UNIVERSITY OF MALAWI. College of Medicine

Transcription

1 UNIVERSITY OF MALAWI College of Medicine Factors Affecting Adherence To Antiretroviral Therapy (ART) Among Children Aged 7-15 Years Attending Queen Elizabeth Central Hospital (QECH) ART Clinic In Blantyre By Lucy Guluka Gawa BSC in Nursing Education and Administration, Diploma in Nursing (MPH/007/008) Dissertation Submitted in Partial Fulfillment of the Requirements of the Master of Public Health Degree June 2011

2 CERTIFICATE OF APPROVAL The Thesis of Lucy Guluka is approved by the Thesis Examination Committee (Chairman, Postgraduate Committee) (Supervisor) (Internal Examiner) (Head of Department) i

3 DECLARATION I, Lucy Guluka hereby declare that this thesis is my original work and has not been presented for any other awards at the University of Malawi or any other University. Name of Candidate: Lucy Guluka Signature: Date: 27th June 2011 ii

4 ACKNOWLEDGEMENTS I wish to express my special thanks to the department of Community Health at College of Medicine for awarding me a scholarship to study MPH at their institution. Secondly, my heartfelt gratitude is due to Professor Cameroon Bowie, Dr Peter Moons for continuously guiding me through the development of research proposal and Professor Victor Mwapasa for valuable contributions, guidance and support throughout the production of this thesis. I am very grateful to my family for being there to encourage and support me during the period of study. I thank Nurse Madalitso Daza for assisting me with data collection, and not forgetting Egnat Katengeza and Emmanuel Singogo for your assistance during data analysis. Your input contributed to the success of this project. I also appreciate the management at Queen Elizabeth Central Hospital for allowing me conduct this research in their institution Above all, I am very grateful to God, the Almighty for keeping me in good health to enable me carryout this research project, to Him be the Glory and Honor for ever and ever. iii

5 ABSTRACT BACKGROUND: The introduction of antiretroviral therapy (ART) has given hope to many people living with HIV/AIDS including children. ART is effective in suppressing HIV replication, decreasing morbidity, and mortality and improving quality of life, therefore adherence to this medication is very crucial [1]. Sustaining adherence represents a significant challenge for children getting treatment at Queen Elizabeth Central Hospital (QECH). STUDY OBJECTIVE: The purpose of this study was to investigate the factors that affect adherence to ART among children attending QECH ART clinic in Blantyre. STUDY METHODS: This was a cross-sectional descriptive study combining quantitative and qualitative methods. An interviewer administered questionnaire was used to collect data in children. Focus group discussions (FGDs) were conducted with caregivers. A systematic sample of HIV-infected children was drawn on daily basis. Quantitative data was analyzed using StataSE 10 whilst qualitative data was coded using Non-Numerical Unstructured Data Indexing, Searching and Theorizing (NVIVO) software (QSR, 2001). Adherence was ascertained by asking patients whether they missed any medication from the previous visit to the current visit, therefore in this study adherence is defined as not missing any dose from the previous visit to the current visit (which is usually two months), according to self reports. RESULTS: Ninety eight children were enrolled in the study, of which 62.3% (61/98) were 100% adherent. Among children who missed doses, the common reason for missing doses was forgetfulness. Adherence to ART was significantly associated with perceived health status (P=0.03, OR=2.1, 95% CI: ) while guardian of child having an occupation or not was marginally associated (P=0.1, OR=2.3, 95% CI: ). The most common strategy used in ensuring an effective ART adherence was a reminder to take the drug by caregivers to their children to take the pill. CONCLUSION: The results for this study showed that over one third of the children in this clinic are not 100% adhering to ART. An adherence programme that will adequately prepare patients and guardians prior to initiating treatment and provision of an ongoing ART adherence support should be developed in the ART clinic. iv

6 TABLE OF CONTENTS Certificate of approval... i Declaration... ii Acknowledgements... iii Abstract... iv Table of Contents... v List of Abbreviation... x List of Tables... ix CHAPTER 1: Background to Study HIV/AIDS Situation in the World HIV/AIDS and ART in Malawi Statement of the Problem Literature Review Definition of Adherence Importance of Adherence Measurement of Adherence Adherence Levels In Africa and Malawi Factors Affecting Adherence Justification of the Study... 7 CHAPTER 2: Study Objectives Broad Objective Specific Objectives... 8 CHAPTER 3: Methodology Study Design Study Setting Study Population Study Period Sample Size Data Collection Data Management and Analysis v

7 3.8 Definitions of Terms Ethical Consideration CHAPTER 4: Study Results Characteristics of Participants Knowledge of Treatment Type and Reason for Treatment Medication Adherence Factors associated with ART Belief in efficacy of Medication Disclosure of Status Adherence Strategies Medication Support Medication Instructions Communication Problems CHAPTER 5: Discussion Study Limitations CHAPTER 6: Conclusion Recommendations Further Research REFERENCES APPENDICES Appendix 1: English Version Informed Consent Appendix 2: Chichewa Version Informed Consent Appendix 3 : English Version Study Questionnaire Appendix 4: Chichewa Version Study Questionnaire Appendix 5: English Version Focus Group Guide Appendix 6: Chichewa Version Focus Group Guide Appendix 7: Approval Letter by Hospital Director (QECH) vi

8 List of Tables Table 1: Characteristics of Participants Table 2: Treatment Type and/or Name Table 3: Reasons for Missed Doses Table 4: Factors Associated with ART Adherence (Univariate analysis) Table 5: Factors Associated with ART Adherence (Multivariate analysis) Table 6: Reasons Why Medication is Helpful Table 7: Reasons for Disclosure and Non-Disclosure of HIV Status Table 8: Adherence Strategies Table 9: Kind of Medication Support Table 10: Medication Instructions vii

9 List of Figures Figure1: Association between Education Level and Adherence viii

10 List of Acronyms AIDS ART ARV COM COMREC FGD HAART HCW HIV MTCT MOH MPH QECH WHO Acquired Immune Deficiency Syndrome Antiretroviral Therapy Antiretroviral College of Medicine College of Medicine Research and Ethics Committee Focus Group Discussion Highly Active Antiretroviral Therapy Health Care Worker Human Immune Deficiency Virus Mother to Child Transmission of HIV Ministry of Health Masters of Public Health Queen Elizabeth Central Hospital World Health Organization ix

11 CHAPTER 1: BACKGROUND 1.1 HIV/AIDS in Sub-Saharan Africa HIV/AIDS is one of the public health challenges in the world. In 2009, it was estimated that over 33.3 million people were living with HIV/AIDS worldwide, with 2.5 million of these being children under 15 years of age. The epidemic is worse in developing countries, particularly in Sub-Saharan Africa, with 22.5 million people living with HIV/AIDS by the end of 2009[2]. Unprotected heterosexual contact is by far the primary mode of transmission of HIV virus in adults while Mother to Child Transmission (MTCT) is the largest source of infection in children below the age of 15 years. Without treatment, 15-30% of babies born to HIV positive women become infected with HIV during pregnancy and delivery. Furthermore, an additional 5-20% becomes infected through breastfeeding [3]. The introduction of antiretroviral therapy (ART) has given hope to many people living with HIV/AIDS, including children. ART is effective in suppressing the replication of HIV, decreasing morbidity and mortality associated with HIV and improving quality of life in adults as well as children [1]. 1.2 HIV/AIDS and ART in Malawi While Sub-Saharan Africa is highly rated on HIV/AIDS prevalence, Malawi through a recent survey conducted in 2007, contributed about people living with HIV/AIDS to the Sub-Saharan African figure., with about , of these being children under 15 years of age [4]. Like other countries in Sub-Saharan Africa, the primary mode of HIV transmission in Malawi is unprotected heterosexual sex, while mother-to-child transmission is the second major mode of HIV transmission. In response to the WHO three by five initiative which aimed to have three million people in developing countries on ART by the end of 2005, Malawi developed a two-year ( ) antiretroviral expansion plan with the goal of delivering free ART to eligible patients throughout the country by the end of 2005[5]. By December 2005, Malawians were ever started on ART 4]. At the end of March 2006 the HIV Unit of the Ministry of Health (MOH) reported 2,718 children (younger than 15 years old) on ART, with the majority of the children (70%) from the southern region, 26.6% from the central 1

