How To Evaluate The Prevention Of Mother To Child Transmission Of Hiv In South Africa

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3 An Evaluation of the Prevention of Mother-to-child Transmission (PMTCT) of HIV Initiative in South Africa: Lessons and Key Recommendations WRITTEN BY: Tanya Doherty, Mitchell Besser, Steven Donohue, Nelson Kamoga, Norah Stoops, Louisa Williamson and Ronel Visser REVIEWED BY: Lilian Dudley, Peter Barron, David McCoy and Jaine Roberts September 2003 ISBN#: This publication is also available on the Internet This report has been produced by the Health Systems Trust for the National Department of Health. The research and this report were funded by the National Department of Health (South Africa). Health Systems Trust 401 Maritime House Salmon Grove Victoria Embankment Durban 4001 South Africa Tel: (031) Fax: (031) Web: The information contained in this publication may be freely distributed and reproduced, as long as the source is acknowledged, and it is used for non-commercial purposes.

4 Acknowledgements: This report would not have been possible without the co-operation and support of many individuals in the national and provincial Departments of Health. Provincial and District PMTCT co-ordinators facilitated access to the research sites and were co-operative and supportive of the evaluation. To the many health workers who allowed us to visit facilities and evaluate the programme, your dedication to PMTCT and willingness to share your experiences is deeply appreciated. Individuals from the national Department of Health, especially Dr Nono Simelela and Ms Sesupo Makakole-Nene, have been supportive and have provided valuable input at various stages of the research. We would also like to acknowledge the support received from the HST research sub-committee; namely Dr Zola Njongwe, Professor Craig Househam and Professor Eric Buch. The national PMTCT evaluation and research framework was developed by Dr David McCoy together with the National Department of Health. This framework made provision for two evaluations of the PMTCT programme, a national PMTCT cohort study as well as a number of sub-studies. Dr McCoy s initiation and co-ordination of the PMTCT research studies has been key in ensuring the successful completion of these projects. The efforts of Candy Day and Halima Hoosen in the HealthLink programme in the final review and layout of this report are greatly appreciated. The infant testing component of section 6.3 (Infant Testing and Outcomes) was written by Dr Gayle Sherman, Mr Grant Napier and Dr Wendy Stevens of the Department of Molecular Medicine and Haematology, National Health Laboratory Service and University of the Witwatersrand. Contributions to the section (Management of Information for PMTCT) were received from Louisa Williamson and Norah Stoops of the Health Information Systems Programme, University of the Western Cape. Abbreviations used in this publication: ATICC BFHI CHC CCLO DoH HIV HST HISP IEC ISDS MCWH / MCH MOU NAPWA NGO NVP PHC PMTCT PWA SAINT TAC UNICEF VCT WHO AIDS Training, Information and Counselling Centre Baby Friendly Hospital Initiative Community Health Centre Chief Community Liaison Officer Department of Health Human Immunodeficiency Virus Health Systems Trust Health Information Systems Programme Information, Education and Communication Initiative for Sub-District Support Maternal, Child (and Women s) Health Midwife Obstetric Unit National Association of People With AIDS Non-Government Organisation Nevirapine Primary Health Care Prevention of Mother-to-Child Transmission People living With AIDS South African Intrapartum Nevirapine Trial Treatment Action Campaign United Nations Children s Fund Voluntary Counselling and Testing World Health Organisation Provinces: EC FS GT KZN LP MP NC NW WC Eastern Cape Free State Gauteng KwaZulu-Natal Limpopo Mpumalanga Northern Cape North West Western Cape

5 CONTENTS 1. Executive summary 2. Introduction 3. Methodology and Design 4. Overview of Sites 5. Description of Routine Indicators 6. Key Findings and Recommendations 6.1 Antenatal Counselling and Testing 6.2 Dispensing of Nevirapine to Mothers and Infants 6.3 Infant Testing and Outcomes 6.4 Maternal and Infant Follow Up 6.5 Infant Feeding 6.6 Health Care Infrastructure Human Resources Management 6.7 Scaling up and Integrating PMTCT Initiatives Page Number

