid relationship) Anger at the deceased if HIV was contracted through risky behaviour HELPING CLIENTS DEAL WITH LOSS AND BEREAVEMENT Recognizing the intensity of grief and dealing with it can help people resolve the substantial loss. Grief counselling helps grieving individuals go through the phases of grief. The goals of grief counselling include: Identifying and legitimizing feelings of sadness, anger, guilt and anxiety; accepting the reality of the loss Helping the person express spoken and unspoken, suppressed or dormant feelings Helping the person overcome difficulties in readjusting to life after the loss Encouraging the person to say goodbye (sometimes before the loss) and complete unfinished business Facilitate the individual in self-help and coping skills to live fully, and enjoy life wherever and whenever they can. Reinvesting energy in new ways (the ability to transfer the emotional energy invested in the relationship with the deceased into a new, healthy approach to life) Providing continuous support and making necessary referrals for professional or ongoing grief therapy Counsellors use the following to facilitate the client s grieving process Active listening: Clients feel comforted when counsellors show empathy and try to understand their level of distress. Show compassion: Adopting a humane approach without infringing on the clients human rights. Avoid clichés: Some statements meant to comfort the bereaved may have a negative impact such as You are holding up so well, Time heals all wounds, Think of all you have to be thankful for, Be happy he is out of pain, He is in a better place, She s at peace now, God never gives us more pain than we can handle, etc. these fail to acknowledge the depth of feeling of the bereaved. 366 HANDOUT

389 Module 7 Submodule 11 Grief and bereavement counselling Bereavement counselling Help clients express and identify their feelings Provide reassurance of the normality of these feelings Assist with problem-solving Assess client s actual needs and wants Provide continuous support Counsellors Actively listen Show compassion Avoid clichés Understand the uniqueness of giref Understand the uniqueness of grief: Each client s grief and method of handling grief is unique to them. Further, there is no right way to grieve, nor is the time taken for healing the same for everyone. TOOLS FOR GRIEF COUNSELLING Verbal cues and approved language: Clients should be made to understand that it is okay to grieve, cry or laugh. In addition, talk of the deceased in the past tense to accept reality (e.g. your son died, instead of you lost your son or he passed away ; these substitutes can confuse the grieving person and can perpetuate denial. Symbols: Symbols that represented the departed such as music, photographs, places, etc. can be used to trigger reminders and help release of grief. Writing and drawing: Writing a letter to the deceased could release grief. This can be particularly useful if the client needs to deal with unfinished business, if the client is having difficulty with closure (i.e. letting go ), or the death was sudden and unexpected, or to vent emotions. Rituals: Most cultures have traditional ways of mourning that can help in relieving grief (e.g. lighting a candle at church, singing a song or making a shrine in the memory of the deceased). Role-playing and/or imagery: Help the person imagine what they would be telling the deceased if the person were still alive (especially if the mourner did not have the opportunity to say these things). Imagery can also be used to create a peaceful picture that offers healing and strength. Clients themselves should choose the imagery that has special meaning for them. HANDOUT 367

390 Module 7 Submodule 11 Grief and bereavement counselling Cognitive restructuring: Help clients find alternative ways of thinking about the loss. Encourage them to consider messages the deceased might have had for them, if that person were with them at that moment. This may offer inspiration or insight. The question most often asked of a bereavement counsellor or therapist is, Am I losing my mind? The counsellor can also offer Trauma Response Link hotline services through: Individual access to help, 24 hours a day Support groups and other treatment services On-site help Tele/web counselling Here, trained professionals provide responsive, immediate counselling. Whichever of the above is the appropriate route for a client, the counselling process of rapportbuilding, genuineness, creating a context for ease and comfort, permission to grieve, acknowledging the client s sense of loss, encouraging the caller to seek support, and so on are all very crucial for effective counselling. They guide people through the recovery process and help them deal with the effects of trauma and prevent other problems such as depression, suicidal ideas or ongoing PTSD. SPIRITUAL WELLNESS FOR CLIENTS WITH HIV/AIDS It is not uncommon for PLHA to be drawn even closer to their spiritual beliefs, having to face the finality of the disease. Hope and spiritual well-being are essentials for living with meaning. Spirituality gives hope; not necessarily a cure. It gives a meaning for life to the dying and those who confront death. A PLHA who had been an IDU for 20 years was finally able to remain drug-free after being diagnosed as having HIV/AIDS. As a result of his HIV status, he went on to become a professional community liaison with HIV/AIDS drug researchers, and a well-known political activist for PLHA. As he commented, Ironically, this disease has given me my life s purpose and at the same time, is taking my life away. Nontraditional gay lesbian bisexual transgender (GLBT) individuals have also sought spiritual connection through yoga, meditation, new-age healing, community activism, and other methods. The aim is to maximize the quality of life in a realistic way, be it a spiritual or a rational way. Entire families are often living with the consequences of the infection. Enormous feelings of loss and guilt are experienced as the family attempts to cope. In such circumstances, family counselling, including the spiritual domain, may be an avenue for the healing process. 368 HANDOUT

391 Module 7 Submodule 11 Grief and bereavement counselling Grief counselling and cognitive behaviour counselling come in handy to manage a disturbed mental status and irrational beliefs. Apart from this, the patient needs a mentor to realistically apprise them of their physical and mental condition, and equip them with coping strategies. The counsellor should help clients find organizations, both government and nongovernmental, for medication and assistance in hospitalization. Legal help to deal with issues regarding property, assets, custody of children, wills and other such matters is also needed to dispense with one s ultimate responsibilities. An attempt at exploring possibilities such as whether the patient can benefit from employee schemes, general and medical insurance, etc. should be undertaken to make the client feel secure. In addition, the counsellor is the client s best friend, Guru and well-wisher who will see them through the difficult years ahead. This unconditional support, empathy and acceptance could give meaning to their life and death. Once clients get this sense of security, they could develop a positive outlook to life and live their remaining years more constructively and fruitfully, with endurance and fortitude. To conclude, various techniques of counselling tailored to the needs of the client should be worked out for effective grief therapy. Some therapeutic interventions are listed below: Therapeutic interventions Grief therapy Grief and bereavement counselling (existential approach) Cognitive therapy (see Module 7 Submodules 4 and 6) Family therapy (see Module 7 Submodule 2) Group therapy (see Module 7 Submodule 1) These therapies are used as per the need of the client. HANDOUT 369

392 Module 7 Submodule 11 Grief and bereavement counselling 370 HANDOUT

393 Evaluation Form 1 Pre- and post-training knowledge questionnaire Code number: Score 1. List the three routes of HIV transmission List three ways HIV is not transmitted What do we call the period between when a person becomes infected with HIV and when it is possible to detect HIV antibodies? 4. A person can transmit HIV to someone else as soon as they become infected. True/ False (underline correct response) 5. What are the two ways to test for the presence of HIV in a person? All babies born to HIV positive mothers will test positive for HIV antibodies at birth. True/ False 7. Give three reasons why HIV counselling is important EVALUATION FORMS 371