12 region and 3.4% from the north[6][7]. Malawi aimed to have started 245,000 patients on ART by the end of 2010[3]. As of 2010, a fixed-dose combination of Stavudine, Lamivudine and Nevirapine (Triomune) was the first-line and standard ART regimen for both adults and children in Malawi [4]. Alternative first line are available for all the patients who develop side effects both for adults and children in all facilities while second line ART are available for patients who have developed treatment failure on first line regimen and are found in referral hospitals and selected district hospital where there is specialized care. 1.3 Statement of the Problem For ART to work effectively, adherence is very crucial. The recommended optimal adherence level for ART to be effective is above 95 percent [8]. Any patient who misses more than 3 dosages in a one month treatment course is considered to have achieved suboptimal adherence which is less than 95% [9]. A level of adherence which is greater than 95% (optimal adherence) suppresses viral replication and prevents the development of resistance and treatment failure. Sustaining adherence presents a significant challenge for children receiving ART treatment at QECH pediatric clinic in Malawi. A preliminary assessment using self report of children aged 7-15 years who were attending the QECH clinic and were prescribed ARVs for a period of two months found that only 56% of children were 100% adherent. The assessment attempted to verify self report with pill count but it was observed that pill count was not very accurate because the nurses were sometimes administering more or less tablets than expected. The assessment also revealed that some children did not adhere because they did not know why they were taking ARV drugs. These findings lend support to the recommendations made by Muula in his study Assessment of equity in the uptake of Anti-retroviral in Malawi to further assess factors affecting adherence since different adherence rates in different areas were revealed from his study in Malawi] [10]. 2

13 1.4 Literature Review Definition of adherence Adherence is defined as the extent to which a person s behavior - taking medication, following a diet, and/or executing lifestyle changes, corresponds with agreed recommendations from a health care provider [11]. Adherence to medication is also known as compliance with medication. The term adherence has become preferred to the term compliance because compliance implies the patient is passively following orders, while adherence implies a treatment plan agreed by both patient and physician.[12]. In the case of pediatric patients this can be applied to both the caregiver s and the child s behavior hence agreement on treatment recommendations is required from both of them 1.42 Importance of Adherence to ART Medication adherence is fundamental to successful antiretroviral therapy. Adherence is a major factor in determining the degree of viral suppression achieved in response to antiretroviral therapy[13].the goals of ARV therapy for children are to increase survival, improve quality of life and decrease HIV-related morbidity and mortality[14]. Some scholars have argued that adherence greater than 95% will ensure a good virologic response and prevent the emergence of viral resistance, therefore impeding the success of the ART program [1] [6] [14]. Thus, there is evidence that failure to adhere to the prescribed treatment regimen is associated with adverse clinical outcomes. Therefore, efforts to improve adherence rates are likely to result in improved health outcomes Measurements of Adherence There are numerous methods that are applied to assess ART adherence. Among the most common are face-to-face interviews or self report and pill count. In face-to-face interviews, the patient is asked about the number of doses missed during a specific period and it is translated quantitatively into a percentage adherence. However, this method has its limitations because patients tend to overestimate adherence [15]. In a study by Liu, adherence as measured by patient interview was found to be considerably higher than adherence as measured by other means, for example pill count [16]. However, self-report is most useful for those patients who admit to poor adherence because such patients truly are non-adherent [15] 3

14 Pill count is done at the clinic, after the patient has brought the pill bottle with him. A healthcare provider counts the number of pills remaining in the bottle and computes the number of missed doses by comparing the difference between the actual and expected number of pills remaining in the bottle. Drawbacks of pill counts include pill dumping, whereby patients dispose off pills to make their adherence appear better than it may actually be [16] Adherence levels in Africa and Malawi Different adherence rates have been reported in various studies in both Africa and Malawi. The rates of adherence varied with study characteristics and method of ascertainment of adherence i.e. individual reports, pharmacy records and pill counting [13] [17]. Some studies have reported that fewer than 50% of children and/or caretakers report 100% adherence to their clinically prescribed regimens [13]. However, others have reported adherence interms of mean adherence rates of greater than 90% [18]. A systematic review and meta-analysis of studies in adults evaluating adherence to ART in sub-saharan Africa and North America reported a combined continent estimate of adherence rates of 64%. The pooled estimate for the North American studies was 55% and for the African studies was 77%, indicating a higher level of ART adherence in Africa [19]. However this review did not state the proportions of people associated with the reported adherence rates. In Malawi, two studies conducted by Medicines San Frontiers (MSF) to assess levels of adherence in Chiradzulu and Thyolo districts also revealed varied levels of adherence. In Chiradzulu they measured the pill count for 367 patients of which (64%) of patients were highly adherent (implying they took medication in the previous four days 100% of their time), 27% were moderately adherent (implying they took medication at least 80% and less than 100% of their time) and 9% were non-adherent (meaning they took medication less than 80% of their time). Using patient self-reporting, 383 (96%) were found to be highly adherent, 8 (2%) were moderately adherent and 16 (4%) were non-adherent. In Thyolo district, out of 151 patients, 99% had at least 95% adherence, using pill count [10]. Another study conducted in Blantyre at QECH ART clinic (before the clinic started providing free ART) assessed 176 patients and found that 52% reported to have 100% adherence never 4

15 having missed a dose. Of those that missed a dose, 43% reported that they had missed medications because of unavailability of medications at the hospital pharmacy, 32% because of lack of money and 27% had forgotten to take medications [20]. Another study conducted by Bell in adult patients, at the same hospital showed complexities of measuring adherence and probable overestimation of adherence by pill count (98.6%) and self report (86.2%) compared to medication event monitoring system (88.1)[21]. In 2004 to 2005, Ellis and Molyneux in their study Experience of Anti-retroviral treatment for HIV infected children in Malawi found that adherence using self report was excellent, better than 95% in >90% of the children[22]. However, this was the only study that looked at adherence in children Factors affecting Adherence Studies conducted in developed countries have revealed various factors affecting ART adherence in children. There are very few studies conducted in Africa and none have been published from Malawi. However, from all these studies, the following factors are revealed Drug Formulation and Complexity When treating HIV infected pediatric patients, fewer options are available, because of the small number of ARV drugs registered worldwide for pediatric use and/or inadequate formulations [23]. This significantly limits the possibility of prescribing drugs that are easy to administer to children. In addition, regimen complexity is another important contributor to poor adherence [24]. This includes the need for daily administration, dietary requirements, dosage and consequently pill burden, and pill taste [13] [25] [26] [27]. However, some studies discovered that adherence was not associated with the complexity or burden of medication regimens despite the fact that most providers often believe this to be a critical barrier to adherence [28] Side effects Studies have revealed that ARV drugs are often discontinued when side effects occur or when they are perceived. Adverse drug events influence willingness to take medication and are consistently associated with poor adherence [24] [28]. In another study by Heyer, patients with adverse events such as dermatological and gastrointestinal symptoms were 12.8 times 5

16 less likely to be % adherent [24] compared with those who did not present with symptoms Beliefs and attitude Parents beliefs and attitudes are among the predictors of ART adherence. Parents beliefs about the seriousness of their childs illness and the medication or treatment, will influence adherence[29]. In addition, the child s attitude towards the drug, his perceptions about the HIV the perceived benefits of the drug play a very important role in adherence. Greater adherence is observed in patients who believe HAART is effective, while negative beliefs reduced adherence [30] Clinical status The current experiences with symptoms and severity of such symptoms in HIV patients are associated with adherence. Studies have revealed that patients who have symptomatic disease or who feel debilitating pain and symptoms are less adherent [28] compared with patients who did not present with any symptom and pain. However, in one study an increasing adherence rate was observed in children with more advanced AIDS [31] Age Age has been identified as a relevant factor to consider when looking at adherence to HAART among HIV patients. Some studies have reported better adherence among older patients whilst others have reported no relationship [28] [30]. However, since children are dependent on their caregivers for the administration of medication, adherence is thus only as good as the caregivers are able to achieve. Other studies have revealed that special issues relating to adherence exist for HIV-infected children and adolescents. It is observed that adherence concerns intensify as children enter into adolescence because of premature responsibility for taking medication, and the developmental and social challenges faced [27] Disclosure of HIV status Disclosure of HIV status is another factor which is believed to have an influence on ART adherence. Some studies have revealed that complete parental disclosure to children helps to motivate HIV-infected children to adhere to their daily medical regimen. It enables children 6

17 to understand HIV infection and to make sense of disease-related experiences and the importance of adherence [32]. However, many caregivers decide not to tell their children that they have HIV disease until adolescence, potentially impeding their cooperation with treatment [27] Costs Studies conducted in Africa revealed that the cost of drugs and related health service are the most significant barriers to adherence. Adherence difficulties related to the financial demands of therapy and inability to afford medicines for varying periods were reported in Botswana and Uganda by both patients receiving subsidized and non subsidized ART[33][34] Provider support A supportive patient-provider relationship is another important factor in improving ART adherence. Studies have reported a positive relationship between provider support and adherence. This involves supporting the patient throughout his treatment, by providing motivation, routine adherence counseling, involving the patient in treatment decisions, open communication, compassion and taking regimen inconveniences into account to improve adherence [29]. 1.5 Justification for the Study In order to facilitate adherence to ART in HIV-infected children, it is necessary to know factors that affect adherence and to explore the possible interventions to improve adherence. In view of this, it was vital that a study be conducted to assess levels of adherence among children on ART and factors associated with adherence at QECH ART clinic. This study would help inform the hospital, MoH and other policy makers in Malawi on ways of improving and/or maintaining adherence to ART in children as access to ARV medicines is being scaled up nationwide. 7