6 BACKGROUND TO THE REPORT EXECUTIVE SUMMARY A decision was made by the National Department of Health at the end of 2000 to implement two PMTCT pilot sites in each province of South Africa. Health Systems Trust was subsequently commissioned to evaluate progress with implementation in the pilot sites, and released a report in February 2002 covering the period January to December This second and final evaluation report on the PMTCT pilot sites builds on the previous one, and describes progress made between January and December 2002 in the same 18 pilot sites. This study forms part of the national research framework for the PMTCT programme, and reference is made in sections of the report to work conducted in other components of the overall PMTCT research. The focus of this report is on the performance of the original pilot sites, but attempts are made to describe the process underway in each of the provinces to expand this programme beyond the pilot sites. This evaluation also assesses whether lessons learnt and problems identified from the first evaluation have been addressed. PERFORMANCE OF THE PMTCT PILOT SITES Coverage The 18 PMTCT pilot sites achieved a coverage of approximately 9% (84406/901882) of the total antenatal bookings in the public sector in 2002, which represents the same coverage in these sites as found in The total national coverage for PMTCT exceeds this figure as some Provinces managed to extend PMTCT beyond the pilot sites during this same time period, with KwaZulu-Natal and Western Cape achieving high levels of Provincial coverage. The 9% figure therefore represents a conservative estimate of national PMTCT coverage in South Africa in Voluntary Counselling and Testing (VCT) VCT provides an entry point to the PMTCT programme, and as PMTCT cannot be delivered without effective VCT (including specialised counselling on the implications of PMTCT for both mother and infant), it is assessed as a key component of implementation of PMTCT in the pilot sites. The uptake of HIV testing within the pilot sites has differed greatly, with some sites achieving high uptake and others consistently low uptake. This has influenced overall programme effectiveness in the provinces. The average testing uptake rate across the 18 pilot sites is 56% (46910/84406), a slight increase on the 51% found in the first evaluation period. There are large differences between provinces in the uptake of HIV testing (ranging from 14% to 92%). Several factors were identified which could have contributed to these differences, including access to training, the availability of lay counsellors, and the quality of counselling provided. HIV test results were received by 85% (39733/46910) of women who agreed to an HIV test. This is very encouraging and suggests that rapid tests are being used and that results are most likely available the same day as testing. HIV prevalence The average HIV positive rate amongst pregnant women tested in the pilot sites is 30% (14340/46910), which is the same rate as found in the first evaluation period. This figure is slightly higher than the National HIV sero-prevalence amongst women attending public antenatal services of 26.5% in These two rates cannot be compared as the methods utilised to capture this information were different. The national antenatal sero-prevalence survey is an anonymous, unlinked cross sectional survey, whereas in the PMTCT pilot sites only women who consented to be tested for HIV were included in this data item. In addition, the PMTCT pilot sites were specifically chosen because of their situation in high HIV prevalence areas. 1

7 Dispensing of Nevirapine Nevirapine was dispensed to an average of 55% (7853/14340) of HIV positive pregnant women who booked at the PMTCT pilot facilities during The 2001 evaluation estimated that nevirapine was dispensed to 30% of such women, suggesting an overall increase in dispensing. This is unfortunately an unreliable indicator of nevirapine coverage as nevirapine was dispensed in a variety of facilities and levels of care (antenatal clinics and hospital labour wards) to which these women had access and for which data could not always be accessed. Nevirapine administration to newborns was much higher with 99% (7932/7950) of infants born to HIV positive women in the pilot sites receiving nevirapine. As nevirapine is usually dispensed to the infant in the pilot facility or ward after delivery, this may provide a more accurate reflection of antiretroviral coverage. However, it may also hide missed opportunities as the indicator only includes women who were identified as being HIV positive in labour. Given the low rate of dispensing of nevirapine to women, it is likely that a significant number of women do not disclose their status to labour ward staff. Infant Feeding An average of 58% (4196/7237) of HIV positive women expressed an intention to practice exclusive formula feeding, and an average of 42% (3041/7237) of HIV positive women intended to practice exclusive breastfeeding. These rates differ substantially between provinces and study findings suggest that these differences are influenced by institutional or facility policies and staff training. The finding in most provinces is that formula feeding intention rates have decreased since the first evaluation. In the Free State formula feeding intention rates have decreased from 73% to 36%. In KwaZulu-Natal a similar decrease has been seen from 53% to 41%. The only province showing an increase in formula intention rates across both sites is the Eastern Cape where the rate increased from 62% to 80%. Study findings suggest that the decrease in intentions to formula feed and increase in the intentions to breastfeed are due to more than one factor, including increased infant feeding counselling training during 2002, as well as unreliable supplies of formula to facilities, particularly feeder clinics in certain sites. Infant Follow Up and Infant Testing This cross sectional study was not intended or designed to follow up infants. However, attempts were made to record follow up of infants delivered in these sites during the full period of implementation of PMTCT to identify operational issues related to the ability of services to follow up mothers and infants. Information is provided on follow up but must be interpreted with caution. A cohort study is currently underway to assess vertical transmission and will be reported on separately. A total of 1907 live infants were born to HIV positive women in the sites between April 2001 and March 2002, and were due for follow up visits and testing (9 month and 12 month testing) between January and December Of these a total of 949 infants were tested for HIV in the pilot sites which translates to a follow up rate of 50%. Of these, 18% tested HIV positive. However, this figure cannot be extrapolated to the full cohort, as no information is available on the other 50%, for whom seroconversion could be vastly different for a variety of reasons. No information is available either on infant feeding practices of the infants for whom follow up tests were conducted. 2