394 Pre- and post training knowledge questionnaire 8. Someone you see for pre-test HIV counselling tells you they have a partner but had sex with someone else four months ago. They did not use condoms with the other person and want to make sure they did not get HIV. The only other person they have had sex with is their regular partner. They do not use condoms with their regular partner because they trust them. They last had sex with their regular partner two days ago. Should this person have follow-up test? Yes / No (Underline correct response) 9. In order what are the four principles of transmission? Underline which of the following are the highest risk behaviours for the transmission of HIV: Sharing needles to inject drugs Kissing A woman getting semen into her mouth Mutual masturbation (male to male) A baby in womb during mother s seroconversion to HIV Mopping up blood spill A man receiving oral sex from a woman Anal sex with ejaculation 11. List four things that should be covered in a pre-test counselling session List three ways to show you are listening to a client Name two types of questioning used in counselling and give an example of each. 1. Example: 2. Example: 372 EVALUTION FORMS

395 Pre- and post training knowledge questionnaire 14. When taking a risk practices history with a client who has had an occupational exposure to HIV you should not ask them any questions about their sexual history. True / False 15. List four things you should cover when giving someone a negative HIV test result. (Order is not important) What are the five things you should cover when giving someone a positive HIV test result? (Order is not important) Rapid HIV tests have low sensitivity and may miss identifying HIV infection. True / False 18. You are using a serial rapid HIV test algorithm on a client. The test comes back HIV positive on one test. You run another test and it comes back positive. Can you report the test to the client that the tests are positive? True / False. 19. You are a VCT counsellor. A male client has come for a test today. He admits he has visited sex workers when he goes out of town on business. You later recognise this man to be the husband of a woman attending your daughter s school. This woman has become a friend and you feel you should warn her about her husband s behaviour. As a counsellor, you should warn this woman of her husband s behaviour. True / False EVALUATION FORMS 373

396 Pre- and post training knowledge questionnaire 20. List three self-care strategies for counsellors Imagine there is a needle stick injury in the hospital. The client is sent to you after the injury. List in correct order from the first thing you should do down to the last one for VCT in the context of the management of occupational exposure (Assume that post-exposure prophylaxis is [PEP] is available for occupational exposures amongst health workers) When a client discloses a sexual assault what are the first three things you should do before conducting a forensic interview? Is there any evidence that there is a reduction in risky sexual behaviour of IDUs following VCT? Yes / No 24. Provide at least three examples of how to make a service more user friendly for MSM List three ways HIV can be transmitted in prison EVALUTION FORMS

397 Pre- and post training knowledge questionnaire 26. Provide at least two reasons why young people might be at risk of HIV infection What are the three signs that would indicate that a client is at high risk for suicide? Underline only the NO HIV transmission risk method to guarantee that HIV is not transmitted from mother-to-child through breastfeeding. Exclusively breastfed babies Only use breast milk supplement Mix feed a combination of breast milk and supplement to reduce risk of infection Wet nurse (ask another woman to provide breast milk) 29. List three reasons why you might need to refer a client to another service or institution List three advantages of group supervision for counsellors EVALUATION FORMS 375

398 376 EVALUTION FORMS

399 Pre- and post-training knowledge questionnaire: Answer sheet Evaluation Form 2 Pre- and post-training knowledge questionnaire: Answer sheet Code number: 1. List the three routes of HIV transmission. (One point for correct answer) 1. Sexual 2. Exposure to infected blood, blood products, or transplanted organs or tissues: 3. Mother-to-child (infected mother to her infant before, during, or after birth) 2. List three ways HIV is not transmitted. (One point for each correct answer maximum three points) Shaking hands, hugging, touching or kissing, using toilets, swimming pools, sharing eating or drinking utensils, through insects (such as mosquitoes). 3. What do we call the period between when a person becomes infected with HIV and when it is possible to detect HIV antibodies? (One point for correct answer) The window period 4. A person can transmit HIV to someone else as soon as they become infected. (One point for correct answer) True / False 5. What are the two ways to test for the presence of HIV in a person? (One point for each correct answer maximum two points) 1. The HIV antibody test, (which is often just referred to as the HIV test 2. The antigen test (PCR) 6. All babies born to HIV positive mothers will test positive for HIV antibodies at birth. (One point for correct answer) True / False (Infants born to HIV infected mothers will have antibodies to HIV in their serum as a result of maternal-foetal transfer during pregnancy, delivery or breastfeeding but they may not necessarily be infected.) EVALUATION FORMS 377

400 Pre- and post-training knowledge questionnaire: Answer sheet 7. Give two reasons why HIV counselling is important. (One point for each correct answer maximum two points) Prevention counselling and behaviour change can prevent transmission HIV diagnosis has many implications psychological, social, physical, spiritual HIV is a life threatening illness and it is lifelong Counselling can help a person to deal with an HIV positive result Counselling can provide information on other services Counselling can help to address other issues in the client s life which might impact on HIV 8. Someone you see for pre-test HIV counselling tells you they have a partner but had sex with someone else four months ago. They did not use condoms with the other person and want to make sure they did not get HIV. The only other person they have had sex with is their regular partner. They do not use condoms with their regular partner because they trust them. They last had sex with their regular partner two days ago. Should this person have follow up test? (One point for correct answer) True / False 9. In order, what are the four principles of transmission? (One point for correct answer maximum one point) 1. Exit Virus must exit the body of an infected person 2. Survive The virus must remain alive and able to infect 3. Sufficient The virus must be in sufficient quantity to cause infection 4. Enter The virus must be able to enter another s body blood 10. Underline which of the following are the highest risk behaviours for the transmission of HIV: (Award one point for correct answer maximum three points) Sharing needles to inject drugs Kissing A woman getting semen into her mouth Mutual masturbation (male to male) A baby in womb during mother s seroconversion to HIV Mopping up blood spill A man receiving oral sex from a woman Anal sex with ejaculation 378 EVALUTION FORMS