18 CHAPTER 2: STUDY OBJECTIVES The study was designed to achieve the following objectives: 2.1 Broad Objective To explore the factors associated with ART adherence in HIV infected children aged between 7 and 15 years attending QECH ART Clinic. 2.2 Specific Objective a. To estimate the proportion of patients who have adherence 100% to ART over a period of two months b. To ascertain the children s knowledge of their HIV diagnosis and treatment c. To correlate the relationship between diagnostic disclosure and ART adherence. d. To identify the main factors that affect ART adherence including caregivers/children perceptions, beliefs and practices e. To establish the kind of support currently given to infected children under ART 8

19 CHAPTER 3: METHODOLOGY 3.1 Study Design This study used a cross-sectional descriptive study design using both quantitative and qualitative methods. 3.2 Study Setting The study took place at Queen Elizabeth Central Hospital (QECH) which is the largest central hospital in the southern region of Malawi. QECH serves as both a primary contact hospital and a regional referral hospital. The hospital started providing free ART services to HIV infected people in accordance with the national ART guidelines in Currently, the ART clinic provides HIV related services for both adults and children. The pediatric clinic opens twice a week (Mondays and Tuesdays afternoon) whilst the adult clinic opens daily. 3.3 Study Population The study target population was children aged between 7-15 years that were attending QECH ARV Clinic in Blantyre, Malawi. The inclusion criteria for the study were: o Known HIV Positive children o Age between 7 to 15 years old (This age category was chosen because of their capacity to reasonably express their views hence able to participate in this study) o On ART Treatment for not less than 2 months excluding initiation period o Guardian may be biological parent, relative or adoptive caregiver o Willing to provide Consent 3.4 Study Period The study was conducted between March and May The activities that took place during this period include, briefing of research assistant, data collection and data analysis. 3.5 Sample size At the time of the study, the pediatric ART clinic at QECH had 360 patients in the age range of 7 to 15 years registered for ART. To calculate sample size we estimated that only 56% of the patients were adhering 100%, based on a preliminary adherence assessment conducted in 9

20 the clinic. Using this as a point estimate and allowing for a 10% margin of error with 95% confidence, we calculated the sample size to be 98. Since it was difficult for the clinic to come up with a list of HIV infected children expected to come in a particular day from the clinic registry, the researchers attempted to select participants each clinic day through systematic sampling of every second child coming to the clinic. However, due to the clinic set up, patient flow and the turn up of children at their own time, it was difficult to adhere to the sampling method; as a result children who were meeting the criteria were purposively selected and interviewed as they reported to the clinic 3.6 Data Collection Each clinic day during data collection, the researchers with the help from the clinic staff (who were registering and weighing the children) were identifying the potential eligible clients who have reported for the clinic, before they were reviewed by the clinicians. Each child and her guardian were referred to the researchers to be informed about the study and were asked to give an oral consent upon understanding of the specifics of the study. A direct face-to-face interviewer administered questionnaire was used to collect data. The questionnaire had structured and semi structured questions to collect both quantitative and qualitative data. The interview included items on social demographic data, perceived functional health status using a Lansky Performance Scale for children. This scale comprises of indices for the clinical estimate of a person s physical state, performance and prognosis after therapy and for determining patient s suitability for therapy [35]. Other information that was collected during the interviews include; Childs awareness of HIV status, perceptions towards the prescribed ART, missed doses since the previous visit and in the past week, the kind of support a child receives from her/his guardian and what they do to ensure ART adherence. Upon completion of the individual interviews, data was also collected through focus group discussions (FGD) of guardians to triangulate the information obtained from face-to-face interviews. Each clinic day during registration, guardians meeting the inclusion criteria were informed of the FGD and asked to come to the playroom before weighing and reviewing 10

21 their children. When a minimum of 6 guardians was achieved, the FGD was initiated. A total of four FGD (with between 6 and 8 guardians in each group) were done. The discussions were tape recorded to capture all information provided by the participants. Health passport books were reviewed to confirm the patient report on treatment type, dosage and last date of visit. Other clinic records were reviewed to abstract the number of pills given in the last visit for each child to help calculating the number of missed doses during analysis. A nurse from another department was trained to assist in data collection hence the researcher and the trained nurse interviewed a minimum of 12 children each day until the sample size was met. 3.7 Data Management and Analysis The study completed questionnaires and signed consent forms were collected on daily basis. The researcher checked for completeness and accuracy of the forms and put them in order of numbers to be entered into a data base that was created in Microsoft Access. Quantitative data was later imported into STATA for analysis. Descriptive statistics were computed. We examined any association between various variables and ART Adherence amongst participants using a two-sided chi-square test. We first conducted univariate analysis and variables with a p-value <0.20 were later included in the multivariate regression model [36]. We used an interactive backwards elimination approach to come up with final variables as predictor factors of whether a child will miss a dose or not. Variables were included in the predictor model if they were statistically significant at p<0.10 considering that the sample size was small. Qualitative data was managed by transcribing each audio taped FGD into word document. Verbatim transcripts were produced and coded using the Non-Numerical Unstructured Data Indexing, Searching and Theorizing (NVIVO) software (QSR, 2001). After all the transcripts were coded, the codes were examined in detail for sub-themes and patterns across the FGDs to categorize frequently expressed ideas and to highlight factors affecting adherence. 11

22 3.8 Definition of Terms Adherence In this study, adherence was defined as not missing any doses from the previous visit to the current visit (which is usually two months), according to self reports by children and/or guardians. In this view, any person who has not missed the drug since the previous visit is deemed to have adhered 100% as assessed by self report. Non-adherence is therefore defined in this study as missing any dose from the previous visit to the current visit. Any person who has missed any dose will be regarded as having adhered less than 100% while any person missing more than 3 doses in a month will be regarded as having adhered less than 95% Perceived Health Status One of the things on the factors determining adherence that the study looked at is Perceived Health Status. This is defined as an overall perception of child s own health with children reporting to be fully active and normal having a 100% score, while those who reported having minor restrictions in strenuous activity having a score of 90% and 80% score to children reporting being active but tiring more quickly. 3.9 Ethical consideration The research was reviewed and approved by College of Medicine (COMREC). Permission to conduct the study was also sought through the Hospital Director from QECH. Caregivers and their children received information about the study and later an oral consent form was signed by the interviewer indicating that guardians have understood the nature of the study. Oral consent was opted for to accommodate guardians who were not adequately literate to comprehend written consent. To ensure confidentiality of all study participants, no direct identifiers were used in the data collection, storage or report writing. All electronic documents were password protected and all paper documents and tapes were stored in a locked cabinet. We identified three main potential risks associated with this study. First, guardians might have felt uncomfortable discussing the HIV status of their children. Second, there was also a 12

23 potential for distress among some children answering HIV related questions. Third, there could be accidental disclosure of HIV status to the child. However, these were dealt with by training the interviewer on the study protocol. Furthermore, participants responses were made completely anonymous, their identity remained confidential and responses were not linked to their names and address in any way. 13

24 CHAPTER 4: RESULTS 4.1 Characteristics of Participants Table 1 describes the socio-demographic characteristics of the study participants. A total of 98 children were interviewed in the study with almost an equal proportion of both sexes. Almost all the respondents were in school, with the majority in junior primary school. Nearly 90% were on first line treatment. A majority had a score of 100 on perceived health status. About two thirds were under the care of their biological parents with over half of the guardians having an occupation of some kind.. Table1. Characteristics of the Participants Characteristics Frequency Percent (%)* Sex Male Female Weight Mean Weight (SD) 28.2kg (7.5), Age Median age (range) 10.9 (7-15) Education Junior primary Senior primary Junior secondary None Religion Christianity Moslem Other None Perceived Health Status Score 100(Fully active, normal)

25 90(Minor restrictions in strenuous activity) (Active but tires more quickly) Treatment Type First line regimen (Triomune) First line alternative Second line regimen Type of Guardian Biological Mother / Father or Both Granny Brother Sister Auntie Uncle Other Occupation of Guardian Paid Employment Small Scale Business No occupation * For continuous variables, a measure of central tendency and spread was provided instead of percentage. 4.2 Knowledge of Treatment Type and Reason for Treatment All the children (100%) admitted they were taking medication. A majority (92.7%, [90/98]) generally knew the dosage and frequency of the medication. When asked whether they knew the name of the medication they receive, 36.7% (36/98) admitted to knowing the medication while the rest said they did not know the medication. The children who admitted knowing the medication were further asked to mention the name of medication. Impressively, most of the children were able to mention the drug by its name with 69.4%, (25/36) mentioning they receive ARVs. The mean age of children who mentioned the name of the medication was 12.3 SD (2.1) and were mostly from senior primary school. Table 2 gives further details of the names of the medication as reported by children who admitted to knowing their medication 15