8 HEALTH CARE INFRASTRUCTURE Human Resources Counselling Lay counsellors are central to the PMTCT programme. Attempts have been made by all provinces to employ lay counsellors; however, several difficulties have been experienced and some pilot sites remain without counsellors. The employment conditions, remuneration, training and supervision of lay counsellors differ greatly between provinces. Monthly salaries range from R500 to R2900. It is evident from the results that provinces in which lay counsellors are better paid, achieve higher testing uptake rates (e.g. KwaZulu-Natal and the Western Cape). In addition, low counsellor salaries have resulted in high rates of counsellor turnover and the need for constant re-training. Health Worker Training Provinces have adopted various approaches to training health workers on PMTCT. The most widely used approach is the UNICEF/National DoH supported PMTCT and infant feeding counselling course. This is a 5-day residential training course that focuses on infant feeding counselling and filled a gap that other training courses neglected to cover adequately. The Western Cape and the Free State developed an on-site training course focusing on the PMTCT protocol and operational issues. Courses typically last 2 days. This approach enabled more health workers to be trained on crucial operational issues in a short period of time. The main difference between the two approaches is that the UNICEF/National DoH training aimed to develop trainers and infant feeding counsellors whereas the Western Cape and Free state aimed to prepare staff to implement services. Management Information management The move from an intensive research oriented information system for the pilot sites to a limited information system integrated into the national essential primary health care dataset for the expanded programme is proving difficult. Many provinces are still collecting the full research dataset using numerous registers. This has resulted in virtually no data being available outside of the pilot sites as health workers are simply too busy to collect the information. Approval has been given for PMTCT data to be incorporated into the national essential primary health care dataset; however, implementation appears slow. Management of drugs and supplies The evaluation found evidence of disruptions in the supply of test kits, nevirapine and formula milk in some provinces. This was due to a variety of reasons including the separation of PMTCT drugs and supplies from other essential primary level medicines, inadequate district and provincial capacity to manage this procurement, short expiry limits of nevirapine tablets and syrup, and poor quality of one particular type of testing kit resulting in delays when stocks had to be returned to the depots. Nevirapine is currently not on the Essential Drug List. Although registered as a Schedule 4 medicine, it is handled as a controlled substance (Schedule 5) in all facilities offering PMTCT services. This system is time-consuming for health workers, unnecessarily bureaucratic and may limit access to the drug. These problems influenced the number of women who participated in the programme. Greater involvement of the National Health Laboratory Service is needed to ensure regular quality control of rapid test kits. Furthermore, the planning for national antiretroviral treatment should weigh the need for security and documentation against the need for systems that are convenient and simple. 3

9 SCALING UP THE PMTCT PROGRAMME There have been attempts to scale up the PMTCT programme beyond the pilot sites in all provinces. The greatest coverage exists in the Western Cape and KwaZulu-Natal, where comprehensive, phased expansion plans have been developed and additional funding allocated. In other provinces, the focus has remained on improving the functioning of the pilot sites. This has resulted in well-resourced provinces with access to technical and academic expertise, wide NGO networks and strong local government, achieving success and rapid expansion, whilst less resourced provinces continue to struggle to provide a basic service even at the pilot sites. Human resources and facility infrastructure require ongoing investment to provide communities with basic services. This report recognizes that many of the existing challenges to the effective and wide-scale provision of PMTCT should be resolved through strengthening the health system and human resource capacity at various levels. Moreover, a more planned approach to scaling up of the programme would ensure greater sustainability and coverage and allow PMTCT to serve as a vehicle for improving maternal and child health care. KEY CHALLENGES AND RECOMMENDATIONS 1. The pilot sites have demonstrated that it is feasible to implement PMTCT in South Africa, but have also identified numerous operational challenges for establishing and expanding a PMTCT programme under routine health service conditions. These challenges should be addressed as a matter of priority for the pilot sites, particularly those that are not performing adequately. However, these challenges are not insurmountable, and with the necessary leadership, planning and resource allocation, can be addressed to make full expansion of PMTCT in South Africa a reality. 2. Strong leadership and management are needed at both provincial and national levels, to address existing shortcomings in pilot sites, and for expansion beyond these sites. Financial resources were made available by the National DoH to strengthen provincial capacity for PMTCT, but often the appointments made were not at a sufficiently senior level, and many had inadequate technical expertise required for this task. Provinces and National DoH need to address this jointly to ensure that each province has the required dedicated leadership and management capacity to support PMTCT implementation. 3. A clear policy framework and updated national implementation guidelines are urgently needed on key issues such as infant feeding, and infant testing. The evaluation has provided insights into infant feeding choices, availability of free formula at facilities and support systems to promote safe infant feeding. The continued supply of free formula in a scaled up PMTCT programme needs re-consideration at national and provincial levels, with specific attention to issues of equity, duration for which free formula is provided, the quality of counselling provided, effects on the infant feeding practices of HIV positive and HIV negative women and on child health outcomes. 4. Human resource capacity to provide the additional requirements for PMTCT, in particular counselling and testing, and training and support of professional staff, needs to be addressed. The availability of lay counsellors has in several of the pilot sites eased the workload of nurses and improved the uptake of HIV testing amongst pregnant women. National policy is required to clarify the role and responsibilities of, and the employment and remuneration of lay counsellors for HIV care. 5. Completion of the data for the PMTCT pilot sites has been demanding on health service providers, and has not necessarily provided useful data for local management and service delivery. Essential PMTCT data, as approved by NHISSA, should be the only items collected at all facilities. These items should be incorporated into the district health information system, so that it can flow through the same channels as all PHC data. The expanded research data items collected in the 18 pilot sites, should only be collected for specific research purposes, and discontinued once this research has been completed. REFERENCES 1. National Department of Health. National HIV and Syphilis antenatal sero-prevalence survey in South Africa Pretoria, National Department of Health,