401 Pre- and post-training knowledge questionnaire: Answer sheet 11. List four things that should be covered in a pre-test counselling session. (Award one point for correct answer maximum four points for any of the following) 1. Clinical risk assessment 2. Safe sex and safe injecting information. 3. Personal risk reduction plan 4. Assessment of personal coping strategies if test was to come back HIV positive 5. Basic information about the HIV test meaning of results and the window period. 6. Discussion of any potential negative social and legal issues related to a possible HIV diagnosis. 12. List three ways to show you are listening to a client. (Award one point for correct answer maximum three points for any of the following) 1. Make eye contact 2. Use minimal encouragers (mmmh, ah ah etc.) 3. Summarize (paraphrase) information the client has told you and repeat back to check that you have understood. 13. Name two types of questioning used in counselling and give an example of each. (Give one mark for each correct answer, to a maximum of three) 1. Open questions Example: What difficulties do you have practising safer sex? (The example would probably start with who, what, where, why and require the trainee to give more than a single word response.) 2. Closed questions Example: You do know that you should use a condom, don t you? (The example would be a question that will only get a single word response like yes or no.) 14. When taking a risk practices history with a client who has had an occupational exposure to HIV you should not ask them any questions about their sexual history. (One point for correct answer.) True/ False EVALUATION FORMS 379

402 Pre- and post-training knowledge questionnaire: Answer sheet 15. List four things you should cover when giving someone a negative HIV test result. (Order is not important) (One point for any of the below response maximum of four points) Provide the result and explain the meaning Check for any window period exposure Advise client of any need or date to retest Assist client in solving any difficulties in practising safer sex or safer injecting Suggest partner is tested Reinforce safer sex/injecting issues. 16. What are five things you should cover when giving someone a positive HIV test result? (Order is not important) (One point for any of the below response maximum of five points) Provide the result and explain the meaning Assess for ability to cope with result including suicide risk assessment Assist client in concrete planning (e.g. who to tell, how they will get home from your office, what will they do over the next couple of days) Refer for follow up medical investigations Reinforce safer sex/injecting issues Discuss disclosing HIV status to current or future sexual partners 17. Rapid HIV tests have low sensitivity and may miss identifying and infection. True / False 18. You are using a serial rapid HIV test algorithm on a client. The test comes back HIV positive on one test. You run another test and it comes back positive. Can you report the test to the client as positive? (One point for correct answer.) True / False 19. You are a VCT counsellor. A male client has come for a test today. He admits he has visited sex workers when he goes out of town on business. You later recognise this man to be the husband of a woman attending your daughter s school. This woman has become a friend and you feel you should warn her about her husband s behaviour. As a counsellor, you should warn this woman of her husband s behaviour. (One point for correct answer.) True / False 380 EVALUTION FORMS

403 Pre- and post-training knowledge questionnaire: Answer sheet 20. List three self-care strategies for counsellors. (One point for any of the below response maximum of three points) Any three of the following: Regular exercise Using relaxation techniques Discuss issues with another professional colleague (protecting client s confidentiality) Attend peer support peer supervision group Attend clinical supervision Be organized in your office Keep educating yourself about counselling and HIV 21. Imagine there is a needle stick injury in the hospital. The client is sent to you after the injury. List in correct order from the first thing you should do down to the last one for VCT in the context of the management of occupational exposure (Assume that post exposure prophylaxis is [PEP] is available for occupational exposures amongst health workers). (One point for each correct answer, response must be in correct order maximum five points) First aid Exposure risk assessment and feedback on risk Prophylaxis counselling including informed consent for ARV s Pre-test counselling Blood drawn for baseline 22. When a client discloses a sexual assault what are the first three things you should do before conducting a forensic interview? (One point for each correct answer maximum three points) Ensure clients immediate safety Contact police/authorities (if the client gives you consent to do so) Provide immediate medical care if required 23. Is there any evidence that there is a reduction in risk sexual behaviour of IDUs following VCT? (One point for correct answer) Yes / No The majority of studies show a reduction in risky sexual behaviour of IDUs following VCT. EVALUATION FORMS 381

404 Pre- and post-training knowledge questionnaire: Answer sheet 24. Provide at least three examples of how to make a service more user friendly for MSM. (One point for each correct answer maximum three points) An anonymous service Assures confidentiality Staff who do not make value judgements about behaviours Provides appropriate IEC material; is open at appropriate times such as late at night on at least some nights and on weekends Is located in an accessible area Provides free or low cost HIV and STI testing Provides free or low cost condoms and water-based lubricant 25. List three ways HIV can be transmitted in prison. (One point for each correct answer maximum three points) Sharing of injecting equipment Sexual transmission Tattooing blood brother or group rituals with blunt instruments Poor infection control in custodial medical settings 26. Provide at least two reasons why young people might be at risk of HIV infection (One point for each correct answer maximum two points) Belief in their own invincibility / inaccurate risk perception Lack of ability to negotiate safe sex Difficulty to disclose status to parents, partners etc. Abuse by health service providers. Normal tasks of adolescence Greater peer influence 27. What are the three signs that would indicate that a client is at high risk for suicide? (Any three of the below maximum of three points) Previous history of suicide attempt or thoughts or history of previous self harm Clear plans for suicide able to describe how they would commit it History of significant (high) of drug and alcohol use History of depression Has been on antidepressants (such as Serotonin reuptake inhibitor) Image conscious 382 EVALUTION FORMS

405 Pre- and post-training knowledge questionnaire: Answer sheet 28. Underline the only no risk method to guarantee that HIV is not transmitted from mother-to-child through breastfeeding. (One point for correct answer) Exclusively breastfeed babies Only use breast milk supplement Mix feed a combination of breast milk and supplement to reduce risk of infection Wet nurse (ask another woman to provide breast milk) 29. List three reasons why you might need to refer a client to another service (Any three of the below maximum of three points) Social support Specialized medical care Home-based or community care Legal support Income generation activities Palliative care 30. List three advantages of group supervision for counsellors. (Any three of the below maximum of three points) There is richness in having access to and hearing other people s work For people working in isolated ways the group provides interaction with colleagues and a sense of belonging It allows fuller feedback and reflection of who you are as a counsellor If safe enough, it s the place where you can be authentic, take risks and disclose failure or vulnerability and be helped to do something about it It is possible to receive support and challenge at the same time You can rest as well as be active There is opportunity to learn to supervise others and practice. EVALUATION FORMS 383

406 384 EVALUTION FORMS

407 Pre-and post-knowledge questionnaire: Result sheet Code number Pre-course total score Post-test total score For data analysis Paired sample test Range and standard deviation from mean EVALUATION FORMS 385

408 386 EVALUTION FORMS

409 Evaluation Form 3 HIV Counselling: Training evaluation Please circle the most appropriate response. 1. The training provided me with knowledge to conduct voluntary counselling and testing (VCT) with clients: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 2. The training provided me with skills to conduct VCT with clients: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 3. The teaching methods used were helpful in developing practical skills: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 4. Most of the trainers demonstrated that they knew the material: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 5. Most of the trainers had good presentation skills: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 6. Most of the trainers demonstrated that they had practical experience in HIV counselling: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 7. On a scale of 0 10, to what extent has your knowledge of the following areas changed as a result of the training. (Please indicate your response by placing a cross on one of the numbers). HIV epidemiology / HIV transmission: /....../.../...../....../....../....../....../....../....../....../ Not A little A lot at all EVALUATION FORMS 387