26 Table 2: Treatment type and/or Name as mentioned by children Name of medication Frequency Percent ART ARV Alluvia, Abacavir, Didanosine Alluvia, Tenofavir, Duovir Alluvia, Videx, Abicavir Alternative first line Efanvirez Medication for HIV Mphamvu TB Drugs When asked reasons for taking the medication, only 20/36(55.5%) of the children who knew the name of their medication explained that they were taking the drugs because they have HIV/AIDS implying that they knew the reason for taking the medication. Fourteen 14/36 (38.8%) children only knew the name of medication but did not know the reason for taking it, while 2(5.5%) children admitted to know the medication but, surprisingly, they neither knew the medication nor the reasons for the medication. The study also established knowledge of purpose of using antiretroviral from guardians attending focus group discussions (FGD). The most common theme reported was that ARVs are drugs that restore immunity, for example one client reported, ARVs are drugs that are taken to boost immunity if a person who has HIV/AIDS has low immunity. Another common theme that emerged was that ARVs are drugs that prolong life. On this theme one client reported, ARVs are given to people with HIV to prolong their lives... The other themes mentioned were; ARVs are drugs that do not kill the virus and also drugs taken by people with HIV/AIDS. 16

27 4.3 Medication Adherence Based on self reports, 62.3% (61/98) were 100% adherent since the last visit. Of the patients who were not 100% adherent, only 8.6% (2/37) had adherence levels of < 95%. Using a pill count, the findings showed that only 33% (29/88) of the children who were on triomune were 100% adherent. Children admitting missing doses were further asked reasons for missing doses. Qualitative analysis from the children showed that the most common reported reason was forgetfulness. Table 3 below presents other reasons for missing medication as reported by the children. Table 3 Reasons for Missed Doses as Reported by Children Frequency (%) Forgetfulness 21(58.3%) Came late from play 4 (11.1%) Guardian not in the home to give medication 4 (11.1%) Guardian was busy 3 (8.3%) Slept early 2 (5.5%) Rushing to school 2 (5.5%) In order to determine adherence problems, guardians were asked during FGD what their experiences were like when trying to get their children take medication. The most common theme that emerged from the participants was the need for a reminder to take drugs, for example one participant reported, I have to remind my child to take the medication, apart from that I don t have problems. While other children need to be reminded, others remind their guardians to give them medication as stated by one participant, my child reminds me to give her medication. The other common theme reported as adherence problem was forgetfulness. One participant reported, If I am not in good mood I forget to give my child medication The other adherence problems that were rarely reported were; refusing to take drugs, getting sick because of medication, throwing medication away and stigma in the home 17

28 4. 4 Factors Associated with ART adherence Univariate Analysis Showing Factors Associated with ART adherence Table 9 below provides details of factors that were examined for association with adherence among children. Out of 98 children that were interviewed, 61 (62.2%) children reported adherence. In univariate analysis, the only factor that was associated with adherence was perceived health status. Children who perceived their health status as good were 1.8 times more likely to adhere to their medication than those children who perceived their health status as not good. The factors that were marginally associated with adherence were guardian having an occupation P= 0.07) and knowledge of reason for medication 0.08) Table 1: Factors associated with ART Adherence among children from Univariate Analysis Characteristic Adherence level Odds ratio (95% CI) P-value Child age /42(66.6%) Reference /43(58.1%) 1.4(0.6, 3.3) 14+ 8/13(61.5%) 1.3(0.3, 4.5) 0.59 Child Education Junior primary 30/54(55.5%) Reference Senior primary 28/39(71.7%) 0.5(0.8, 3.7) Junior secondary 3/4 (75.0%) 1.2(0.2, 7.8) 0.18 Religion Christian 55/87(63.2%) Reference Non Christians 5/8(62.5%) 1.1(0.2, 4.6) 0.95 Guardian Type Biological mother/father 36/61(59.0%) Reference Granny 11/14(78.5%) 0.4(0.1, 2.4) Other 14/23(60.8%) 0.9(0.2, 3.8) 0.71 Guardian occupation Yes 31/56(55.4%) Reference 18

29 No 30/42(71.4%) 2.2(0.9, 5.2) 0.07** Perceived Health status Not good 13/27(48.1%) Reference Good 47/67(70.1%) 1.9(0.9, 3.5) 0.05 Knowledge of medication name Yes 24/36(66.6%) Reference No 37/62(59.6%) 0.8(0.4, 1.8) 0.56 Knowledge of medication reason Yes 16/20(80.0%) Reference No 45/78(57.6%) 0.4(0.1, 1.2) 0.08** Understanding medication instruction Yes 53/83(63.8%) Reference No 8/14(57.1%) 0.8(0.2, 2.4) 0.63 Communication problems Yes 2/4(50.0%) Reference No 59/93(63.4%) 1.7(0.2, 12.9) 0.59 ** Marginal Significance Perceived Health Status =Overall perception of child s own health With regard to education level, though not significant using univariate analysis, there appeared to be a positive trend between increasing level of education and adherence. Figure 1 below shows the association between education level and adherence. 19

30 Figure 1: Association between Education level and Adherence The figure above shows that as education level was increasing, the proportion of children adhering was also increasing Multivariate Analysis of Factors associated with adherence Basing on univariate analysis in table 4 above, the following variables, with a p-value of <0.20, were considered for multivariable logistic regression models using backward elimination: child education, perceived health status, guardian on occupation and knowledge of medication reason. Table 5, shows that perceived health status was strongly associated with adherence. Thus, after adjusting for guardian on occupation, children who perceived their health status as good were 2 times more likely to adhere to their medication than children who perceive their health status as not good. Table 5: Factors associated with ART Adherence from Multivariate Analysis Characteristic Odds Ratio (95% CI) P Value Guardian on Occupation Guardian with an Occupation Reference Guardian without an Occupation 2.3 (0.9, 5.8) 0.07 Perceived health Status Perceived as not good Reference Perceived as good 2.1 (1.1, 4.1)

31 4.5 Belief in Efficacy of Medication When children were asked if the medication is helpful, the majority 96.9% (95/98) reported that the medication was helpful. These children were further asked to report the reason why they think the medication was helpful.. The reasons given were; not getting sick often 34.1 (29/85), followed by got healed from the illness I had 25.8% (22/85), medication has improved my health 16.4% (14/85), and medication make me strong 9.4% (8/85). However, 13.6% (13/95) did not give the reason why they think the medication was helpful. Table 6 below shows further reasons why children thought the medication was helpful. Table 6: Reason Why Children Think Medication is Helpful Reason Frequency (%) I don t get sick often 29(34.1) Got healed from the illness I had 22(25.8) My health has improved 14(16.4) It makes me strong 8(9.4) It heals me once I have taken it 7(8.2) It prolongs my life 4(4.7) It kills the virus 1(1.2) 4.6 Disclosure of Status With regard to disclosure of HIV status, participants were asked whether they disclosed the child s HIV status. A minority of guardians in the FGD disclosed to their children their HIV status while the rest did not disclose. The most common reason for disclosure was for child to understand reason for medication. Of the guardians who did not disclose, the most common reason for not disclosing was that the child was young and cannot understand reason for medication. Table 7 below shows further reasons for non disclosure as presented by guardians 21

32 Table 7: Reasons for Non-disclosure Reason Frequency (%) Reason for not disclosing Child young/ cannot understand 9(45) Fear of child frustration 5(25) Child may reveal to others 4(20) She is not my biological child 2(10) Guardians were also asked if they had ever experienced accidental disclosure of their children s HIV status; thus disclosure without consent and unintentional as clinician review the child. Only 4 out of 20 of the guardians who did not disclose reported to having experienced an accidental disclosure by the HCW when they have come with the child for treatment. Of these, three understood and accepted the situation together with their children, while one of the guardians was concerned because her child was not happy when she got the news. 4.7 Adherence Strategies Children were asked to explain what they do to ensure that they are taking the drugs according to health providers prescription. Qualitative analysis revealed that a reminder was the most common strategy that is used to take medication.. Further strategies are provided in table 8 below as narrated by children. 22

33 Table 8: Strategies done to ensure ART adherence. Adherence strategy Frequency (%) Guardian reminds me 21(21.4) Remind self 14(14.2) I remind guardian 10(10.2) We remind each other 2(2.0) Look at the time 6(6.1) Follow instruction from HCW 5(5.1) Medication follow breakfast 3(3.1) Medication left near 3(3.1) Medication before everything 2(2.0) Comes home early from play 2(2.0) Take medication together with guardian 1(1.0) Put alarm 1(1.0) Similarly, when participants in the FDG were asked a similar question, a majority of the participants reported that a reminder to the child to take medication as the common strategy to ensure adherence. Other strategies that were rarely reported included; medication first thing in the morning, guardian and child taking medication together, seeking adherence counseling at the hospital when child is refusing drugs, an incentive given to the child and forcing the child to take medication 4.8 Medication Support When children were asked who helped them most in taking medication the past month. The majority of children reported to have been helped by their mothers (45.9%) followed by sister (11.2%), granny (11.2%), auntie (10.2%), father (9.1), self (4.1%), brother (3.1%), uncle (2.0%), foster mother (2.0%) and boarding master (1.0%) 23