10 INTRODUCTION Implementation of a pilot programme for the prevention of mother-to-child transmission (PMTCT) of HIV commenced in early 2001 in South Africa following a National government decision in late A total of 18 pilot sites, two in each of the 9 provinces, were selected using broad criteria including high HIV prevalence, representation of urban and rural health services, and primary and secondary level facilities. These served as research and learning sites to assess the feasibility of implementing this programme more widely. In May 2002, the Constitutional Court of South Africa ruled that nevirapine should be available to all HIV positive pregnant women and their infants, who give birth in any public sector facility. There has subsequently been a gradual and steady expansion of the PMTCT programme beyond the original pilot sites. In February 2002, an Interim evaluation report of the PMTCT pilot programme covering the period January to December 2001, was released by the Health Systems Trust. The interim evaluation focussed mainly on operational challenges involved with the implementation of the pilot sites. The main challenges associated with programme implementation were found to be health systems issues relating to poor infrastructure within the health system. It was emphasised that any expansion of PMTCT activities should occur simultaneously with general health system strengthening, particularly in rural, under resourced areas, to avoid widening the inequities between provinces. This report presents progress during the second year of the pilot programme, over the period January to December 2002, and documents experiences and key challenges associated with the pilot sites, and initial attempts to expand this programme beyond the pilot sites. A focus of this evaluation has been to assess whether the lessons learnt and problems identified in the first evaluation have been addressed. The specific areas of programme functioning that this evaluation covers include: National and provincial leadership and management Human resource management PMTCT training PMTCT programme uptake Information management Infant feeding Maternal and infant follow up This report draws on the experiences of the pilot sites and is specifically structured to highlight the strengths and weaknesses of the provincial programmes in order for best practices to be identified and for the report to serve as a basis for improvement. Specific areas of programme functioning were selected for discussion in order to develop key recommendations. 5

11 AIM OF THE EVALUATION METHODOLOGY AND DESIGN The overall aim of the evaluation was to assess the performance and uptake of the PMTCT programme in the eighteen pilot sites and to describe the processes underway in the provinces to expand the PMTCT programme beyond the original pilot sites. SPECIFIC OBJECTIVES To assess implementation of the components of the programme in the original pilot sites. To assess uptake of the programme components in the pilot sites. To analyse routine information collected in the 18 PMTCT pilot sites. To evaluate PMTCT management at the provincial and national level. To describe progress with the scaling up of PMTCT services in nine provinces. To make policy recommendations to enhance the functioning of PMTCT services. RESEARCH DESIGN The evaluation utilised a cross-sectional design that incorporated both qualitative and quantitative research methods. The evaluation covers the period January to December Data was collected at district, provincial and national levels by one HST staff member and three external consultants. Two of the researchers were also involved in the first evaluation. SAMPLING FRAME In each of the nine provinces one pilot site hospital and one feeder clinic were visited. The same hospital and clinic that were visited for the first evaluation (covering the period January to December 2001) were selected for this repeat evaluation in order to assess progress over time. DATA COLLECTION METHODS Data collection methods utilised in this evaluation included individual interviews, document review, participant observation and review of routine monthly PMTCT data. Two questionnaires were developed for the evaluation, one for the facility level, and the other for the provincial level. The site questionnaire addressed management, training, counselling and testing, antenatal care, infant feeding, monitoring and follow up, procurement of supplies and community involvement. The provincial questionnaire addressed provincial management, information management, plans for expansion of the programme, and expenditure. At the facilities visited, individual interviews were conducted with health care workers (mostly midwives) in contact with antenatal clients, lay counsellors, nutrition advisors, hospital matrons and doctors. Individual interviews were conducted at the provincial level with the HIV director, PMTCT co-ordinator, MCWH co-ordinator and information officers. A review of documentation such as provincial roll-out plans, training plans, and financial reports was also undertaken. In order to ensure standardisation amongst researchers, the same tools were used in all provinces and the same categories of health workers were interviewed across all provinces. 6