410 Voluntary counselling and testing: /....../.../...../....../....../....../....../....../....../....../ Not A little A lot at all Targeted VCT interventions: /....../.../...../....../....../....../....../....../....../....../ Not A little A lot at all Psychosocial care for client: /....../.../...../....../....../....../....../....../....../....../ Not A little A lot at all Establishing and managing VCT services: /....../.../...../....../....../....../....../....../....../....../ Not A little A lot at all 8. What did you find were the three most useful parts of the training? 9. What did you find were the three least useful parts of the training? 388 EVALUTION FORMS

411 10. List three changes you could implement in your work as a result of completing this training? 11. Is there any other information you would like to have included in this training? 12. Do you have any other recommendations for changes to the training? EVALUATION FORMS 389

412 390 EVALUTION FORMS

413 Evaluation Form 4 HIV Counselling: Trainer evaluation Please circle the most appropriate response. 1. The trainer of this session had good presentation skills: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 2. The trainer of this session demonstrated that they knew the material: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 3. The trainer of this session was able to answer questions from the delegates: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 4. The trainer of this session demonstrated that they had practical experience in HIV counselling: Very much Somewhat Don t know Somewhat Very much disagree disagree agree agree 5. Do you have any other comments about the trainer? EVALUATION FORMS 391

414 392 EVALUTION FORMS

415 Annexure 1 Checklist for planning training 1. Setting the agenda What to do Required on which day of training Date of task completed Remarks Decide training objectives Identify trainees Decide number of training days For 12 days For 5 days Decide day-to-day schedule Identify resource persons Type and print the schedule 2. Accommodation What to do Required on which day of training Date of task completed Remarks Name of the hotel Address Telephone number Fax number Cost per room Single room Double room No. of rooms required Date required: From...To... Transport from hotel to training venue ANNEXURE 393

416 3. Training venue What to do Required on which day of training Date of task completed Remarks Number of training days (12/5) Spacious enough to conduct activities Electrical outlets, lighting, microphone Furniture, availability of photocopy machine, fax, telephone Comfortable seating Wall space for displaying charts Does the venue provide for flip charts, white board, marker pens, projector, computer/laptop Vehicle parking space available Check for break time facilities Tea/Coffee Lunch 4. Provide the training centre/hotel/venue with the following information What to do Required on which day of training Date of task completed Remarks Start and finish time on each day Coffee, tea and lunch break time Contact names and number of senior staff Information on specific requirements Copy of training schedule 394 ANNEXURE

417 5. Letters to be sent to resource persons/trainees should contain What to do Required on which day of training Date of task completed Remarks Name of training programme Objective of training Training schedule Date(s) of training Time Address of venue Contact person name, address, phone number Is confirmation required? Travel directives (information on transport/ payment for travel) 6. Checklist for Training Coordinator What to do Required on which day of training Date of task completed Remarks Resource person s contact number Copy of letters sent Brief note on speaker Thank you note to speaker Extra handouts Activity sheets Activities for ice breaking, energizers, fillers Pre-/Post-knowledge questionnaire Evaluation of training questionnaire Stationery required Pens/pencils Notepad Paper Masking tape Stapler/staples Scissors (contd) ANNEXURE 395

418 What to do Required on which day of training Date of task completed Remarks Scotch tape Two-sided tape Flip cards Index cards Chart paper Transparency sheets Marker pens 7. Audiovisual aids required Item Required on which day of training White board LCD projector Overhead slide projector Computer/laptop Extension cord 8. Preparing for field visit Select site(s) for visit as per guidelines provided in Annexure 3 Arrange for transport Send letters to the centres informing i. Date and time of visit ii. Background and number of participants visiting iii. Objectives of visit iv. Name and contact details of officials visiting the centre with the trainees v. Requirements from the centre 9. On the first day of training Provide information on housekeeping rules Mention ground rules for training Introduce the training team Introduce the trainees Introduce concepts such as question box and parking lot Review training schedule Administer pre-training knowledge questionnaire Provide information on handouts/activity sheets Introduce the concept of trainee summary 396 ANNEXURE

419 10. On each day of training Check for questions in the question box and answer the same at the start of the day or through experts (resource persons). Keep handouts and activity sheets ready. Be prepared with fillers and energizers. Have the nominated trainee summarize the previous day s sessions. Ask for feedback, if any. Send reminders to resource persons for the next day. 11. Final day of training (in addition to the above point 10) Post-training knowledge evaluation Evaluation of training 12. Post-training work Score the evaluation forms Prepare report Submit Statement of Expenditure (SOE), if required ANNEXURE 397

420 398 ANNEXURE

421 Annexure 2 Guidelines for conducting role-plays Overview of the role-play process 1. Divide trainees into groups of three (triads). 2. Each triad nominates a counsellor, a client and an observer. 3. Give the case study to all clients. 4. Role-play the case provided. 5. Debrief within the triad for five minutes. 6. Debrief within small groups of all counsellors, all clients and all observers for 5 10 minutes. Discuss the following: What made clients feel comfortable? What skills were particularly important for counsellors to employ? How did counsellors manage to balance provision of information with being responsive to the needs of the client s emotions? 7. As per number of case studies provided swap roles Counsellors become observers Observers become clients Clients become counsellors 8. Repeat the process until all case studies are completed Implementing HIV Counselling role-plays Ideally, role-plays should be arranged by dividing the trainees into triads. Each triad should nominate a counsellor, a client and an observer. These three roles should be rotated between trainees so that they have an opportunity to experience each role. Accordingly, there should be three rounds of cases with one case being conducted per round. The trainer should hand the cases only to the trainees who are playing a client. The counsellors and observer should not be permitted to read the cases. The trainer should inform clients that ideally they should not share the cases with either counsellors or observers to make the role-play as real as possible. Instructions to be given to each group Counsellors are to practice applying the knowledge and skills learned through the lectures and other activities by completing the nominated task. If during the roleplay become confused or uncertain, they should be instructed to refer to their notes, review their material and re-commence when ready. They should not ask for ANNEXURE 399