34 The study further established the kind of support children receive in the home from these persons. The responses given by children were almost similar to the strategies they use. Table below gives details of type of support children receive from their guardians. Table 9: Kind of Support children receive from Guardians Kind of Support Frequency Guardian reminds me 40 Guardian provides medication 29 Guardian observes me taking medication 4 Guardian counsels and/or advise me 10 She keeps medication for me 4 She calls me to take drugs 3 She breaks medication for me 4 I support myself 4 When guardians were asked during FGD what other kinds of support they give to the children to ensure an effective ART, four major themes emerged from their reports with the most common one being nutritional support and, showing love to the child. Other type of support reported include; providing time for rest and visiting hospital with the child when sick. 4.9 Medication Instruction Understanding of the medication instructions was assessed by asking children to recall the instruction they received from the health care worker (HCW) in the clinic. Of the 97 children who responded, 85.5% (83/97) admitted to understanding the instructions they receive from the HCW. The most common instruction children recalled was not to miss drugs 40.1% (34/83), followed by specifications of their dosage and frequency 27.7% (23/83). Table 10 below presents other medication instructions as recalled by the children. 24

35 Table 10: Medication Instructions as Reported by Children Frequency Not to miss drugs 34 To take the specified dosage and frequency) 23 Missing drugs causes resistant 13 To report of side effects 6 Not to miss follow-up visits 4 To keep drugs safe 4 To eat balanced meals 3 Medication builds immunity 2 To visit the clinic when sick 5 When the same question was asked to guardians, a majority admitted to understanding the medication instructions. Similar responses were reported as follows; to take the specified dosage and frequency, not to miss drugs missing leads to resistance, to report side effects, to give child nutritious food, to visit hospital if child gets sick and that medication is for life. 5.0 Communication Problems When asked if there are any communication problems with their HCW, a minority of the children, 4.1%(4/98) mentioned they have communication problems as follows; the nurses shout at us 1.0% (1/98), the toys given for play disturbs me from listening to instructions 1.0% (1/98) and that the clinic is always full and we go home late 2.0% (2/98). When the similar question was asked to guardians from the FDG, a majority indicated that there were communication problems, with the most common one being shouted at, while a few reported that the clinic is congested. 25

36 CHAPTER 5: DISCUSSION In this study using self reports we found that two thirds 62.3% (61/98) were 100% adherent of their ART since their last visit. Of great concern was that 2(8.6%) of the 37 children who did not adhere were less than 95% adherent and prone to ART resistance. However, the level of non-adherence found in this study is relatively low compared to findings from other studies in children [37] [[38], but it must be noted that the tendency to overestimate adherence using the self-reporting method is well established [17] [15] [25]. As outlined in the background, selfreporting is however, most useful for those patients who admit to poor adherence because such patients truly are not adherent. While the higher levels of adherence to ART were encouraging using self report, a pill count in this study revealed lower levels of adherence. Similar discrepancies were observed in a study in Kampala where lower levels of adherence (72%) were also revealed using pill counts compared with levels (89%) from self report [39]. A pill count method was employed in this study to validate self report. However, it is worth noting that pill count was not possible for 11% (11/98) of the children who were on alternative first line and second line regimen due to the complexity of their regimen and missing records on number of pills dispensed on the last visit. Another weakness of pill count is the inaccuracies in dispensing pills by nurses during the visit for medication refill. This could be one possible factor contributing to the lower levels of adherence using pill count in this study. Coupled to this is a well known drawback of pill count method of pill damage and pill dumping as revealed from literature, in which patients dispose some pills to make their adherence appear better than it may actually be [40][16][25]. However, this study did not include anything on pill dumping hence it is difficult to report the impact this had on the study. More objective measures of adherence such as blood levels of HAART were not possible in this study due to high costs and unavailability of technology to perform such tests in public hospitals, in this case QECH. The most reported reason for missed doses among children who missed their doses found in this study was forgetfulness. This finding is consistent with several studies that have 26

37 documented that forgetfulness is among the most frequently cited reason for missed doses [30] [41] [25] [42]. In this study the multiple reasons for missing doses provide a vivid illustration of the complexity of adherence in the clinic. This has implications not only for our understanding of the etiology of non-adherence, but also for interventions aimed at optimizing adherence. Therefore, health care workers in the clinic should not target at a single cause of non-adherence because they may fail other multiple causes as reported by children. In an adult study by Golin et al an association was found between education level and adherence- where lower educational level was independently associated with having lower adherence [43]. This study similarly showed a relationship between increasing adherence with increasing education level, although not statistically significant this finding suggest that higher education level increases understanding of need for treatment therefore this can be used by the clinic staff as a recipe for adherence education. In this study, perceived health status showed an association with adherence, with children who perceived their health status as good to be more adhering than those who perceived their health status to be not good. This finding is consistent with other studies that documented that patients who did not present with any symptoms or pain were more adhering than those with symptoms [28.] Furthermore, guardian of the child having an occupation showed a marginal association with parents who had an occupation having lower adherence levels compared with those whose parents did not have an occupation ( P=0.07). These results suggest that parents who have an occupation may not have adequate time to look after their children taking medication. While other research found that knowledge of reason for taking ART enables children to understand HIV infection and consequently the importance of ART adherence [32], this study showed similar finding although the association was of marginal significance. This finding suggests the need to inform children the reason for taking ART. Although over one third of the children admitted to know the medication they receive, not all of them correctly mentioned the name or regimen. This implies that children may admit knowing their medication when actually they do not know the medication they receive. When further asked to give reasons for the medication, not all children who mentioned the medication, were able to give a valid reason for taking the medication. About half reported a 27

38 valid reason that they were diagnosed with HIV/AIDS. This finding implies that knowing the medication name in children does not necessarily mean knowing the reason for medication. Furthermore, there was no association shown in the multivariate analysis between ART adherence and knowledge of the medication among children (P= 0.56). The two frequently reported thoughts by guardians about ART were drugs that restores immunity and drugs that prolong life. The findings indicate high level knowledge concerning ART among guardians in this clinic. Despite high level knowledge, guardians are still experiencing some challenges in the clinic since most of their children need a reminder to take medication. Other challenges include guardian forgetfulness, refusing to take drugs, getting sick because of medication, child throws medication away and stigma in the home. This suggests that high level knowledge alone among guardians is not adequate in obtaining an effective ART treatment in children. In order to determine how children are helped to take the medication, the study explored the presence of a person who has helped the child most in taking medication and the kind of support they receive from this person. The study showed that a majority of children in this study had medication helpers who provide different kinds of support to facilitate adherence. It was also encouraging to realize that almost all the children were satisfied with the kind of help they receive from their helpers. As observed from other studies the common type of support mentioned by children was a reminder to take their pills [23] [44]. In this study, children also appreciated having someone to keep their medication, to actually provide medication, breaking medication, observing them taking medication and counseling them. These findings are in line with other studies which recognize significant roles that guardians perform in ensuring ART adherence Although children are receiving support from their guardians, the study revealed that female guardians are dominating in providing this support. Considering the importance of a family and/or relatives as a source of support in taking ART[31], this finding suggest the need to motivate and involve biological fathers and male partners in sharing the responsibility in supporting HIV infected children. 28

39 Devising strategies to promote adherence is very crucial in ART. The primary strategy taken by guardians together with their children to promote adherence in this study was a reminder to take the pill. As noted previously, this was also mentioned by children as the most common type of help they receive from their guardians. The other two strategies include use of incentives and use of alarm. These findings are consistent with other studies and empirically based literature [23] [13] [16]. However the study demonstrated other new approaches as follows; guardian and child taking medication together, medication first thing in the morning and medication left within reach for the child. The findings from this study substantiate the recommendation to use a number of tools to modify behavioral techniques and integrate medication taking into the HIV infected child s daily routine [13]. Disclosure of HIV status by the guardian to the child occurred in only one third of the participants. The reason for disclosure was mainly the guardian wanting the child to know the reason for medication. The same reason was revealed in a study by Waugh et al that mothers felt disclosure enable children to understand their HIV infection and motivate them to take their daily regimen [32]. The other reasons demonstrated in our study were age, whereby as children are growing, disclosure of HIV status becomes inevitable. Furthermore, guardians are also compelled to disclose status if the child keeps asking questions about the medication she is taking. The study suggests the need for further research to look at factors to be considered when disclosing HIV status to an HIV infected child. On the other hand, a majority of guardians did not disclose. The reasons why guardians did not disclose agreed with other findings in the literature [32] [45]. Guardians felt children may not be able to understand HIV infection as such they may reveal this to friends and relatives. While other guardians felt children may not understand, others had fear that the child will be upset and become frustrated that he/she has HIV infection, implying that he/she would understand the infection. Furthermore, a minority did not disclose because the child was not their biological child. Bearing in mind that culturally in Malawi, most families are less inclined to discuss HIV/AIDS issues with their children, this findings underscore the need for open communication between parents/guardians and children. 29