12 In order to evaluate national and provincial management of the programme, ongoing participant observation was undertaken through attendance at national and provincial level PMTCT meetings throughout the period of the evaluation. All routine data was collated by consultants from the Health Information Systems Programme (HISP) who were sub-contracted by HST. This data was entered into and analysed using the District Health Information System (DHIS) Software. The research team met on three occasions during the course of the research in order to address issues of quality control and to ensure consistency in the application of the tools and interpretation of findings. In addition, every attempt was made to validate routine provincial data collected by the HISP consultants. This was done through review of registers during site visits and attendance at national steering committee meetings where provincial data was presented. LIMITATIONS OF THE EVALUATION 1. Definitions of expansion differed between provinces and the information collected was not always verifiable. Verifying provincial reports of expansion proved difficult, as the researchers were unable to visit each facility that was considered by the province to be a PMTCT site. Therefore, information provided by the provincial HIV directorates had to be relied on. Furthermore, the definitions of expansion differed from province to province, and this had to be accepted by the researchers. Some provinces considered a facility with supplies of nevirapine to be offering PMTCT whilst others considered a facility to be operational only once lay counsellors were employed, formula supplied and staff trained. 2. The use of routine data for the evaluation also posed problems as there were many difficulties with data quality. Data was collected through registers designed by the National HIV Directorate and in some cases provincial HIV directorates. Registers were completed by health workers at the sites and data was entered by district and provincial information officers. The researchers had little control over the data collection tools, data entry or data flow. Every attempt has been made to correct errors in the data; however, given the constraints raised there may still be some inaccuracies. 7

13 OVERVIEW OF THE PMTCT PILOT SITES *Sites highlighted in blue were visited for this evaluation Province Site East London Complex Frere Hospital and 29 clinics, Cecilia Makiwane Hospital and 19 clinics. Umzimkulu Sub-district Rietvlei Hospital and 12 clinics (many of which are small, isolated, under-resourced and understaffed) Virginia Virginia Hospital and 8 clinics Frankfort Frankfort Hospital and 8 clinics Natalspruit Natalspruit hospital and J. Dumane CHC Kalafong Kalafong Hospital and Pretoria West antenatal clinic Durban King Edward VIII Hospital and Kwamashu Polyclinic, Prince Mysheni Hospital and feeder clinics in section D and K, Umlazi Pietermaritzburg Grey s Hospital, Northdale Hospital and Sabantu and Northdale clinics, Edendale Hospital and Imbalenhle and Taylors Halt clinics, Church of Scotland Hospital, Tugella Ferry. Date PMTCT Services Began July 2001 July 2001 July 2001 August 2001 May 2001 June 2001 June 2001 July 2001 Average number of first antenatal bookings in the pilot sites per month, Average number of first antenatal bookings in the province per month KwaZulu-Natal Gauteng Free State Eastern Cape 8

14 Mankweng Mankweng Hospital and 19 clinics (many of which are small, isolated, under-resourced and understaffed) Siloam Siloam Hospital and 17 clinics (some of which are small, isolated, under-resourced and understaffed). Shongwe Shongwe Hospital and 23 surrounding clinics (many of which are small, isolated, under-resourced and understaffed) Evander Evander Hospital, Lebohang CHC and Embalenhle clinic Thlabane Thlabane Health centre and 4 clinics Lehurutshe Lehurutshe District Hospital and 21 surrounding clinics Galashewe Galashewe Day Hospital, Kimberley Hospital, Masakhane clinic and Roodepan clinic De Aar De Aar Day Hospital, Motana clinic, Amalia clinic, Nomzwakazi clinic and one CHC Guguletu Guguletu MOU and 8 clinics in Nyanga district Paarl Paarl Hospital, T.C Newman CHC and 17 surrounding clinics Aug Service started in 6 clinics. Extended to 13 clinics in December 2001 Mid-Nov 2001 Sept 2001 at Shongwe hospital. Few of the clinics have counselling and testing services due to lack of counsellors October 2001 July 2001 July 2001 August 2001 August 2001 Jan 2001 May Western Cape Northern Cape North West Mpumalanga Limpopo 9

15 DESCRIPTION OF ROUTINE PMTCT INDICATORS PRESENTED IN THIS REPORT Indicator HIV testing rate amongst pregnant women HIV test results received rate HIV positive rate amongst pregnant women tested Formula for calculation Num: Number of pregnant women who have an HIV test Den: Number of first antenatal visits / bookings Num: Number of pregnant women who receive an HIV test result Den: Number of pregnant women who have an HIV test Num: Number of HIV positive test results Den: Number of pregnant women who have an HIV test Definition This indicator measures the proportion of antenatal clients who agree to be tested for HIV. It should also include women tested post partum prior to discharge. This indicator measures the proportion of antenatal clients who are tested for HIV that receive their test results (it includes both positive and negative test results). This indicator measures the proportion of pregnant women who test positive for HIV from amongst those who accept to be tested. Explanatory notes The determination of first ANC visits in urban sites is complex as many cases are referred after booking, thus in some sites, first visits can represent the first time a women accessed testing rather than the first antenatal visit. In terms of policy, HIV testing is only done after pre-test counselling, thus low testing rates may be indicative of poor counselling infrastructure. Although the data in this report indicates a high proportion of test results received, staff were generally concerned about the lack of organisational infrastructure to ensure that women received test results. The prevalence rates amongst women attending the pilot sites are in many instances higher than the rate in the annual antenatal sero-prevalence survey. It is important to note that the pilot sites were selected because they are in high HIV prevalence areas therefore these high rates are not totally unexpected. 10