422 assistance from their client or observer. If necessary, they should be instructed to put up their hand for assistance from a facilitator. At the conclusion of the roleplay, the counsellor should discuss what they were happy with in their practice and what they would have liked to have done differently. Clients are to play the role of the case outlined in the case study. They should attempt to allow the counsellor to practice obtaining the information rather than simply reading out what is written in the case study. Facilitators should instruct the clients to inform the counsellor if they are role-playing a person of the other gender, e.g. if the trainee is a female and playing a male client she should inform the counsellor that she is playing a male client. Clients should provide feedback to the counsellor at the conclusion of the role-play. Observers are to observe the process of the role-play and provide feedback to the counsellor at the conclusion of the role-play. Observers should be asked to first give positive feedback and then constructive criticism. This helps in increasing confidence and avoiding discontent among trainees. Facilitators should remind observers that they should not interrupt the role-play. Conclusion of each round At the conclusion of each round, five minutes should be allowed for discussion and feedback within the triad. This exercise is to be followed by requesting the class to form three small groups. One small group should comprise all the trainees who played counsellors for that round, another group should comprise all the trainees who played clients and the third group should comprise all the trainees who played observers. A facilitator from among the trainers should be nominated to debrief each small group. One facilitator will debrief the counsellors, the other will debrief the clients and the third will debrief the observers. The small group facilitators should ask the trainees to share their role-play experiences and guide the discussion to the following three questions: What made clients feel comfortable? What skills were particularly important for counsellors to employ? How did counsellors manage to balance provision of information with being responsive to the needs of the client s emotions? The small group debriefing should last no longer than 10 minutes following each round. Trainees should then return to their triads and swap roles. Different case studies should then be provided to the trainees who swap to being counsellors. If only one or two facilitators are available then the debriefing should be performed as one large group following each round. Following the triads debriefing each other, 400 ANNEXURE

423 the trainees should be asked to return to one large group. Trainees should be asked to share their role-play experiences and the discussion should focus on the above three questions. Finally, it is important to remind the trainees that they are in the process of learning. While they may feel overwhelmed at the beginning, each time they use the knowledge and skills they acquire, they will become more confident and improve their abilities. ANNEXURE 401

424 402 ANNEXURE

425 Annexure 3 Guidelines for field visits Field visit should be organized to provide the trainees with hands-on understanding of the operation and day to day functioning of VCT/PPTCT/ART centres. Field visits should include observation of activities at the centre, interaction with staff members and with clients visiting the centre. It should be followed by a debriefing session during which trainees discuss their observations and lessons learnt. Planning and conducting a training field visit by the training coordinator Ideally one month before the training, start to plan and organize the visit to a VCT/ PPTCT/ART centre. 1. Contact one or more centres to gain permission for trainees to visit and meet with staff members. 2. Ideally, if there are several VCT/PPTCT/ART centres near the training venue, the trainees should break up into groups of 5 to 12 people each and visit different sites. Try not to send more than 20 trainees to any single facility. 3. In each centre organize meetings with the following groups: Health-care worker (counsellors, technicians, I/C, nurse and/or physician) Support staff Programme manager and/or clinic director Clients/patients visiting the centre 4. Send confirmation letter to the centres. Once you have permission for the visit from the centre, follow up with a letter confirming the date and timing of the visit and the visit objectives. It may be a good idea to include the following in the letter: A brief description of the training (how many trainees, the disciplines of the trainees, etc.) The training content and how the field visit supports the overall goals of the training The geographic area from which the trainees come Information on how long you expect the visit to last Information on what the centre should share with the visiting trainees Other information you feel the centre should know Consider attaching a copy of the training agenda. The day before the field visit Call the I/C of the centre and reconfirm the visit. Provide important updates on the ANNEXURE 403

426 training that you had not anticipated when you first spoke to them (for example the final number of visitors). On the day of the visit Field visit teams: Divide trainees into teams and assign trainees to the different centres. Select a team leader for each team from among the trainees by asking the team to appoint a team leader. The team leader will be responsible for speaking on behalf of the group, when only one voice is necessary. For example they should ask trainees to introduce themselves, explain the objective of the visit and how long it will take, take the lead on asking questions, ensure that the other trainees in the group have an opportunity to ask their questions, conclude the visit and ensure the staff of the centre are thanked for their time and expertise. The leader should, on no account, dominate the meeting; instead they should simply facilitate, guide the discussion to ensure that it achieves its objectives, ensure that everyone in the group has a chance to speak and ensure that the group keeps to time. Ask the trainees to return to the training room at a predesignated time. The training coordinator should provide 1. The team leader with contact details (name, phone number, location) of the incharge of the centre the team is visiting. 2. The trainees with information on what they should observe during visit. 3. The centres with information they should share with the trainees. Once the team arrives at the VCT/PPTCT/ART centre, the team leader should contact the in-charge of the centre. After introductions, the team leader should initiate the discussion using the following questions as a guide: 1. Describe the flow of clients to your centre. 2. How many clients/patients visit the centre each day? How are they managed? 3. Describe the process on how clients/patients move through the centre from when they enter the centre to the time they receive reports. 4. List the different registers and records maintained. 5. How are records maintained? Where are they stored? 6. Who prepares the monthly reports? Where is data extracted from the monthly report? 7. Describe the role and responsibility of each staff member in the centre. 8. What are the changes the centre has undergone since its inception? 9. Where are the monthly reports sent? 10. What does the centre do with the client data they collect? 11. What linkages and referrals have been set and how? 12. Who supervises the staff and how? 13. Is information, collected on clients, shared with the staff? when and how? 404 ANNEXURE

427 14. Are regular meetings held within the centre? Who attends the meeting, what are the issues discussed in these meetings? 15. In case the counsellor needs help whom do they go to? 16. Is there a DOTS/DMC centre within the hospital? 17. What are the different IEC materials you use? 18. What other monitoring data do you collect (clients satisfaction surveys, information received from staff during review meeting)? How are they used? 19. Are any other test offered at the centre? 20. Is emergency testing performed at the centre? What is the procedure followed? Adapt these questions as appropriate keeping in mind the objective of the field visit. Feel free to re-arrange the questions to allow the discussions to flow and delete questions that seem inappropriate. Try not to ask questions that seem inappropriate. Try not to ask questions that were answered earlier. Information which the team at the centre could share; Clinician (counsellor, nurse and or physician) For how long have they been working with the VCT/PPTCT/ART centre? How many clients/patients visit their centre each day? Describe the client/patient flow at the centre? Share information on forms, records, registers and reports that you complete at the VCT/PPTCT/ART centre. When do they complete these records (eg. when the patient is in front of you or after the clinical visit)? Do they record information for each client/patient? What other reports do each staff member write or contribute to? To whom do they submit the reports/forms? What comments do they have on the process of completing the forms and reports? Do you feel like the effort they put into reporting is worth it? Support staff: Explain their role in the centre What are the records they maintain (if any) What thoughts/feedback do they have around this entire process of running the centre? Programme manager and/or clinic director; Share their responsibility in reference to the VCT/ PPTCT/ART centre. How do they supervise their staff? What VCT/PPTCT/ART reports are they responsible for submitting? Who do you submit them to? Share the most recent report submitted to SACS ANNEXURE 405