40 A matter for concern was the occurrence of disclosure by health care workers to the child without the guardians consent. This occurred in a minority (only 13.7%) of the guardians in the FGD. All this breach of confidentiality occurred through health professionals when the guardian had come with the child to the hospital. Three quarter of these guardians reported they accepted the situation but were initially concerned with the occurrence. Similar occurrences were observed in an adult study by Chandra where (35%) reported that information regarding their HIV status was disclosed to their friends or family members without consulting them [46]. The findings in this study highlights the need to focus on ethical aspects of HIV related disclosure and adequate health care worker training on counseling as related to HIV to prevent similar occurrences. The study indicated that the majority of children were able to recall some instruction they receive from the clinic, with a few being able to recall instructions related to adherence. Similarly with guardians, a majority recalled the child s specific medication dosage and frequency. These findings disagree with a similar study which found that parents recall of information in the paediatric appointment setting is limited [26]. From our study, parents recall of information was generally good but the information recalled was mostly about the child s dosage and frequency with little information recalled about adherence. This findings may imply that there is no adequate adherence information given to guardians and their children hence it suggest the need for an adherence program in the clinic to enhance adherence knowledge among guardians and children. There was generally a good communication reported in this study between children and Health Care Workers. This would explain the good adherence levels in children who were adhering in this study and therefore supports the recommendation made in other studies [23] [47] that establishment of a good communication relationship between children, families and HCW is important in facilitating adherence. While this was encouraging, a minority of participants (4%, [4/98]) complained that the nurses shout at them. Although this concerned a minority, it may have a negative impact on the medication adherence hence suggests the need for HCW to work towards it and avoid potential barriers to medication adherence in the clinic. 30

41 5.2 Study Limitations Although this study provides insight into the nature of HIV-positive children adherence to antiretroviral medication, there were several significant limitations. First, due to the clinic set up and since children were coming for the clinic at their own time, it was difficult to systematically sample the participants as planned, instead participants were more often purposively selected than systematically selected. Since purposive sampling is not based on the probability theory therefore, the technique may have involved the liking and disliking of the enumerators hence it may have affected the representativeness of the sample results. Second, since the study was using clinic records to abstract information on number of pills given in the previous visit, there were some records (11% [11/98]) that were missing; as a result it was difficult to compute adherence levels using pill count for some children. This was worse with records for children receiving their fist line alternative and second line regimen; hence the results for this study would not precisely reflect the adherence levels for all the children who were in the clinic. We did not have an objective measure of actual adherence for example blood tests, to verify self-report and pill count since both of them had limitations. Thus, a better understanding of the validity of such data is important. However, since literature has shown that self report provides reliable information in soliciting information on missed doses than pill count, therefore patients who admitted missing their doses in this study implied that they had truly missed their drugs. Since this was a cross sectional study adherence was only assessed at a single time point, hence adherence levels found in this study may not be very accurate. A prospective type of cohort study of HIV infected children on ART is worthwhile to understand and evaluate adherence in the clinic. 31

42 Communication bias, recall bias, and the desire to satisfy the interviewers should have also affected the responses and, therefore, should not have precisely reflect adherence levels and factors that determine ART adherence in this study. 32

43 CHAPTER 6: CONCLUSION AND RECOMMENDATIONS 6.1 Conclusion About one third of the children in this study were not 100% adherent to ART. There were a number of reasons for not adhering, with the most common being forgetfulness. This finding may form a basis for improving clinical care of patients by developing an adherence programme that will adequately prepare patients and guardians prior to initiating treatment and provision of an ongoing ART adherence support. Children whose health status was not good in this study had some challenges with adherence compared to those whose health status was excellent. Adherence in this study was not associated with age category, type of guardian, knowledge of medication, belief whether mediation was helpful, understanding of medication instructions and communication problem. It was clear that disclosure of child HIV status was a complex decision to make. A majority of guardians in the study did not disclose to the child HIV status with the most common reason being fear that child is young and will not understand and reveal the status to friends and other relatives. There are a number of strategies used by both children and guardians to promote adherence with the primary one being a reminder to take the pill. 6.2 Recommendation Despite the limitations elaborated above, the following recommendations are made; The child ART clinic should develop an education programme on adherence in order to optimize interventions towards adherence. The programme should target guardians and their children and give them opportunity to explain their concerns and adherence problems. Discussing adherence issues with providers will create more awareness and eventually increasing adherence levels among children. 33

44 In addition to the adherence programme, providers in the clinic should provide motivation talks when clients have come for their medication refill to engage male partners in sharing the responsibility and in supporting the HIV infected children in the homes. Health Care Workers in the clinic should undergo a short training focusing on ethical aspects of HIV related disclosure regarding HIV infected children. This would help in reducing occurrences of disclosure without consent from the guardian of the child in the clinic A multi-method approach that combines feasible self reporting and reasonable objective measures should be adopted in public hospitals inorder to get more accurate adherence levels. Apart from pill count, other objective measures include examining drug blood levels to ascertain adherence levels in patients taking ART. 6.3 Further Research Further research should be done to get guardians perspectives and factors to be considered on disclosure of HIV status to an HIV infected child. Also, it is important that another study be conducted to validate the methods of adherence by using a gold standard such as ARV blood levels. 34

45 REFERENCES 1. Chirag S. Adherence to HAART in pediatric patients infected with HIV: Issues and Interventions. The Indian Journal of pediatrics. 2007; 7(1): Joint United Nations Programme on HIV/AIDS (UNAIDS) and WHO. A report on the global AIDS epidemic [cited 2011, April 13]. Available from: 3. AVERT: Preventing Mother-to-Child Transmission of HIV. [Cited 2008 April 20]. Available from: 4. Ministry of Health. Treatment of AIDS Guidelines for the use of Antiretroviral Therapy in Malawi. 3 rd Edition Ministry of Health. Update on ART scale up. (Unpublished report) HIV/AIDS Unit; Malawi Ministry of Health. Antiretroviral Scale up: update report in Malawi. HIV/AIDS Unit; The Malawi Paediatric Anti-retroviral Treatment Group. Anti- retroviral for children in the routine setting in Malawi. Trans R Soc Trop Med Hygien [serial on the internet] [cited 2008 May 20] 101(5): Available from: 8. Africa network for the care of children affected by AIDS. A hand book of pediatric AIDS in Africa Heyer A, Ogunbanjo GA. Adherence to HIV anti-retroviral therapy part ll: Which interventions are effective in improving adherence? SA Fam Pract. 2006; 48(9):

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50 International Child Health [serial on the internet]. 2007[cited 2008 April 26]; 27(2), Available from: Orell C, Bangsberg DR, Badri M, Wood R. Adherence is not a barrier to successful antiretroviral therapy in South Africa. AIDS. 2003; 17: Walsh JC, Horne R, Dalton M, Burgese AP, Gazzard BG. Reasons for non-adherence to antiretroviral therapy: patients perspectives provide evidence of multiple causes; Watt MH, Maman S, Golin C, Earp JE, Eng E, and Bangdiwala et al. Factors associated with self reported adherence to antiretroviral therapy in Tanzania setting. AIDS Care. 2010; 22(3): Golin CE, Liu H, Hays RD, et al. A Prospective Study of Predictors of Adherence to Combination Antiretroviral Medication. J Gen Intern Med. 2002; 17(10): Murphy DA, Johnstone K, Hoffman D, Molina A. Barriers and successful strategies to antiretroviral adherence among HIV infected Monolingual Spanish speaking patients. AIDS Care. 2003; 15(2), Naeem-Sheik A, Glenda G. HIV disclosure in children. The Southern African Journal of HIV Medicine; Chandra PS, Deepthivarma S, Manjula V. Disclosure of HIV infection in South India: Partens, reasons and reactions. AIDS Care. 2003; 15(2) Martin LR, Williams SL, Haskard KB, Dimatteo MR. The Challenge of patient adherence. Therapeutics and Clinical Risk Management. 2005:1(3)

51 APPENDIX I: CONSENT FORM- English Version Participant Consent Form (To be read to participant by Interviewer) FACTORS THAT AFFECT ADHERENCE TO ANTIRETROVIRAL THERAPY (ART) IN CHILDREN AGED 7-15 YEARS ATTENDING QECH ART CLINIC IN BLANTYRE Background and Purpose It is observed from the clinic statistics that almost half of the children who are taking ART do not adhere to treatment. With this observation, this study is set to explore the factors that determine ART adherence in children aged between 7-15 years attending our clinic. I would like to ask your child some questions about her/his own experiences as regards to the treatment she/he is taking. From our records we have seen that your child is one of those children aged between 7-15 so we are inviting him/her to participate in this study. Description of procedure Your child will be interviewed in private and he/she will be asked some questions concerning his/her treatment. We will ask to see your child s medical charts to examine pill count and to confirm the child s report. Risk and Inconveniences Risks attached to this study are minimal, if any. Your child may feel uncomfortable answering some of the questions since they are personal. However, the questionnaire responses will be completely anonymous and your child s identity will remain confidential since it will not be linked to his/her name or address in any way. If at any time your child feels uncomfortable, she/he may refuse to answer any question and can leave the interview at any time. Benefits The information gathered in this Study will help identify ways that would maximize adherence levels to ART in children hence improving the ART services in the clinic. Voluntary Participation Participation is voluntary. You and your child do not have to participate in this study if you do not want to. There are no consequences of any kind if you decide you do not want to participate. Confidentiality, Your interview and study responses will be kept confidential; available only to the research team for analysis purposes. Any personal identification will be omitted so that you and your child will not be identifiable. Notes from the interviews will be stored in a locked cabinet. All information gathered in this study can be made available to you upon request. Questions This study has been approved by College of Medicine Research and Ethics Committee.. If you have any questions about this study I will be happy to answer them now. 41