16 Nevirapine (NVP) dispensing rate to HIV positive pregnant women Num: Number of nevirapine tablets dispensed to pregnant women with HIV Den: Number of antenatal clients testing HIV positive This indicator measures the proportion of HIV positive pregnant women who receive nevirapine. This indicator is a rather inaccurate measure of nevirapine coverage of to pregnant women with HIV. No distinction has been made between NVP dispensed in the antenatal clinic setting and NVP administered in the labour ward setting therefore double counting can occur. The denominator for this indicator is the number of HIV positive test results, however, many of the women who test positive for HIV may not deliver in the same month therefore it is not possible to accurately measure whether nevirapine was actually taken by each HIV positive woman in labour. This indicator is simply a broad measure of nevirapine tablets utilised in the system and it should not be used as a measure of programme effectiveness. The data should be derived from pharmacy inventory records rather than clinic and hospital registers. 11

17 Nevirapine (NVP) dispensing rate to newborns Num: Doses of nevirapine syrup dispensed to newborns of HIV positive women. Den: Number of live births to HIV positive women Breastfeeding intention rate Num: Number of HIV positive women intending to exclusively breastfeed Den: Number of live births to HIV positive women Formula feeding intention rate Num: Number of HIV positive women intending to exclusively formula feed Den: Number of live births to HIV positive women This indicator measures the proportion of newborns who receive nevirapine syrup This indicator measures the proportion of HIV positive women who indicate at the time of discharge that they intend to exclusively breastfeed their infants. This is not a measure of actual practice. This indicator measures the proportion of HIV positive women who indicate at the time of discharge that they intend to exclusively formula feed their infants. This is not a measure of actual practice. It is important to note that this represents treatment coverage only in infants of women who have been identified as being HIV positive, therefore missed opportunities are not included. This rate will be inaccurate when two doses of nevirapine are administered to babies born to mothers that are untreated or inadequately treated or when mothers delivering at home bring their babies to the labour ward or postpartum ward for treatment. In these situations proportions in excess of 100% may be found. Data collected for these elements demonstrated a limited understanding of their use, thus they must be treated with caution Quantitative data collection of intention is of limited value as it is simply a measure of intentions. 12

18 KEY FINDINGS AND RECOMMENDATIONS This section presents the key findings of this evaluation and discussion relating to the main challenges. The topics covered in this section were chosen because they were identified in the provincial evaluations as requiring further exploration and discussion. Where appropriate, examples are drawn from provincial experiences in order to highlight lessons and challenges. Key recommendations are given at the end of each discussion area. 13

19 6.1 Antenatal Counselling and Testing This chapter attempts to highlight the key findings from this evaluation that relate to counselling and testing services for pregnant women and to raise specific areas that require further discussion and in some instances policy guidance. Specific issues relating to lay counsellors will be discussed in a subsequent chapter. The interim evaluation of the PMTCT programme made specific recommendations about counselling and testing for PMTCT. These included: The creation of a cadre of generic lay health workers with standardised employment conditions including fair salaries. The creation of adequate space within facilities for HIV counselling. The broadening of the notion of counselling to include ongoing support beyond the initial period of testing, and the promotion of couple counselling. KEY FINDINGS FROM THE EVALUATION PMTCT Counselling In most of the facilities visited for this evaluation, antenatal clients are introduced to the components of the PMTCT programme during a group information session. All first antenatal clients are therefore informed about the PMTCT programme together. However, in some facilities this is not done, due either to a shortage of staff, or a low client load which allows for individual information sessions. In Limpopo, group information sessions are not given and nurses have argued convincingly that they achieve better communication and testing uptake by concentrating on one-to-one communication. A cause for concern was the finding that group information sessions in many provinces include information on formula feeding. This should not be part of group information to woman prior to testing as it may confuse the general public and undermine breastfeeding practices. Following the information session, in most facilities, individual pre-test counselling is offered and women can decide whether or not to have an individual counselling session. In KwaZulu- Natal individual HIV counselling is seen as compulsory in order for women to make an informed choice regarding HIV testing. The presence of lay counsellors in every facility offering PMTCT in KwaZulu-Natal allows this approach to succeed. The very high uptake of HIV testing in this province may be related to the approach of providing individual counselling to every antenatal client. In many but not all of the facilities offering PMTCT, counselling is performed by lay counsellors. In Mpumalanga, the Eastern Cape, North West and the Northern Cape there are still problems with the employment of lay counsellors. In these provinces, most counselling is performed by nurses with numerous clinical duties. The low uptake of HIV testing in these provinces may be attributable to the lack of lay counsellors. In addition to human resource support for counselling, the physical infrastructure of facilities also impacts on the ability to provide individual, confidential counselling. As with the previous evaluation, this evaluation found large differences between facilities with regard to physical space to perform counselling. In some instances rooms have dual purposes, serving as storerooms and counselling rooms. This results in frequent interruptions during counselling sessions. Table includes one facility from each province with an indication of the numbers of lay counsellors, the numbers of dedicated counselling rooms and the testing uptake rate for Clearly some facilities have insufficient dedicated space for counselling. This has implications for client waiting times and the level of confidence in the ability of a facility to provide a confidential service, both of which impact on decisions to take an HIV test. The table suggests that the availability of space for private counselling influences the rate of testing uptake amongst antenatal clients. In some facilities inadequate space for counselling has led to correspondingly low rates of testing uptake. Facilities with sufficient space appear to achieve higher testing uptake rates although the examples of Church of Scotland Hospital in KZN and Natalspruit Hospital in Gauteng show that a high uptake of HIV testing is possible with constraints on physical space. 14