428 Do you try to interpret any of the data collected at their centre? What additional information do they get from this data? What do you do with the data here at a local level? Share examples of initiatives they have undertaken using the data from the monitoring process What other monitoring data do you collect? For example do they have clients/ patients? Fill in satisfaction surveys? Do they interview clients/patients to find out about their experience with your service? How do you get monitoring feedback from their staff? Debrief following field visit: Have each team leader summarize observations from field visit. Ask the larger group of trainees if they have any other observations they would like to share or questions to ask. Ask the trainees to prepare a brief action plan on changes they would like to bring about at their centre based on lessons learnt from field visit. After the training is completed It may be appropriate to send a short note to the centre, thanking the in-charge and the staff for their time and readiness to share their experiences. A thank you note is especially important if the training coordinator plans to send further teams of trainees to the centre. 406 ANNEXURE

429 Annexure 4 Bibliography 1. Early neuropsychological impairment in HIV-seropositive intravenous drug users: Evidence from the Italian Multicentre Neuropsychological HIV Study. Acta Psychiatrica Scandinavica 97: It is recommended that countries consider broadening the goals and methods of drug treatment from an abstinence-only goal to encompass treatment and prevention strategies that are more accepting of interim goals. A recommendation of the Task Force on Drug Use and HIV Vulnerability, Drug use and HIV vulnerability policy research study in Asia; UNAIDS/UNODCCP, Aisu T, Raviglione M, Van Prasag E, et al. Preventive chemotherapy for HIV-associated tuberculosis in Uganda: An operational assessment at a voluntary counselling and testing centre. AIDS 1995;9: 9: Anglaret X, Chene G, Attia A. Early chemoprohylaxis with trimethoprim- sulphamethoxazole for HIV-1 infected adults in Abidjan, Côte d Ivoire: A randomised controlled trial. The Lancet 1999;353: 353: Badri M, Wilson D, Wood R. Effect of highly active antiretroviral therapy on incidence of tuberculosis in South Africa: A cohort study. Lancet 2002; 15;359: 359: Benton, Parnell. Facilitating sustainable behaviour change. Burnet Centre (Available from URL: from 7. Burd MC. Assessing HIV-related cognitive impairment among incarcerated chronic substance abusers. [Dissertation abstract]. Dissertation abstracts international: Section B: The Sciences & Engineering. 2001;61 61(7-B):3833. US: University Microfilms International. 8. Burman WJ, Jones BE. Treatment of HIV-related tuberculosis in the era of effective antiretroviral therapy. Am J Respir Crit Care Med 2001;164: 164: Carroll KM, Libby B, Sheehan J, et al. Motivational interviewing to enhance treatment initiation in substance abusers: An effectiveness study. American Journal on Addictions 2001;10: 10: Casey K. HIV counselling in Thailand: The relationship between training, work and locus of Control. University of Wollongong, Australia (in press). 11. CDC. Revised guidelines for counselling, testing and referral, Available from URL: CDC. Technical guidance on HIV counselling, Available from URL: mmwr/preview/mmwrhtml/ htm. 13. Centers for Disease Control and Prevention (CDC). Administration of zidovudine during late pregnancy to prevent perinatal HIV transmission Thailand , MMWR 1998;47: 47:151 3 and UNAIDS/WHO recommendations on the safe and effective use of short-course zidovudine for the prevention of mother-to-child transmission of HIV, Centre for Harm Reduction and Asian Harm Reduction Network (1999) manual.html. (Thai and Indonesian versions can be downloaded. English versions are available in hard copy). 15. Chequer P, Sudo EC, Vitfria MAA, et al. The impact of antiretroviral therapy in Brazil. Abstract MoPpE1066 presented at the XIII International AIDS Conference, Durban, South Africa, Coninx R, Maher D, Reyes H, et al. Tuberculosis in prisons in countries with high prevalence. BMJ 2000;320: 320: ANNEXURE 407

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432 57. Ministry of Health and Family Welfare, National AIDS Control Organisation, Government of India, HIV/AIDS Counselling Training Manual for Trainers, pp and Family Health International (2001), Zimbabwe HIV Counselling Training Manual, pp Minuchin S. Families and family therapy. Cambridge: Massasuchetts, <Harvard University Press; Mitsuyasu RT, Skolnik PR, Cohen SR, et al. Activity of the soft gelatin formulation of saquinavir in combination therapy in antiretroviral-naïve patients. AIDS 1998;12: 12:F MMWR. Update: HIV counselling and testing using rapid tests United States 1998;47: 47: Montaner JS, Reiss P, Cooper D, et al. A randomized, double-blind trial comparing combinations of nevirapine, didanosine, and zidovudine for the HIV-infected patients. The INCAS Trial. Italy, The Netherlands, Canada and Australia Study. JAMA 1998;279: 279: Morar N, Ramjee G. Impact of voluntary counselling and testing among sex workers Abstract C1030, presented at the 13th International Conference on HIV/AIDS, Durban South Africa; Murphy RL, De Gruttola V, Gulick RM, et al. Treatment with amprenavir alone or amprenavir with zidovudine and lamivudine in adults with human immunodeficiency virus infection. J Infect Dis 1999;179: 179: Mwingwa A, Hosp M, Godfrey-Faussett P. Twice weekly tuberculosis preventive therapy in HIV infection in Zambia. AIDS 1998;12: 12: Nelson-Jones R. Practical Counselling and Helping Skills, 2nd ed. Sydney. Holt, Rinehart and Winston; 1988: Nicolosi A, Molinari S, Musicco M, Saracco A, Zilliani N, Lazzarin A. Positive modification of injecting behaviour among intravenous heroin users form Milan and Northern Italy Br J Addict 1991;86: 86: Nunn P, Mungai M, Nyamwaya J, et al. The effect of human immunodeficiency virus type 1 on the infectiousness of tuberculosis. Tubercle Lung Dis 1994;75: 75: O Brien WA, Hartigan PM, Martin D, et al. Changes in plasma HIV-1 RNA and CD4+ lymphocytes counts and the risk of progression to AIDS. N Engl J Med 1996;334: 334: O Connor M (ed). Treating the consequences of HIV. Jossey-Bass: San Francisco; OHCHR. HIV/AIDS and Human Rights International Guidelines Second International Consultation on HIV/AIDS and Human Rights Geneva; Population Services International. New Start VCT Training Manual. Zimbabwe; Prochaska JO, DiClimente CC. The theoretical approach: Crossing boundaries of therapy. Homewood Ill, Dow Jones Irwin; PSI New Start Zimbabwe VCT Training package. The documented has been updated and review for use in South Asia by Dr Ruangpumg Sutthemt from Mahidol University Thailand, Dr Mark Kelly and Kathleen Casey of the International Health Services Unit Albion Street Centre Sydney Australia. 74. Raviglione MC, Harries AD, Msiska R, Wilkinson D, Nunn P. Tuberculosis and HIV: current status in Africa. AIDS 1997;11 11 (Suppl B): S115 S Rieder HL, Cauthen GM, Comstock GW, Snider DE. Epidemiology of tuberculosis in the United States. Epidemiologic Reviews 1989;11: 11: Shaffer N, Chuachoowong R, Mock PA, et al. Short-course zidovudine for perinatal HIV-1 transmission in Bangkok, Thailand: a randomised controlled trial. Lancet 1999;353: 353: Staszewski S, Morales-Ramirez J, Tashima KT, et al. Efavirenz plus zidovudine and lamivudine, efavirenz plus indinavir, and indinavir plus zidovudine and lamivudine in the treatment of HIV-1 infection in adults. N Engl J Med 1999;341: 341: Sumich, H., Andrews, G., Hunt, C. The Management of Mental Disorders Vol. 1. WHO Training and Reference Centre, Sydney; 1995: ANNEXURE