52 Do you agree to participate in the study? YES NO Signature of Interviewer Printed name Date 42

53 APPENDIX II: CONSENT FORM- Chichewa Version Participant Consent Form Chichewa Version (To be read to participant by Interviewer) FACTORS THAT AFFECT ADHERENCE TO ANTIRETROVIRAL THERAPY (ART) IN CHILDREN AGED 7-15 YEARS ATTENDING QECH ART CLINIC IN BLANTYRE Cholinga Cha Kafukufuku Zolembera zathu kuno ku chipatala cholandira ma ARV zikuonetsa kuti pafupifupi theka la ana amene akulandira mamkhwalawa sakutsatira ndondomeko zoyenera za kamwedwe ka mamkhwalawa. Ndichifukwa ichi, kafukufukuyu wapangidwa ndicholinga chofufuza zinthu zimene zimapangitsa ana azaka pakati pa 7 ndi 15 zakubadwa kutsata ndondomeko zoyenera za kamwedwe kamankhwalawa kuno ku chipatala chathu. Ndikufuna ndifunse mwana wanu mafunso okhudzana ndi chithandizo cha mamkhwala amene akulandira. Zolembera zathu zikuonetsa kuti mwana wanu ndi mmodzi mwa ana azaka zapakati pa 7 ndi 15 ndichifukwa ichi ali woyitanidwa kulowa nawo mu kafukufuku. Ndondomeko ya kafukufuku Mwana wanu afunsidwa mafunso mwa chinsinsi aza kamwedwe kamankhwalawa. Tiona makalata a mwana wanu olandilira makhwala kuti tione mapilitsi ake otsala ndiangati ndi kutsimikiza zomwe mwana wanu atiuze. Zovuta Palibe zobvuta zazikulu zilizonse zokhudza kafukufuku ameneyu. Mwina mwana wanu akhoza kukhala womangika kuyankha mafunso ena womwe ndimufunse. koma ndikutsimikizireni kuti mayankho onse omwe mwana wanu andiyankhe asungidwa mwachinsinsi ndipo palibe zinthu zomwe zimuzindikiritse kapena kukuzindikiritsani inu ku mayankho omwe aperekedwe. Koma ngati mwana wanu angasowebe ntendere kuyankha mafunso amenewa ali womasuka kusayankha. Phindu Mayankho omwe mutipatse athandiza kupeza njira zopititsa patsogolo kamwedwe ka mamkhwala motsatira ndondomeko zoyenera kwa ana komanso kupititsa patsogolo chinthandizo cha ma ARV chimene ana athu amalandira kuno kuchipatala. Kutenga mbali mosakakamizidwa Kutenga nawo mbali mukafukufuku ameneyu sikokakamiza. Inu ndi mwana wanu muli ndi ufulu kutenga mbali kapena kusatenga mbali mukafukufukuyu. Palibe chowopsya chomwe mungakumanenacho ngati mungasankhe kusatenga mbali. Chinsinsi Kukambirana kwathu ndi mayankho onse zikhala za chinsinsi, zongodziwika kwa ena mwaanthu okhaokhawo akuyendetsa nawo kafukufukuyu. Chili chonse chimene chingathe kupangitsa anthu ena kukuzindikirani monga dzina lanu kapena la mwana wanu tidzachisunga mwachinsisi. Zolembera za kafukufuku ameneyu zidzasungidwa mwa chinsinsi mukabathi imene ili ndi makiyi. Ndipo ngati mudzafuna kudziwa zotsatira za kafukufukuyu muli woloredwa kutero. Mafunso Kafukufuku ameneyu wavomelezedwa ndi bungwe lovomereza a kafukufuku laku College of Medicine. Ngati muli ndifunso lokhudza kafukufukuyu ndiri wokondwa kukuyankhani tsopano. Kodi inu ndi mwana wanu muli wolora kutenga nawo mbali mu kafukufuku ameneyu? Inde Ayi Signature of Interviewer Printed name Date 43

54 APPENDIX III: QUESTIONNAIRE - Questionnaire ID. Informed Consent ID PART A: INFORMATION ABOUT THE PARTICIPANT Address of participant: Date of last visit. /../.. Gender Male Female 1. What is your age? 2. Do you attend school? Yes No (If yes go to question 4) 3. In which class are you?.. std1-5 (Junior Primary School) std 6-8 (Senior Primary School) form1-2 (Junior Secondary School) form 3-4 (Senior Secondary School) 4. What is your religion? Christian Moslem other specify 5. What is the relationship with your guardian? Father Mother Granny Other specify. Is the guardian working? Yes No If yes, mention type of work PART B: INFORMATION ABOUT THE TREATMENT 6. Are you taking any medication? Yes No 44

55 7. What is the name of the medication that you receive every month in this clinic? Does the child know? Yes No 8. How many times do you take the medication per day? Does the child know? Yes No 9. How many pills do you take per dose? Does the child know? Yes No 10. Can you explain to me why you are taking this medication?. Does the child know? Yes No 11. Do you think that the medication you are taking is helpful? Yes No Can you explain your answer in 11?. Q12. How do you perceive your health status? Rate Child s Health Status (compared to other children of the same age): (Tick One only) Fully active, normal Minor restrictions in strenuous physical activity 80 - Active, but tired more quickly than other children his/her age Greater restriction of play and less time spent in play activity. 45

56 60 -Up and around, but active play minimal; keeps busy by being involved in quieter activities Lying around much of the day, but gets dressed; no active playing participates in all quiet play and activities Mainly in bed; participates in quiet activities 13. What type of problems do you face when trying to take the medication according to prescription? 14. How many doses have you missed since the last time you came to collect the medication? 15. How many doses did you miss the past week? 16. How many tablets are remaining in your bottle at present (interviewer to verify by counting the tablets) What is the reason for missing the dose? What do you do to ensure that you are taking the drugs according to the health provider s prescriptions? 19. Who has helped you most to take the medication in the past month at your home? Mother Father Brother Sister Other Specify 20. What kind of support do you get from him/her?. 46

57 21. Tell me your level of satisfaction with the support you receive? Satisfied Some how satisfied Not satisfied 22. Do you understand the medication instructions you receive from your nurse? Yes No If yes, please tell me some of the adherence instructions you get from the health provider. 23. Do you have any problems in communicating with your health care provider in relation to your treatment? Yes No If yes, mention the problems. 47

58 APPENDIX IV: QUESTIONNAIRE (CHICHEWA VERSION) Questionnaire ID. Informed Consent ID PART A: MBIRI YA WOFUNSIDWA MAFUNSO Komwe mumakhala Mamuna Mkazi 1. Muli ndi zaka zingati?? 2. Mumapita ku sukulu? Inde Ayi (If yes go to question 4) 3. Muli kalasi yanji?.. (categorise the answer into primary or secondary education) Primary Secondary 4. Ndinu a chipembedzo chiti? Christian Moslem other specify 5. Kodi pali ubale wanji ndi amene amakuyanganirani? Bambo anga Mayi anga Agogo anga Ena nenani. PART B: MBIRI YA CHITHANDIZO CHOMWE MUKULANDIRA 6. Kodi mukumwa mamkhwala aliwonse? Inde Ayi 7. Kodi dzina la mamkwala amene mumalandira kuchipatala kuno ndichiyani? 48

59 8. Kodi mamkhwala amenewa mumamwa kangati patsiku? 9. Ndimapiritsi angati amene mumamwa nthawi iliyonse imene mukumwa mankhwalawa? Does the child know Yes No 10. Kodi mungafotokozeko zifukwa zimene mumamwera mamkhwala amene mumadzatenga kuchipatala kuno?. Does the child know Yes No 11. Kodi mukuganiza kuti mamkhwala amene mukumamwawa ndiothandiza? Yes No Tafotokozani yankho lanu Q12.Lanksy Scale Kodi nthanzi lako liri bwanji? Sankhani chiganizo chomwe chikuyimira nthanzi lanu (chongani yankho limodzi lokha) Kutha kupanga zinthu zoyenera pa nsinkhu wake 90 - Kutha kupanga zinthu mwanphanvu komabe zina ayi 80 - Kutha kupanga zinthu zoyenera pa msinkhu wake koma kumatopa nsanga kusiyana ndi ana a msinkhu wako 70 - Kudziletsa kusewera, kukhala nthawi yochepa kusewera 60 - Kumatha kuyendayenda koma kulephera kusewera ndi mphamvu 50 -Kumangogona nthawi zina, koma kutha kudziveka malaya, ndikusewera nawo masewera ofewa 40 -Kumangogona nthawi zambiri, ndikusewera nawo masewera ofewa 49