20 Table 6.1.1: Physical space for counselling Province Facility Average Number of lay number of first counsellors/ nurse antenatal visits counsellors per month Number of dedicated counselling rooms Testing uptake rate, 2002 Eastern Cape Rietvlei Hospital 83 2 nurse counsellors/ no lay counsellors 2 rooms 86% Free State Virginia Hospital lay counsellors Office used for counselling shared with hospital coordinator 58% Gauteng Natalspruit, Hospital lay counsellors 4 rooms 79% KwaZulu- Natal Church of Scotland, Hospital lay counsellors 3 rooms 83% Limpopo Siloam Hospital lay counsellors 2 rooms 57% Mpumala nga Shongwe Hospital 30 2 nurse counsellors/ no lay counsellors 5 rooms 57% North West Lehurutse Hospital lay counsellors 2 rooms 27% Northern Cape Galeshewe Day Hospital (GDH) lay counsellors 4 rooms 42% Western Cape Paarl East Day Hospital lay counsellors 5 rooms 99% HIV Testing Antenatal testing All facilities offering PMTCT services use rapid HIV tests. HIV test results are generally available the same day except in cases of severe staff shortage or stock outs of rapid test kits. Figure 6.1.1: SA HIV testing rate in the 18 pilot sites, % NW EC LP NC FS MP GP WC KZN Average Figure shows the percentage of antenatal clients in the 18 pilot sites who agreed to an HIV test during The average testing uptake rate across the 18 pilot sites is 56% (46910/84406). 15

21 This rate has increased slightly since the first evaluation covering the period January to December 2001 where it was found to be 51%. The graph highlights the large differences between provinces in the uptake of HIV testing (ranging from 14% in the North West to 92% in KwaZulu-Natal). In addition to variation between provinces, much variation exists within provinces. For example in the Eastern Cape, the testing uptake rate in the Rietvlei site is 86% (852/995) whilst the rate in the East London site is 31% (4602/15025). Various reasons were found for the large differences between provinces in testing uptake: The availability of lay counsellors The provinces with the smallest drop off between first antenatal visits and women accepting HIV testing, namely Gauteng, KwaZulu-Natal and the Western Cape, have all prioritised the utilisation of lay counsellors, either by directly employing them or by contracting NGOs to employ them. Provinces with low HIV testing uptake such as the North West (14%) and the Eastern Cape (34%) are still struggling to employ lay counsellors and many of the pilot facilities still rely on nurse counsellors. The counselling strategy adopted in provinces In some provinces women are given the option to receive individual pre-test counselling whilst in other provinces such as KwaZulu-Natal, individual counselling is seen as an integral part of antenatal care and all women receive an individual session with a counsellor. Following this session a woman can decide whether to be tested for HIV. It appears that this approach increases the uptake of testing as it may normalise counselling as a part of antenatal care and not associate it only with testing for HIV. Physical space available for counselling As described above, facilities with insufficient space for counselling appear to have lower testing uptake rates than facilities that do have sufficient space. This infra-structural constraint should not be regarded as a reason not to implement PMTCT in a facility. Strengthening of facility infrastructure should be seen as an ongoing priority to enable effective provision of PMTCT. Distribution and technical support for HIV testing There have been interruptions in the supply of testing kits to many facilities particularly in the Free State, Eastern Cape and Mpumalanga. These interruptions can result in missed opportunities for HIV testing. Much of the procurement of supplies still takes place through the national HIV directorate as they have tenders with specific manufacturers. As the programme expands more rapidly it will be important for districts and sub-districts to procure their own supplies to avoid interruptions in service delivery. There have also been documented false negative results with the Efoora test kit from many facilities. A decision has been taken by the national Department of Health not to renew the tender with the manufacturer of this test kit. As the tender decisions have major implications for delivery of PMTCT in all provinces, a thorough investigative process should be conducted prior to allocation of tenders using the available expertise, and with the involvement of senior managers in the National HIV/AIDS Directorate. Figure 6.1.2: Receipt of HIV test results by clients, % GT NW KZN FS MP EC WC LP NC Average 16