433 79. The VCT efficacy study group. Efficacy of voluntary HIV-1 counselling and testing in individuals and couples in Kenya, Tanzania and Trinidad: a randomised trial. Lancet 2000;356: 356: Towards a Regional Strategy, An Analysis of the HIV Vulnerability of Migrant Workers in and from South Asia. UNDP UNAIDS. Counselling and voluntary counselling and HIV testing for pregnant women in high HIV prevalence countries. UNAIDS/44E; UNAIDS. Knowledge is power. Voluntary HIV counselling and testing in Uganda. UNAIDS/ 99.8E; UNAIDS Prevention of HIV transmission from mother to child. Strategic options UNAIDS/ 40.E; UNAIDS. Opening Up the AIDS Epidemic. Geneva; UNAIDS. VCT Technical update. UNAIDS/WC 2000;503: 503: UNAIDS. Voluntary Counselling and Testing (VCT) UNAIDS Technical Update. UNAIDS Best Practice Collection. Geneva; UNAIDS. The impact of voluntary counselling and testing. A global review of the benefits and challenges UNAIDS Policy on HIV testing and counseling. documents/health/counselling/counselpole.html; UNAIDS, UNESCO. Migrant Populations and HIV/AIDS, UNAIIDS Best Practice Key Material; UNAIDS/UNODC/AHRN Preventing HIV/AIDS Among drug users Case studies from Asia UNDP 2001, Towards a Regional Strategy, An Analysis of the HIV Vulnerability of Migrant Workers in and from South Asia. 92. UNHCR. Prevention and response to sexual and gender-based violence in refugee situations. Inter-agency lessons learned. Conference proceedings. Geneva; March United Nations General Assembly Special Session. Declaration of Commitment on HIV/AIDS. June 2001:19. recognizing that care, support and treatment can contribute to effective prevention through an increased acceptance of voluntary and confidential counselling and testing, and by keeping people living with HIV/AIDS and vulnerable groups in close contact with health-care systems and facilitating their access to information, counselling and preventive supplies. 94. Vanichseni S, Coopanya K, DesJarlais D, Plangsringarm K, Sonchai W, Carballo M, Friedmann P, Freidman S. HIV testing and sexual behaviour among intravenous drug users, Bangkok, Thailand. Journal of AIDS; 1992;5: 5: Vanichseni S, DesJarlais D, Coopanya K, Friedman P, Wenston J, Sonchai W, Raktham S, Carballo M, Freidman S. Condom use with primary partners among injecting drug users in Bangkok, Thailand and New York City, USA. AIDS 1993;7: 7: Velasquez, Mary Marden, Maurer, Gaylyn Gaddy, Crouch, Cathy, DiClemente, Carlo C. Group treatment for substance abuse: A stages-of-change therapy manual. New York: Guilford Press; Voluntary counselling and testing for HIV infection in antenatal care: Practical considerations for implementation. HIS home page Voluntary HIV-1 counselling and testing efficacy study group. Efficacy of voluntary HIV-1 counselling and testing in individuals and couples in Kenya, Tanzania and Trinidad: A randomised trial. Lancet 2000;356: 356: Watters J, Estilo M, Clarke G, Lovrich J. Syringe and needle exchange as HIV/AIDS prevention for injecting drug users JAMA 1994;271: 271: WHO. The importance of simple and rapid tests in HIV diagnostics: WHO recommendations. Wkly Epidemiol Rec 1998;73: 73: ANNEXURE 411

434 101. WHO. Evaluation of simple/rapid tests to determine antibodies to HIV-1 and/or HIV-2 in human whole blood; (in press) WHO SEARO. Planning and implementing HIV/AIDS care programmes: A step-by-step approach. First edition 1998, reprint in 2000 and WHO SEARO. The use of antiretroviral therapy: A simplified approach for resourceconstrained countries; WHO. Acquired immunodeficiency syndrome (AIDS). Interim proposal for a WHO staging system for HIV infection and disease. Wkly Epidemiol Rec 1990;65: 65: WHO. Scaling up: Antiretroviral therapy in resource-limited settings. Guidelines for a public health approach; WHO/UNAIDS. Policy statement on preventive therapy against tuberculosis in people living with HIV. WHO/TB/ UNAIDS/98.34; Wiktor S, Sassan-Morokro M, Grant A, et al. Efficacy of trimethoprim-sulphamethoxazole prophylaxis to decrease morbidity and mortality in HIV-1 infected patients with tuberculosis in Abidjan, Côte d Ivoire: A randomised controlled trial. Lancet 1999;353: 353: Wiktor SZ, Ekpini E, Karon JM, et al. Short-course oral zidovudine for prevention of motherto-child transmission of HIV-1 in Abidjan, Côte d Ivoire: A randomised trial. Lancet 1999;353: 353: Wolffers I. Testing for HIV and Migrant Workers, icaap_hivtesting.html; Zwi A, Cabral AJ. Identifying high risk situations for preventing AIDS. British Medical Journal 1991;303: 303: Glick ID, Berman EM, Clarkin JF, Rait DS. Marital and family therapy. 4th ed. Washington: American Psychiatric Press; Johnson SM. Emotionally focused couple therapy with trauma survivors. New York: Guilford Press; Minuchin S. Families and family therapy. Cambridge, Ma: Harvard University Press; Fazel S, Danesh J. Serious mental disorder in 23,000 prisoners: A systematic review of 62 surveys. Lancet 2002;359: 359: Graipaspong D. Psychiatric disorders among the inmates: A study in the jails in Bangkok Metropolitan and the Bangkwang Central Prison. Journal of Mental Health of Thailand 2002;10: 10: Kantor E. HIV. Transmission and prevention in prisons, HIV insite knowledge-base chapter; Thies PA. Coping with HIV: A study of HIV positive male inmates in a federal prison. Dissertation Abstracts International: Secton B: the Sciences and Engineering. 2000;60:4913, US: Univ Microfilms International Lerwitworapong J. HIV/AIDS and pulmonary tuberculosis in a prison, Thailand. Journal of AIDS Disease (Thailand) 1997;9: 9: Singh S, Prasad R, Mohanty. A high prevalence of sexually transmitted and blood-borne infections amongst the inmates of a district jail in Northern India. International Journal of STD AIDS 1999;10: 10: Beyrer C, Juttiwutikarn J, Teokul W, et al. Drug use, increasing incarceration rates, and HIV risks in Thailand, Abstract MoPeC3396, XVth International AIDS Conference, Barcelona Paul C, Das Gupta S, Sharma S, et al. Awareness, perception and risk behaviours of drug users in the prisons. Abstract WeOrE1323, XVth International AIDS Conference, Barcelona ANNEXURE