60 13. Kodi ndi mavuto anji amene amakupangitsani kuti mulephere kumwa mamkhwala motsatira malangizo amene mumapatsidwa kuno ku chipatala? 14. Kodi mwaphonya kangati / ndi nthawi zingati zimene simunamwe mamkhwala anu kuchokera ulendo womaliza womwe mudabwera kudzatenga mamkhwala? 15. Nanga ndi nthawi zingati zimene simunamwe mamkhwala sabata yathayi? 16. Kodi mwatsala ndi mapiritsi angati mubotolo mwanu panopa.(ofunsa mafunso awerengenso mapiritsiwo) Nanga ndi zifukwa zanji zimene zinakupangitsani kuti musamwe mamkhwalawa? Kodi ndi zinthu ziti zimene mumapanga kuti zikunthandizeni kumamwa mankhwalawa motsatira malangizo amene mudauzidwa ndi adokotala kapena anamwino? 19. Ndi ndani kunyumba kwanu amene wakunthandizani kwambiri mwezi wathawu kuti inu mumwe mamkhwalawa? Mayi Bambo Achimwene Achemwali Ena ndani 20. Ndi chithandizo chotani chimene mumalandira kuchokera kwa munthu ameneyu?. 21. Tandiuzanu, kodi kunkhutira kwanu ndikotani ndi chithandizo chimene mumalandirachi? Ndili wokhutira Ndili wokhutira pangono Ndili wosakhutira 22. Kodi malangizo amamkhwalawa, amene adokotala/nurse anu amakupatsani, inu mumawanvetsetsa? Inde 50

61 Ayi Ngati mumamvetseta, tandiuzani ena mwamalangizo amene mumawuzidwawa? 23. Kodi mumakumana ndivuto liri lonse po kambirana za chithandizo chamamkhwala omwe mukulandirawandi adokotala/nurse anu? Inde Ayi Ngati alipo tafotokozani?. 51

62 APPENDIX V: Focus Group Discussion Question Guide Introduction Good morning/afternoon/. My name is Lucy Gawa, I am a student at College of Medicine. One of the requirements for my studies is to do a research. Looking at our clinic data, it is showing that almost half of the children in this clinic are not adhering to the ARV drugs. In view of this, I am conducting a study on factors that affect adherence to antiretroviral therapy (ART) in children aged 7-15 years attending QECH ART Clinic here in Blantyre. I will be guiding the discussion and make sure everybody has a chance to speak. Please remember, you are the experts and we are here to learn from you. Please be honest in your answers, don't tell us what you think we might want to hear. Tell us your honest views, whatever they are. This is my colleague _Madalitso Daza. She will be tape recording the discussion, because we don t want to miss any of your comments. No one outside of this room will have access to these tapes and they will be destroyed after our report is written. Before we go further, we should all introduce ourselves. Please tell us your name and where you live. Discussion Guideline We would like the discussion to be interactive, so there s no need to wait for us to call on you to respond. In fact, we encourage you to respond directly to the comments other people make. But Please don't interrupt anyone and try to give everyone a chance to speak and if you are not saying much, we may call on you directly, please don t feel bad about it; it s just our way of making sure we obtain everyone s perspective and opinion. If you don t understand a question, please let us know. We are here to ask questions, listening, and make sure everyone has a chance to share. Are there other rules we would like to add? If need any assistance, please feel free to ask.

63 QUESTIONS 1. As already said today we are here to talk about HIV Medication. What comes to your mind when you hear about HIV medication? 2. Tell me; what it s like to get your children to get their medication accordingly? 3. Looking at the experiences mentioned above, tell me, what are the things that you do to improve your children taking the medication (ART) accordingly? 4. Each of us needs some kind of support when we are ill. Please explain to me the kind of support that you give to your children to ensure a successful ARV treatment. 5. Tell me please, if anyone of you has ever disclosed to his/her child his/her HIV status? If yes, explain to me what was the reason for disclosing? If no, what is the reason for not disclosing? 6. Sometimes it may be possible to disclose the child s HIV status accidentally. Have any of you experienced that? If yes, please tell me; a. what was your reaction like? b. what was the reaction of your child like? 7. There are some instructions given each time we are receiving medication. Explain to me please whether you understand the HIV medication instructions you receive from your service provider? 8. Please explain to me how do you communicate with your health care provider on issues of your child s treatment. liii

64 APPENDIX VI : Focus Group Discussion Question Guide (Chichewa version) Introduction Moni nonse. Muli bwanji? Dzina langa ndine Lucy Gawa ndimaphunzira ku College of Medicine. Ndikupanga kafukufuku kuti tione ndizinthu ziti zimene zimalepheretsa ana athu azaka pakati pa 7 ndi 15 kumwa mamkhwala a ma ARV motsatira malangizo kapena ndondomeko zoyenera zimene adawuzidwa kuno kuchipatala cha QECH. Kafukufuku ameneyu wapangidwa chifukwa zolembera zanthu zikuwonetsa kuti ntheka la ana athu amene akumwa mamkhwalawa sakutsatira malangizo omwe adauzidwa. Ndikhala ndikutsogolera zokambiranazi ndipo ndiwonetsetsa kuti aliyense wapatsidwa mwayi wokambapo maganizo ake. Kumbukirani kuti inu ndiye akatswiri amutu umene tikhale tikukambirana ndipo tiri pano kuti tiphunzire kuchokera kwa inu. Chonde tiwuzeni maganizo owona okhaokha. Awa ndi anzanga a Madalitso Daza akhala akujambura pa tepi zokambirana zathu chifukwa sitikufuna kuti tiphonye chilichonse chazomwe tikambirane. Palibe wina aliyense wakunja amene apatsidwe matapewa kuti akamvetsere zokambirana zathu ndipo tikadzamaliza kuwagwiritsa ntchito matape wonse tidzawaphwanya. Tisadapitilire, tidziwane kaye. Chonde mutiuze dzina lanu ndikumene mumakhala. Ndondomeko ya Zokambirana Tikufunitsitsa kuti aliyense atenge mbali pa zokambirana zathu, ndichifukwa chimenechi simuli woyenera kudikilira kuti tikutchuleni dzina lanu kuti munene maganizo anu. Ndipo, mulikulimbikitsidwa kutsira ndamanga kumaganizo amene anzanu anene. Koma chonde musadule anzanu pamene akunena maganizo awo, yesetsani kupatsa aliyense mpata kuti ayankhula. Koma ngati simudziyankhula kapena kitsira ndemanga, ife tidzitchula dzina lanu kuti muyankhule ndipo tikatero inu musakhumudwe, imeneyi ndi njira imodzi yowonetsetsa kuti titenge maganizo awina aliyense. Ngati simunamvetsetse funso lililonse, chonde tidziwitseni. Tiri pano kufunsa mafunso, kumvetsera ndikuwonetsetsa kuti aliyense ali ndi mwayi wopeleka maganizo ake. Pali mfundo zina zomwe mungafune kuwonjezera zothandizira kuti zokambirana zathu ziyende bwino? Ngati mungafune chithandizo chili chonse, chonde muli womasuka kufunsa. liv

65 QUESTIONS 1. Monga tafotokoza kale, lero tiri pano kukambirana za mamkhwala a ma ARV. Kodi inu mumaganiza chiyani mukamva za mamkhwala a ma ARV? 2. Tandiuzani kodi zimakhala bwanji pamane mukuwanthandiza ana anu kuti amwe mamkhwala malingana ndimalangizo akuchipatala? 3. Ndimomwe mwafotokozeramu, tandiuzani ndi zinthu ziti zimene mumapanga kuthandiza ana anu kuti azimwa mwankhwala motsatira malanzizo akuchipatala? 4. Aliyense mwa ife amafuna chithandizo chapadela akadwala. Chonde tandiuzani ndi chithandizo chanji chimene mumawapatsa ana anu kuwonetsetsa kuti akumwa mankhwala motsatira malangizo akuchipatala. 5. Tandiuzani ngati mmodzi mwa inu adawuzako mwana wake za nthupi mwake momwe muliri (kuti ali ndi kachirombo ka HIV/AIDS). Ngati mudamuwuzako ndi chifukwa chiyani, tafotokozani? Ngati simudamuwuzeko ndi chifukwa chiyani tafotokozani? 6. Nthawi zina zikhoza kutheka kumuwuza mwana wanu mwangozi zotsatira za magazi ake. Kuti ali ndi kachirombo ka HIV. Alipo mwainu amene zinamuchitikirapo? Inde Ayi Ngati zinakuchitikirani tandiuzani; a. kodi inu mudatani? b. Kodi mwana wanu adatani? 7. Pali malangizo amene amapelekedwa nthawi zonse tikamalandira mankhwala kuchipatala. Tandifotokozerani chonde ngati inu mumanvetsetsa malangizo amankhwala amene mumalandira kuchokera kwa adokotala/nurse anu. 8. Chonde tandiuzani kodi mumatani mukafuna kukambirana ndi a nurse nkhani zokhudza mankhwala amene mwana wanu akulandira. lv

66 APPENDIX VII: Approval Letter from QECH lvi

67 lvii