22 HIV test results were received by 85% (39733/46910) of women who agreed to an HIV test. This is very encouraging and suggests that rapid tests are being used and that results are most likely available the same day as testing. The reasons for the large proportion of clients who do not received their test results in Gauteng and the North West should be investigated to determine whether this is related to stock outs of test kits or a particular policy within these provinces. HIV testing in labour and postpartum This evaluation found that very few facilities are offering HIV testing to women in early labour or postnatally. This was found to be due in many cases to personal beliefs of nurses regarding the appropriateness of testing in labour, as well as the lack of lay counsellors in labour and postnatal wards. The National PMTCT Protocol for the pilot states that women who do not attend antenatal care and report to a facility in labour should not have access to antiretroviral drugs because they cannot be adequately counselled and tested. The policy does however recommend early postpartum testing and infant prophylaxis. The policy regarding counselling and testing in labour should be reviewed and postnatal testing should be actively encouraged to prevent missed opportunities for treating infants. Ongoing counselling and support It was clear during this evaluation that PMTCT counselling is focussed around pre- and post- HIV testing and that very little ongoing support is provided. This was due to a lack of human resources and inability to cope with the demands of counselling for HIV testing. Initiatives do exist, such as the Mothers-to-Mothers-to-Be programme described in appendix 6.1, that have developed innovative strategies to provide ongoing support to mothers using resources outside of health facilities. Some facilities have also started support groups, which are dependent on the availability of facilitators and a suitable venue. The involvement of local NGOs in ongoing support appeared minimal at most facilities visited except for the NGO management of facility-based lay counsellors. NGOs can serve as valuable sources of support for home-based care, infant feeding support and ongoing counselling, and their involvement in PMTCT services should be encouraged. KEY ISSUES FOR DISCUSSION Counselling in the context of PMTCT For pregnant women to make informed decisions about reducing their risks of transmitting HIV to their infants, they must know their HIV status. Therefore, counselling and HIV testing is the entry point into the PMTCT programme. Making counselling and testing services available in health centres and clinics is a key PMTCT programme objective. United Nations guidelines 1 recommend that all pregnant women receive voluntary counselling and testing for HIV. Counselling in the context of PMTCT occurs in two phases: Counselling and informed consent for HIV testing Ongoing counselling and information during the antenatal and postnatal period to support infant feeding and other decisions such as disclosing HIV status. Counselling and testing for HIV has traditionally taken place in the context of existing illness as clients are typically referred from services treating STIs, TB or other infectious diseases. In the maternal and child health setting, counselling and testing has the potential to reach large numbers of women who may not already be infected thereby providing an opportunity for prevention through counselling to reduce high-risk behaviours. 17

23 Group education followed by individual pre- and post-test counselling is the model that has been adopted for the PMTCT programme in most settings. The group education session is used in most sites as a way to introduce women to the PMTCT programme and to the option of individual counselling and testing. It has not been determined to what extent this method of giving information may actually discourage women from opting for individual counselling. Following the group education session, women are offered the option of individual counselling. In order to fully integrate the PMTCT programme into maternal health services, there is the belief among some health professionals that counselling should be compulsory and testing voluntary. This approach has already been adopted in KwaZulu-Natal which has a testing uptake rate of 92%. In pregnancy, providing information about HIV testing is not optional. Without information, there can be no informed choice. It is essential to provide information and to assist women to make a decision as to whether to be tested for HIV. Provision of information and counselling to pregnant women about HIV testing should be part of the current standard of care, such as is information and counselling around family planning. Therefore we should refer to this process as counselling and voluntary testing (CVT), which in principle is no different from the informed choices that we give people in any medical care. Support Requirements of Counsellors During interviews with staff involved in PMTCT counselling, the issue of support for counsellors was raised. Very few provinces have implemented measures to provide psychological support to staff involved with HIV counselling. The Western Cape Metro region has committed additional resources to employing professional counsellors to run regular sessions with staff at facilities implementing PMTCT and VCT. KwaZulu-Natal has also employed full time mentors to provide regular support and debriefing for lay counsellors. Where these measures have been taken, they have often focussed on lay counsellors and not nursing staff who in many facilities have to manage large counselling loads in addition to an already heavy clinical workload. Greater attention should be paid to the needs of health workers and counsellors involved in HIV counselling to prevent burn out and high staff turnover. Testing for HIV Rapid ELISA testing is offered as part of the PMTCT programme. This is currently performed by nurses and the results are available within 15 minutes. The average uptake rate for HIV testing in the 18 pilot sites in 2002 was 56%. This meets the World Health Organisation 2 suggested target that at least 50% of pregnant women counselled should be tested for HIV, as part of their recommended routine PMTCT indicators. Although a nationally defined target for the uptake of HIV testing has not been established, any site with a testing uptake rate of >80% can be considered to be doing very well. A testing uptake rate of between 50-80% can be considered to be reasonably good with room for improvement, and a testing uptake rate of below 50% is considered to be unsatisfactory and those sites should be targeted for extra support. Provincial HIV Testing Uptake Rates HIV Testing Rate > 80% 50-80% <50% Provinces KwaZulu-Natal, Western Cape Free State, Gauteng, Mpumalanga Eastern Cape, North West, Northern Cape, Limpopo The above table shows that five provinces have managed to achieve testing uptake rates above the WHO recommended target. 18