435 122. Aumphornpun B, Page-Shafer K, van Grievsven GJP, et al. Risk of prevalent HIV infection associated with incarceration among injecting drug users in Bangkok, Thailand: Case control study. BMJ 2003;7: 7: Raktham S, Kitayaporn D, Vanichseni S, et al. Incaceration as a continuing HIV risk factor among injecting drug users (IDUs) in Bangkok. Mahidol University Annual Research Abstracts UNAIDS. Prisons and AIDS, prispve.pdf; Okochi CA, Oladepo O, Ajuwon AF. Knowledge and sexual behaviours of inmates of Agodi prison in Ibadan Nigeria. International Quarterly of Community Health Education 2000;19: 19: UNAIDS/99.47/E (English original, September 1999). First printed 1993, WHO/GPA/DIR/ Laporte J, Bolinni P. Management of HIV/AIDS related problems: Situation in European prisons. Programme and Abstracts of XII World AIDS Conference, Geneva. Abstract Kantor E. HIV Transmission and prevention in prisons: HIV insite knowledge-base chapter; UNAIDS/99 (English original, September 1999). ANNEXURE 413

436 414 ANNEXURE

437 Annexure 5 List of experts The following experts contributed to the development of this training manual. 1. Dr Sushma Mehrotra P-1A, Hauz Khas Enclave New Delhi [email protected] 2. Professor B.L. Barnes Dr Leo Barnes Foundation Samudraseema 329, Dr B.R. Ambedkar Road Bandra, Mumbai [email protected] 3. Dr Geeta Joshi 18, Nutan Society, M.G. Road Naupada, Thane [email protected] 4. Ms Tasneem Raja Manoshakti, Crisis Intervention Center/ SNDT Women s University 1, Nathibai Thakarsey Road Mumbai [email protected] 5. Dr Romate John Counselling Psychologist Centre for Psychological Counselling Bangalore University Bangalore / (O) (R) [email protected] 6. Dr Sudha Bhogle Professor of Psychology Social Science Block Bangalore University Jnanabharathi Campus Bangalore / (O) 7. Dr Anna Mathew R.M. College of Social Work Paan Maktha, Gachibowli Golconda (O) / (R) [email protected] 8. Dr K. Promodu Department of Psychiatry Calicut Medical College Kozhikode / (Mob.) [email protected] 9. Dr K. Giresh Mental Health Centre Thiruvananthapuram (O) (Mob.) [email protected] 10. Mr Ashok Rao Kavi Hamsafar Trust 10, Rivera, 15th Road Santa Cruz (W) Mumbai ANNEXURE 415

438 11. Mr Srinath Radder ICHAP Pisces Building, #4/13-1, Cresent Road High Grounds Bangalore Dr Anjali Gandhi D-40 East of Kailash New Delhi Dr Uma Ravikumar F3, 2nd Floor, Prime Rose Appartment 15, Ellaiamman Koil St Adyar Chennai Ms Rama Shridhar G-103, Lenyadri Cooperative Society Sector 19-A Plot No. 8/9 Nerul Navi Mumbai (Mob.) 15. Dr Sibnath Dev Department of Applied Psychology Calcutta University Kolkata (O) (O) 16. Ms Anuradha Patil Lecturer Karve Institute of Social Service Karve Nagar Pune (O) (R) 17. Dr Nilima Mishra Professor and Head Department of Psychology Lucknow University Lucknow 18. Dr Archana Shukla Professor, Department of Psychology Lucknow University Lucknow 19. Dr R.K. Lenin Singh Assistant Professor of Psychiatry RIMS Wangkhei Ningthem Pukhri Mapal Imphal Manipur / (O) 20. Dr S. Haque Director and Medical Superintendent Central Institute of Psychiatry Ranchi Professor S.R. Khan Head, P.G. Department of Psychology University of Jammu Baba Saheb Ambedkar Road Jammu Professor U.N. Dash Centre of Advanced Studies, Psychology Utkal University Vani Vihar Bhubneshwer (R) (O) 416 ANNEXURE

439 23. Dr Amool Ranjan Singh Professor and Head Department of Psychology RINPAS Kanke Road Ranchi 24. Dr Neeru Bhatia NACO 25. Ms Rohini Ramamurthy 14/270, Sanghani Sadan Deodhar Road, Matunga Mumbai Dr Shantha Thayumanavan Professor of Microbiology Stanley Hospital Chennai 27. Dr V. Ravi NIMHANS Bangalore 28. Dr Shubhangi Parkar Professor and head Department of Psychiatry G.S. Medical College and K.E.M. Hospital Parel, Mumbai 29. Dr N. Desai Institute of Human Behaviour and Allied Sciences Delhi Ms Trupti Tandon Lawyers Collective HIV/AIDS Division 1st Floor, 63/2 Masjid Road, Jangpura New Delhi Ms Magdalene Jayaratnan 32. Dr Shantibala Department of Psychiatry J.N. Hospital Porompat, Imphal Manipur Dr Arun Gupta National Coordinator BPNIBP-33, Pitampura New Delhi Dr M.M.A. Faridi Professor and Head Department of Paediatrics University College of Medical Sciences GTB Hospital New Delhi Dr M. Bhatacharya Head, Dept of CHA National Institute of Health and Family Welfare New Mehrauli Road Munirka New Delhi Dr Sanjeev Sinha Departmenty of Medicine AIIMS Ansari Nagar New Delhi ANNEXURE 417

440 37. Professor S.K. Sharma Professor and Head Department of Medicine AIIMS, Ansari Nagar New Delhi 38. Dr V.K. Sharma Professor and Head Department of Dermatology AIIMS, Ansari Nagar New Delhi 40. Dr B.B. Rewari Senior Physician RML Hospital New Delhi 41. Mr Binod Mahanty Technical Officer, VCT World Health Organization New Delhi 39. Dr H.K. Kar Consultant STD RML Hospital New Delhi 418 ANNEXURE

441 HIV COUNSELLING TRAINING MODULES Handouts National AIDS Control Organization 9th Floor, Chandralok Building 36 Janpath, New Delhi Phones: , , , , Fax: Website: