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An Evaluation of the Prevention of Mother-to-child Transmission<br />

(<strong>PMTCT</strong>) of HIV Initiative in South Africa:<br />

Lessons <strong>and</strong> Key Recommendations<br />

WRITTEN BY:<br />

Tanya Doherty, Mitchell Besser, Steven Donohue, Nelson Kamoga, Norah Stoops, Louisa<br />

Williamson <strong>and</strong> Ronel Visser<br />

REVIEWED BY:<br />

Lilian Dudley, Peter Barron, David McCoy <strong>and</strong> Jaine Roberts<br />

September 2003<br />

ISBN#: 1-919743-75-8<br />

This publication is also available on the Internet<br />

www.hst.org.za<br />

This report has been produced by the <strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong> for the National Department of<br />

<strong>Health</strong>. The research <strong>and</strong> this report were funded by the National Department of <strong>Health</strong> (South<br />

Africa).<br />

<strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong><br />

401 Maritime House<br />

Salmon Grove<br />

Victoria Embankment<br />

Durban 4001<br />

South Africa<br />

Tel: (031) 307 2954<br />

Fax: (031) 304 0775<br />

Email: hst@hst.org.za<br />

Web: http://www.hst.org.za<br />

The information contained in this publication may be freely distributed <strong>and</strong> reproduced, as long<br />

as the source is acknowledged, <strong>and</strong> it is used for non-commercial purposes.


Acknowledgements: This report would not have been possible without the co-operation<br />

<strong>and</strong> support of many individuals in the national <strong>and</strong> provincial Departments of <strong>Health</strong>. Provincial<br />

<strong>and</strong> District <strong>PMTCT</strong> co-ordinators facilitated access to the research sites <strong>and</strong> were co-operative<br />

<strong>and</strong> supportive of the evaluation. To the many health workers who allowed us to visit facilities <strong>and</strong><br />

evaluate the programme, your dedication to <strong>PMTCT</strong> <strong>and</strong> willingness to share your experiences is<br />

deeply appreciated. Individuals from the national Department of <strong>Health</strong>, especially Dr Nono<br />

Simelela <strong>and</strong> Ms Sesupo Makakole-Nene, have been supportive <strong>and</strong> have provided valuable input<br />

at various stages of the research. We would also like to acknowledge the support received from<br />

the HST research sub-committee; namely Dr Zola Njongwe, Professor Craig Househam <strong>and</strong><br />

Professor Eric Buch.<br />

The national <strong>PMTCT</strong> evaluation <strong>and</strong> research framework was developed by Dr David McCoy<br />

together with the National Department of <strong>Health</strong>. This framework made provision for two evaluations<br />

of the <strong>PMTCT</strong> programme, a national <strong>PMTCT</strong> cohort study as well as a number of sub-studies.<br />

Dr McCoy’s initiation <strong>and</strong> co-ordination of the <strong>PMTCT</strong> research studies has been key in ensuring<br />

the successful completion of these projects.<br />

The efforts of C<strong>and</strong>y Day <strong>and</strong> Halima Hoosen in the <strong>Health</strong>Link programme in the final review<br />

<strong>and</strong> layout of this report are greatly appreciated.<br />

The infant testing component of section 6.3 (Infant Testing <strong>and</strong> Outcomes) was written by Dr Gayle<br />

Sherman, Mr Grant Napier <strong>and</strong> Dr Wendy Stevens of the Department of Molecular Medicine <strong>and</strong><br />

Haematology, National <strong>Health</strong> Laboratory Service <strong>and</strong> University of the Witwatersr<strong>and</strong>.<br />

Contributions to the section 6.6.2 (Management of Information for <strong>PMTCT</strong>) were received from<br />

Louisa Williamson <strong>and</strong> Norah Stoops of the <strong>Health</strong> Information <strong>Systems</strong> Programme, University<br />

of the Western Cape.<br />

Abbreviations used in this publication:<br />

ATICC<br />

BFHI<br />

CHC<br />

CCLO<br />

DoH<br />

HIV<br />

HST<br />

HISP<br />

IEC<br />

ISDS<br />

MCWH / MCH<br />

MOU<br />

NAPWA<br />

NGO<br />

NVP<br />

PHC<br />

<strong>PMTCT</strong><br />

PWA<br />

SAINT<br />

TAC<br />

UNICEF<br />

VCT<br />

WHO<br />

AIDS Training, Information <strong>and</strong> Counselling Centre<br />

Baby Friendly Hospital Initiative<br />

Community <strong>Health</strong> Centre<br />

Chief Community Liaison Officer<br />

Department of <strong>Health</strong><br />

Human Immunodeficiency Virus<br />

<strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong><br />

<strong>Health</strong> Information <strong>Systems</strong> Programme<br />

Information, Education <strong>and</strong> Communication<br />

Initiative for Sub-District Support<br />

Maternal, Child (<strong>and</strong> Women’s) <strong>Health</strong><br />

Midwife Obstetric Unit<br />

National Association of People With AIDS<br />

Non-Government Organisation<br />

Nevirapine<br />

Primary <strong>Health</strong> Care<br />

Prevention of Mother-to-Child Transmission<br />

People living With AIDS<br />

South African Intrapartum Nevirapine Trial<br />

Treatment Action Campaign<br />

United Nations Children’s Fund<br />

Voluntary Counselling <strong>and</strong> Testing<br />

World <strong>Health</strong> Organisation<br />

Provinces:<br />

EC<br />

FS<br />

GT<br />

KZN<br />

LP<br />

MP<br />

NC<br />

NW<br />

WC<br />

Eastern Cape<br />

Free State<br />

Gauteng<br />

KwaZulu-Natal<br />

Limpopo<br />

Mpumalanga<br />

Northern Cape<br />

North West<br />

Western Cape


CONTENTS<br />

1. Executive summary<br />

2. Introduction<br />

3. Methodology <strong>and</strong> Design<br />

4. Overview of Sites<br />

5. Description of Routine Indicators<br />

6. Key Findings <strong>and</strong> Recommendations<br />

6.1 Antenatal Counselling <strong>and</strong> Testing<br />

6.2 Dispensing of Nevirapine to Mothers <strong>and</strong> Infants<br />

6.3 Infant Testing <strong>and</strong> Outcomes<br />

6.4 Maternal <strong>and</strong> Infant Follow Up<br />

6.5 Infant Feeding<br />

6.6 <strong>Health</strong> Care Infrastructure<br />

6.6.1 Human Resources<br />

6.6.2 Management<br />

6.7 Scaling up <strong>and</strong> Integrating <strong>PMTCT</strong> Initiatives<br />

Page Number<br />

1<br />

5<br />

6<br />

8<br />

10<br />

13<br />

14<br />

23<br />

26<br />

34<br />

37<br />

48<br />

65


BACKGROUND TO THE REPORT<br />

EXECUTIVE SUMMARY<br />

A decision was made by the National Department of <strong>Health</strong> at the end of 2000 to implement<br />

two <strong>PMTCT</strong> pilot sites in each province of South Africa. <strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong> was subsequently<br />

commissioned to evaluate progress with implementation in the pilot sites, <strong>and</strong> released a report<br />

in February 2002 covering the period January to December 2001.<br />

This second <strong>and</strong> final evaluation report on the <strong>PMTCT</strong> pilot sites builds on the previous one,<br />

<strong>and</strong> describes progress made between January <strong>and</strong> December 2002 in the same 18 pilot<br />

sites. This study forms part of the national research framework for the <strong>PMTCT</strong> programme,<br />

<strong>and</strong> reference is made in sections of the report to work conducted in other components of the<br />

overall <strong>PMTCT</strong> research.<br />

The focus of this report is on the performance of the original pilot sites, but attempts are made<br />

to describe the process underway in each of the provinces to exp<strong>and</strong> this programme beyond<br />

the pilot sites. This evaluation also assesses whether lessons learnt <strong>and</strong> problems identified<br />

from the first evaluation have been addressed.<br />

PERFORMANCE OF THE <strong>PMTCT</strong> PILOT SITES<br />

Coverage<br />

The 18 <strong>PMTCT</strong> pilot sites achieved a coverage of approximately 9% (84406/901882) of the<br />

total antenatal bookings in the public sector in 2002, which represents the same coverage<br />

in these sites as found in 2001. The total national coverage for <strong>PMTCT</strong> exceeds this figure as<br />

some Provinces managed to extend <strong>PMTCT</strong> beyond the pilot sites during this same time period,<br />

with KwaZulu-Natal <strong>and</strong> Western Cape achieving high levels of Provincial coverage. The 9%<br />

figure therefore represents a conservative estimate of national <strong>PMTCT</strong> coverage in South Africa<br />

in 2002.<br />

Voluntary Counselling <strong>and</strong> Testing (VCT)<br />

VCT provides an entry point to the <strong>PMTCT</strong> programme, <strong>and</strong> as <strong>PMTCT</strong> cannot be delivered<br />

without effective VCT (including specialised counselling on the implications of <strong>PMTCT</strong> for both<br />

mother <strong>and</strong> infant), it is assessed as a key component of implementation of <strong>PMTCT</strong> in the pilot<br />

sites.<br />

The uptake of HIV testing within the pilot sites has differed greatly, with some sites achieving<br />

high uptake <strong>and</strong> others consistently low uptake. This has influenced overall programme<br />

effectiveness in the provinces. The average testing uptake rate across the 18 pilot sites is 56%<br />

(46910/84406), a slight increase on the 51% found in the first evaluation period. There are<br />

large differences between provinces in the uptake of HIV testing (ranging from 14% to 92%).<br />

Several factors were identified which could have contributed to these differences, including<br />

access to training, the availability of lay counsellors, <strong>and</strong> the quality of counselling provided.<br />

HIV test results were received by 85% (39733/46910) of women who agreed to an HIV test.<br />

This is very encouraging <strong>and</strong> suggests that rapid tests are being used <strong>and</strong> that results are most<br />

likely available the same day as testing.<br />

HIV prevalence<br />

The average HIV positive rate amongst pregnant women tested in the pilot sites is 30%<br />

(14340/46910), which is the same rate as found in the first evaluation period. This figure is<br />

slightly higher than the National HIV sero-prevalence amongst women attending public<br />

antenatal services of 26.5% in 2002 1 . These two rates cannot be compared as the methods<br />

utilised to capture this information were different. The national antenatal sero-prevalence<br />

survey is an anonymous, unlinked cross sectional survey, whereas in the <strong>PMTCT</strong> pilot sites<br />

only women who consented to be tested for HIV were included in this data item. In addition,<br />

the <strong>PMTCT</strong> pilot sites were specifically chosen because of their situation in high HIV prevalence<br />

areas.<br />

1


Dispensing of Nevirapine<br />

Nevirapine was dispensed to an average of 55% (7853/14340) of HIV positive pregnant<br />

women who booked at the <strong>PMTCT</strong> pilot facilities during 2002. The 2001 evaluation estimated<br />

that nevirapine was dispensed to 30% of such women, suggesting an overall increase in<br />

dispensing. This is unfortunately an unreliable indicator of nevirapine coverage as nevirapine<br />

was dispensed in a variety of facilities <strong>and</strong> levels of care (antenatal clinics <strong>and</strong> hospital labour<br />

wards) to which these women had access <strong>and</strong> for which data could not always be accessed.<br />

Nevirapine administration to newborns was much higher with 99% (7932/7950) of infants<br />

born to HIV positive women in the pilot sites receiving nevirapine. As nevirapine is usually<br />

dispensed to the infant in the pilot facility or ward after delivery, this may provide a more<br />

accurate reflection of antiretroviral coverage. However, it may also hide missed opportunities<br />

as the indicator only includes women who were identified as being HIV positive in labour.<br />

Given the low rate of dispensing of nevirapine to women, it is likely that a significant number<br />

of women do not disclose their status to labour ward staff.<br />

Infant Feeding<br />

An average of 58% (4196/7237) of HIV positive women expressed an intention to practice<br />

exclusive formula feeding, <strong>and</strong> an average of 42% (3041/7237) of HIV positive women<br />

intended to practice exclusive breastfeeding. These rates differ substantially between provinces<br />

<strong>and</strong> study findings suggest that these differences are influenced by institutional or facility<br />

policies <strong>and</strong> staff training.<br />

The finding in most provinces is that formula feeding intention rates have decreased since the<br />

first evaluation. In the Free State formula feeding intention rates have decreased from 73%<br />

to 36%. In KwaZulu-Natal a similar decrease has been seen from 53% to 41%. The only<br />

province showing an increase in formula intention rates across both sites is the Eastern Cape<br />

where the rate increased from 62% to 80%.<br />

Study findings suggest that the decrease in intentions to formula feed <strong>and</strong> increase in the<br />

intentions to breastfeed are due to more than one factor, including increased infant feeding<br />

counselling training during 2002, as well as unreliable supplies of formula to facilities,<br />

particularly feeder clinics in certain sites.<br />

Infant Follow Up <strong>and</strong> Infant Testing<br />

This cross sectional study was not intended or designed to follow up infants. However, attempts<br />

were made to record follow up of infants delivered in these sites during the full period of<br />

implementation of <strong>PMTCT</strong> to identify operational issues related to the ability of services to<br />

follow up mothers <strong>and</strong> infants. Information is provided on follow up but must be interpreted<br />

with caution. A cohort study is currently underway to assess vertical transmission <strong>and</strong> will be<br />

reported on separately.<br />

A total of 1907 live infants were born to HIV positive women in the sites between April 2001<br />

<strong>and</strong> March 2002, <strong>and</strong> were due for follow up visits <strong>and</strong> testing (9 month <strong>and</strong> 12 month testing)<br />

between January <strong>and</strong> December 2002. Of these a total of 949 infants were tested for HIV<br />

in the pilot sites which translates to a follow up rate of 50%. Of these, 18% tested HIV positive.<br />

However, this figure cannot be extrapolated to the full cohort, as no information is available<br />

on the other 50%, for whom seroconversion could be vastly different for a variety of reasons.<br />

No information is available either on infant feeding practices of the infants for whom follow<br />

up tests were conducted.<br />

2


HEALTH CARE INFRASTRUCTURE<br />

Human Resources<br />

Counselling<br />

Lay counsellors are central to the <strong>PMTCT</strong> programme. Attempts have been made by all provinces<br />

to employ lay counsellors; however, several difficulties have been experienced <strong>and</strong> some pilot<br />

sites remain without counsellors. The employment conditions, remuneration, training <strong>and</strong><br />

supervision of lay counsellors differ greatly between provinces. Monthly salaries range from<br />

R500 to R2900. It is evident from the results that provinces in which lay counsellors are better<br />

paid, achieve higher testing uptake rates (e.g. KwaZulu-Natal <strong>and</strong> the Western Cape). In<br />

addition, low counsellor salaries have resulted in high rates of counsellor turnover <strong>and</strong> the<br />

need for constant re-training.<br />

<strong>Health</strong> Worker Training<br />

Provinces have adopted various approaches to training health workers on <strong>PMTCT</strong>. The most<br />

widely used approach is the UNICEF/National DoH supported <strong>PMTCT</strong> <strong>and</strong> infant feeding<br />

counselling course. This is a 5-day residential training course that focuses on infant feeding<br />

counselling <strong>and</strong> filled a gap that other training courses neglected to cover adequately.<br />

The Western Cape <strong>and</strong> the Free State developed an on-site training course focusing on the<br />

<strong>PMTCT</strong> protocol <strong>and</strong> operational issues. Courses typically last 2 days. This approach enabled<br />

more health workers to be trained on crucial operational issues in a short period of time. The<br />

main difference between the two approaches is that the UNICEF/National DoH training aimed<br />

to develop trainers <strong>and</strong> infant feeding counsellors whereas the Western Cape <strong>and</strong> Free state<br />

aimed to prepare staff to implement services.<br />

Management<br />

Information management<br />

The move from an intensive research oriented information system for the pilot sites to a limited<br />

information system integrated into the national essential primary health care dataset for the<br />

exp<strong>and</strong>ed programme is proving difficult. Many provinces are still collecting the full research<br />

dataset using numerous registers. This has resulted in virtually no data being available outside<br />

of the pilot sites as health workers are simply too busy to collect the information. Approval<br />

has been given for <strong>PMTCT</strong> data to be incorporated into the national essential primary health<br />

care dataset; however, implementation appears slow.<br />

Management of drugs <strong>and</strong> supplies<br />

The evaluation found evidence of disruptions in the supply of test kits, nevirapine <strong>and</strong> formula<br />

milk in some provinces. This was due to a variety of reasons including the separation of <strong>PMTCT</strong><br />

drugs <strong>and</strong> supplies from other essential primary level medicines, inadequate district <strong>and</strong><br />

provincial capacity to manage this procurement, short expiry limits of nevirapine tablets <strong>and</strong><br />

syrup, <strong>and</strong> poor quality of one particular type of testing kit resulting in delays when stocks<br />

had to be returned to the depots.<br />

Nevirapine is currently not on the Essential Drug List. Although registered as a Schedule 4<br />

medicine, it is h<strong>and</strong>led as a controlled substance (Schedule 5) in all facilities offering <strong>PMTCT</strong><br />

services. This system is time-consuming for health workers, unnecessarily bureaucratic <strong>and</strong><br />

may limit access to the drug.<br />

These problems influenced the number of women who participated in the programme. Greater<br />

involvement of the National <strong>Health</strong> Laboratory Service is needed to ensure regular quality<br />

control of rapid test kits. Furthermore, the planning for national antiretroviral treatment should<br />

weigh the need for security <strong>and</strong> documentation against the need for systems that are convenient<br />

<strong>and</strong> simple.<br />

3


SCALING UP THE <strong>PMTCT</strong> PROGRAMME<br />

There have been attempts to scale up the <strong>PMTCT</strong> programme beyond the pilot sites in all<br />

provinces. The greatest coverage exists in the Western Cape <strong>and</strong> KwaZulu-Natal, where<br />

comprehensive, phased expansion plans have been developed <strong>and</strong> additional funding allocated.<br />

In other provinces, the focus has remained on improving the functioning of the pilot sites.<br />

This has resulted in well-resourced provinces with access to technical <strong>and</strong> academic expertise,<br />

wide NGO networks <strong>and</strong> strong local government, achieving success <strong>and</strong> rapid expansion,<br />

whilst less resourced provinces continue to struggle to provide a basic service even at the pilot<br />

sites. Human resources <strong>and</strong> facility infrastructure require ongoing investment to provide<br />

communities with basic services. This report recognizes that many of the existing challenges<br />

to the effective <strong>and</strong> wide-scale provision of <strong>PMTCT</strong> should be resolved through strengthening<br />

the health system <strong>and</strong> human resource capacity at various levels. Moreover, a more planned<br />

approach to scaling up of the programme would ensure greater sustainability <strong>and</strong> coverage<br />

<strong>and</strong> allow <strong>PMTCT</strong> to serve as a vehicle for improving maternal <strong>and</strong> child health care.<br />

KEY CHALLENGES AND RECOMMENDATIONS<br />

1. The pilot sites have demonstrated that it is feasible to implement <strong>PMTCT</strong> in South Africa,<br />

but have also identified numerous operational challenges for establishing <strong>and</strong><br />

exp<strong>and</strong>ing a <strong>PMTCT</strong> programme under routine health service conditions. These<br />

challenges should be addressed as a matter of priority for the pilot sites, particularly<br />

those that are not performing adequately. However, these challenges are not<br />

insurmountable, <strong>and</strong> with the necessary leadership, planning <strong>and</strong> resource allocation,<br />

can be addressed to make full expansion of <strong>PMTCT</strong> in South Africa a reality.<br />

2. Strong leadership <strong>and</strong> management are needed at both provincial <strong>and</strong> national<br />

levels, to address existing shortcomings in pilot sites, <strong>and</strong> for expansion beyond these<br />

sites. Financial resources were made available by the National DoH to strengthen<br />

provincial capacity for <strong>PMTCT</strong>, but often the appointments made were not at a sufficiently<br />

senior level, <strong>and</strong> many had inadequate technical expertise required for this task.<br />

Provinces <strong>and</strong> National DoH need to address this jointly to ensure that each province<br />

has the required dedicated leadership <strong>and</strong> management capacity to support <strong>PMTCT</strong><br />

implementation.<br />

3. A clear policy framework <strong>and</strong> updated national implementation guidelines are urgently<br />

needed on key issues such as infant feeding, <strong>and</strong> infant testing. The evaluation has<br />

provided insights into infant feeding choices, availability of free formula at facilities<br />

<strong>and</strong> support systems to promote safe infant feeding. The continued supply of free<br />

formula in a scaled up <strong>PMTCT</strong> programme needs re-consideration at national <strong>and</strong><br />

provincial levels, with specific attention to issues of equity, duration for which free<br />

formula is provided, the quality of counselling provided, effects on the infant feeding<br />

practices of HIV positive <strong>and</strong> HIV negative women <strong>and</strong> on child health outcomes.<br />

4. Human resource capacity to provide the additional requirements for <strong>PMTCT</strong>, in particular<br />

counselling <strong>and</strong> testing, <strong>and</strong> training <strong>and</strong> support of professional staff, needs to be<br />

addressed. The availability of lay counsellors has in several of the pilot sites eased<br />

the workload of nurses <strong>and</strong> improved the uptake of HIV testing amongst pregnant<br />

women. National policy is required to clarify the role <strong>and</strong> responsibilities of, <strong>and</strong> the<br />

employment <strong>and</strong> remuneration of lay counsellors for HIV care.<br />

5. Completion of the data for the <strong>PMTCT</strong> pilot sites has been dem<strong>and</strong>ing on health service<br />

providers, <strong>and</strong> has not necessarily provided useful data for local management <strong>and</strong><br />

service delivery. Essential <strong>PMTCT</strong> data, as approved by NHISSA, should be the only<br />

items collected at all facilities. These items should be incorporated into the district<br />

health information system, so that it can flow through the same channels as all PHC<br />

data. The exp<strong>and</strong>ed research data items collected in the 18 pilot sites, should only<br />

be collected for specific research purposes, <strong>and</strong> discontinued once this research has<br />

been completed.<br />

REFERENCES<br />

1. National Department of <strong>Health</strong>. National HIV <strong>and</strong> Syphilis antenatal sero-prevalence<br />

survey in South Africa 2002. Pretoria, National Department of <strong>Health</strong>, 2003.<br />

4


INTRODUCTION<br />

Implementation of a pilot programme for the prevention of mother-to-child transmission (<strong>PMTCT</strong>)<br />

of HIV commenced in early 2001 in South Africa following a National government decision<br />

in late 2000. A total of 18 pilot sites, two in each of the 9 provinces, were selected using<br />

broad criteria including high HIV prevalence, representation of urban <strong>and</strong> rural health services,<br />

<strong>and</strong> primary <strong>and</strong> secondary level facilities. These served as research <strong>and</strong> learning sites to<br />

assess the feasibility of implementing this programme more widely. In May 2002, the<br />

Constitutional Court of South Africa ruled that nevirapine should be available to all HIV positive<br />

pregnant women <strong>and</strong> their infants, who give birth in any public sector facility. There has<br />

subsequently been a gradual <strong>and</strong> steady expansion of the <strong>PMTCT</strong> programme beyond the<br />

original pilot sites.<br />

In February 2002, an ‘Interim evaluation report of the <strong>PMTCT</strong> pilot programme’ covering the<br />

period January to December 2001, was released by the <strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong>. The interim<br />

evaluation focussed mainly on operational challenges involved with the implementation of the<br />

pilot sites. The main challenges associated with programme implementation were found to<br />

be health systems issues relating to poor infrastructure within the health system. It was<br />

emphasised that any expansion of <strong>PMTCT</strong> activities should occur simultaneously with general<br />

health system strengthening, particularly in rural, under resourced areas, to avoid widening<br />

the inequities between provinces.<br />

This report presents progress during the second year of the pilot programme, over the period<br />

January to December 2002, <strong>and</strong> documents experiences <strong>and</strong> key challenges associated with<br />

the pilot sites, <strong>and</strong> initial attempts to exp<strong>and</strong> this programme beyond the pilot sites. A focus<br />

of this evaluation has been to assess whether the lessons learnt <strong>and</strong> problems identified in the<br />

first evaluation have been addressed.<br />

The specific areas of programme functioning that this evaluation covers include:<br />

• National <strong>and</strong> provincial leadership <strong>and</strong> management<br />

• Human resource management<br />

• <strong>PMTCT</strong> training<br />

• <strong>PMTCT</strong> programme uptake<br />

• Information management<br />

• Infant feeding<br />

• Maternal <strong>and</strong> infant follow up<br />

This report draws on the experiences of the pilot sites <strong>and</strong> is specifically structured to highlight<br />

the strengths <strong>and</strong> weaknesses of the provincial programmes in order for best practices to be<br />

identified <strong>and</strong> for the report to serve as a basis for improvement. Specific areas of programme<br />

functioning were selected for discussion in order to develop key recommendations.<br />

5


AIM OF THE EVALUATION<br />

METHODOLOGY AND DESIGN<br />

The overall aim of the evaluation was to assess the performance <strong>and</strong> uptake of the <strong>PMTCT</strong><br />

programme in the eighteen pilot sites <strong>and</strong> to describe the processes underway in the provinces<br />

to exp<strong>and</strong> the <strong>PMTCT</strong> programme beyond the original pilot sites.<br />

SPECIFIC OBJECTIVES<br />

• To assess implementation of the components of the programme in the original pilot<br />

sites.<br />

• To assess uptake of the programme components in the pilot sites.<br />

• To analyse routine information collected in the 18 <strong>PMTCT</strong> pilot sites.<br />

• To evaluate <strong>PMTCT</strong> management at the provincial <strong>and</strong> national level.<br />

• To describe progress with the scaling up of <strong>PMTCT</strong> services in nine provinces.<br />

• To make policy recommendations to enhance the functioning of <strong>PMTCT</strong> services.<br />

RESEARCH DESIGN<br />

The evaluation utilised a cross-sectional design that incorporated both qualitative <strong>and</strong> quantitative<br />

research methods. The evaluation covers the period January to December 2002. Data was<br />

collected at district, provincial <strong>and</strong> national levels by one HST staff member <strong>and</strong> three external<br />

consultants. Two of the researchers were also involved in the first evaluation.<br />

SAMPLING FRAME<br />

In each of the nine provinces one pilot site hospital <strong>and</strong> one feeder clinic were visited. The<br />

same hospital <strong>and</strong> clinic that were visited for the first evaluation (covering the period January<br />

to December 2001) were selected for this repeat evaluation in order to assess progress over<br />

time.<br />

DATA COLLECTION METHODS<br />

Data collection methods utilised in this evaluation included individual interviews, document<br />

review, participant observation <strong>and</strong> review of routine monthly <strong>PMTCT</strong> data.<br />

Two questionnaires were developed for the evaluation, one for the facility level, <strong>and</strong> the other<br />

for the provincial level. The site questionnaire addressed management, training, counselling<br />

<strong>and</strong> testing, antenatal care, infant feeding, monitoring <strong>and</strong> follow up, procurement of supplies<br />

<strong>and</strong> community involvement. The provincial questionnaire addressed provincial management,<br />

information management, plans for expansion of the programme, <strong>and</strong> expenditure.<br />

At the facilities visited, individual interviews were conducted with health care workers (mostly<br />

midwives) in contact with antenatal clients, lay counsellors, nutrition advisors, hospital matrons<br />

<strong>and</strong> doctors. Individual interviews were conducted at the provincial level with the HIV director,<br />

<strong>PMTCT</strong> co-ordinator, MCWH co-ordinator <strong>and</strong> information officers. A review of documentation<br />

such as provincial roll-out plans, training plans, <strong>and</strong> financial reports was also undertaken.<br />

In order to ensure st<strong>and</strong>ardisation amongst researchers, the same tools were used in all<br />

provinces <strong>and</strong> the same categories of health workers were interviewed across all provinces.<br />

6


In order to evaluate national <strong>and</strong> provincial management of the programme, ongoing participant<br />

observation was undertaken through attendance at national <strong>and</strong> provincial level <strong>PMTCT</strong><br />

meetings throughout the period of the evaluation.<br />

All routine data was collated by consultants from the <strong>Health</strong> Information <strong>Systems</strong> Programme<br />

(HISP) who were sub-contracted by HST. This data was entered into <strong>and</strong> analysed using the<br />

District <strong>Health</strong> Information System (DHIS) Software.<br />

The research team met on three occasions during the course of the research in order to address<br />

issues of quality control <strong>and</strong> to ensure consistency in the application of the tools <strong>and</strong> interpretation<br />

of findings. In addition, every attempt was made to validate routine provincial data collected<br />

by the HISP consultants. This was done through review of registers during site visits <strong>and</strong><br />

attendance at national steering committee meetings where provincial data was presented.<br />

LIMITATIONS OF THE EVALUATION<br />

1. Definitions of expansion differed between provinces <strong>and</strong> the information collected was<br />

not always verifiable. Verifying provincial reports of expansion proved difficult, as the<br />

researchers were unable to visit each facility that was considered by the province to<br />

be a <strong>PMTCT</strong> site. Therefore, information provided by the provincial HIV directorates<br />

had to be relied on. Furthermore, the definitions of expansion differed from province<br />

to province, <strong>and</strong> this had to be accepted by the researchers. Some provinces considered<br />

a facility with supplies of nevirapine to be offering <strong>PMTCT</strong> whilst others considered<br />

a facility to be operational only once lay counsellors were employed, formula supplied<br />

<strong>and</strong> staff trained.<br />

2. The use of routine data for the evaluation also posed problems as there were many<br />

difficulties with data quality. Data was collected through registers designed by the<br />

National HIV Directorate <strong>and</strong> in some cases provincial HIV directorates. Registers<br />

were completed by health workers at the sites <strong>and</strong> data was entered by district <strong>and</strong><br />

provincial information officers. The researchers had little control over the data collection<br />

tools, data entry or data flow. Every attempt has been made to correct errors in the<br />

data; however, given the constraints raised there may still be some inaccuracies.<br />

7


OVERVIEW OF THE <strong>PMTCT</strong> PILOT SITES<br />

*Sites highlighted in blue were visited for this evaluation<br />

Province<br />

Site<br />

East London Complex<br />

Frere Hospital <strong>and</strong> 29 clinics, Cecilia Makiwane Hospital <strong>and</strong><br />

19 clinics.<br />

Umzimkulu Sub-district<br />

Rietvlei Hospital <strong>and</strong> 12 clinics (many of which are small, isolated,<br />

under-resourced <strong>and</strong> understaffed)<br />

Virginia<br />

Virginia Hospital <strong>and</strong> 8 clinics<br />

Frankfort<br />

Frankfort Hospital <strong>and</strong> 8 clinics<br />

Natalspruit<br />

Natalspruit hospital <strong>and</strong> J. Dumane CHC<br />

Kalafong<br />

Kalafong Hospital <strong>and</strong> Pretoria West antenatal clinic<br />

Durban<br />

King Edward VIII Hospital <strong>and</strong> Kwamashu Polyclinic, Prince<br />

Mysheni Hospital <strong>and</strong> feeder clinics in section D <strong>and</strong> K, Umlazi<br />

Pietermaritzburg<br />

Grey’s Hospital, Northdale Hospital <strong>and</strong> Sabantu <strong>and</strong> Northdale<br />

clinics, Edendale Hospital <strong>and</strong> Imbalenhle <strong>and</strong> Taylors Halt clinics,<br />

Church of Scotl<strong>and</strong> Hospital, Tugella Ferry.<br />

Date <strong>PMTCT</strong> Services<br />

Began<br />

July 2001<br />

July 2001<br />

July 2001<br />

August 2001<br />

May 2001<br />

June 2001<br />

June 2001<br />

July 2001<br />

Average number of first<br />

antenatal bookings in<br />

the pilot sites per month,<br />

2002<br />

1252<br />

83<br />

211<br />

152<br />

558<br />

226<br />

1100<br />

450<br />

Average number of<br />

first antenatal<br />

bookings in the<br />

province per month<br />

10 725<br />

4794<br />

11 152<br />

20 200<br />

KwaZulu-Natal<br />

Gauteng<br />

Free<br />

State<br />

Eastern<br />

Cape<br />

8


Mankweng<br />

Mankweng Hospital <strong>and</strong> 19 clinics (many of which are small,<br />

isolated, under-resourced <strong>and</strong> understaffed)<br />

Siloam<br />

Siloam Hospital <strong>and</strong> 17 clinics (some of which are small, isolated,<br />

under-resourced <strong>and</strong> understaffed).<br />

Shongwe<br />

Shongwe Hospital <strong>and</strong> 23 surrounding clinics (many of which<br />

are small, isolated, under-resourced <strong>and</strong> understaffed)<br />

Ev<strong>and</strong>er<br />

Ev<strong>and</strong>er Hospital, Lebohang CHC <strong>and</strong> Embalenhle clinic<br />

Thlabane<br />

Thlabane <strong>Health</strong> centre <strong>and</strong> 4 clinics<br />

Lehurutshe<br />

Lehurutshe District Hospital <strong>and</strong> 21 surrounding clinics<br />

Galashewe<br />

Galashewe Day Hospital, Kimberley Hospital, Masakhane clinic<br />

<strong>and</strong> Roodepan clinic<br />

De Aar<br />

De Aar Day Hospital, Motana clinic, Amalia clinic, Nomzwakazi<br />

clinic <strong>and</strong> one CHC<br />

Guguletu<br />

Guguletu MOU <strong>and</strong> 8 clinics in Nyanga district<br />

Paarl<br />

Paarl Hospital, T.C Newman CHC <strong>and</strong> 17 surrounding clinics<br />

Aug 2001. Service started<br />

in 6 clinics. Extended to 13<br />

clinics in December 2001<br />

Mid-Nov 2001<br />

Sept 2001 at Shongwe<br />

hospital. Few of the clinics<br />

have counselling <strong>and</strong><br />

testing services due to lack<br />

of counsellors<br />

October 2001<br />

July 2001<br />

July 2001<br />

August 2001<br />

August 2001<br />

Jan 2001<br />

May 2001<br />

508<br />

256<br />

30<br />

158<br />

851<br />

306<br />

166<br />

50<br />

338<br />

289<br />

11 475<br />

6904<br />

6321<br />

1631<br />

7507<br />

Western<br />

Cape<br />

Northern<br />

Cape<br />

North<br />

West<br />

Mpumalanga<br />

Limpopo<br />

9


DESCRIPTION OF ROUTINE <strong>PMTCT</strong> INDICATORS<br />

PRESENTED IN THIS REPORT<br />

Indicator<br />

HIV testing rate<br />

amongst<br />

pregnant<br />

women<br />

HIV test results<br />

received rate<br />

HIV positive rate<br />

amongst<br />

pregnant<br />

women tested<br />

Formula for calculation<br />

Num: Number of<br />

pregnant women who<br />

have an HIV test<br />

Den: Number of first<br />

antenatal visits / bookings<br />

Num: Number of<br />

pregnant women who<br />

receive an HIV test result<br />

Den: Number of<br />

pregnant women who<br />

have an HIV test<br />

Num: Number of HIV<br />

positive test results<br />

Den: Number of<br />

pregnant women who<br />

have an HIV test<br />

Definition<br />

This indicator measures the proportion<br />

of antenatal clients who agree to be<br />

tested for HIV. It should also include<br />

women tested post partum prior to<br />

discharge.<br />

This indicator measures the proportion<br />

of antenatal clients who are tested<br />

for HIV that receive their test results<br />

(it includes both positive <strong>and</strong> negative<br />

test results).<br />

This indicator measures the proportion<br />

of pregnant women who test positive<br />

for HIV from amongst those who<br />

accept to be tested.<br />

Explanatory notes<br />

The determination of first ANC visits in urban sites is complex<br />

as many cases are referred after booking, thus in some sites,<br />

first visits can represent the first time a women accessed testing<br />

rather than the first antenatal visit.<br />

In terms of policy, HIV testing is only done after pre-test<br />

counselling, thus low testing rates may be indicative of poor<br />

counselling infrastructure.<br />

Although the data in this report indicates a high proportion<br />

of test results received, staff were generally concerned about<br />

the lack of organisational infrastructure to ensure that women<br />

received test results.<br />

The prevalence rates amongst women attending the pilot sites<br />

are in many instances higher than the rate in the annual<br />

antenatal sero-prevalence survey. It is important to note that<br />

the pilot sites were selected because they are in high HIV<br />

prevalence areas therefore these high rates are not totally<br />

unexpected.<br />

10


Nevirapine<br />

(NVP)<br />

dispensing rate<br />

to HIV positive<br />

pregnant<br />

women<br />

Num: Number of<br />

nevirapine tablets<br />

dispensed to pregnant<br />

women with HIV<br />

Den: Number of<br />

antenatal clients testing<br />

HIV positive<br />

This indicator measures the<br />

proportion of HIV positive pregnant<br />

women who receive nevirapine.<br />

This indicator is a rather inaccurate measure of nevirapine<br />

coverage of to pregnant women with HIV. No distinction<br />

has been made between NVP dispensed in the antenatal<br />

clinic setting <strong>and</strong> NVP administered in the labour ward<br />

setting therefore double counting can occur. The denominator<br />

for this indicator is the number of HIV positive test results,<br />

however, many of the women who test positive for HIV may<br />

not deliver in the same month therefore it is not possible to<br />

accurately measure whether nevirapine was actually taken<br />

by each HIV positive woman in labour. This indicator is<br />

simply a broad measure of nevirapine tablets utilised in<br />

the system <strong>and</strong> it should not be used as a measure of<br />

programme effectiveness. The data should be derived from<br />

pharmacy inventory records rather than clinic <strong>and</strong> hospital<br />

registers.<br />

11


Nevirapine<br />

(NVP)<br />

dispensing rate<br />

to newborns<br />

Num: Doses of<br />

nevirapine syrup<br />

dispensed to newborns of<br />

HIV positive women.<br />

Den: Number of live births<br />

to HIV positive women<br />

Breastfeeding<br />

intention rate<br />

Num: Number of HIV<br />

positive women intending<br />

to exclusively breastfeed<br />

Den: Number of live births<br />

to HIV positive women<br />

Formula feeding<br />

intention rate<br />

Num: Number of HIV<br />

positive women intending<br />

to exclusively formula feed<br />

Den: Number of live births<br />

to HIV positive women<br />

This indicator measures the<br />

proportion of newborns who receive<br />

nevirapine syrup<br />

This indicator measures the<br />

proportion of HIV positive women<br />

who indicate at the time of discharge<br />

that they intend to exclusively<br />

breastfeed their infants. This is not<br />

a measure of actual practice.<br />

This indicator measures the<br />

proportion of HIV positive women<br />

who indicate at the time of discharge<br />

that they intend to exclusively formula<br />

feed their infants. This is not a<br />

measure of actual practice.<br />

It is important to note that this represents treatment coverage<br />

only in infants of women who have been identified as being<br />

HIV positive, therefore missed opportunities are not included.<br />

This rate will be inaccurate when two doses of nevirapine<br />

are administered to babies born to mothers that are untreated<br />

or inadequately treated or when mothers delivering at home<br />

bring their babies to the labour ward or postpartum ward<br />

for treatment. In these situations proportions in excess of<br />

100% may be found.<br />

Data collected for these elements demonstrated a limited<br />

underst<strong>and</strong>ing of their use, thus they must be treated with<br />

caution<br />

Quantitative data collection of intention is of limited value as<br />

it is simply a measure of intentions.<br />

12


KEY FINDINGS AND RECOMMENDATIONS<br />

This section presents the key findings of this evaluation <strong>and</strong> discussion relating to the main<br />

challenges. The topics covered in this section were chosen because they were identified in the<br />

provincial evaluations as requiring further exploration <strong>and</strong> discussion. Where appropriate,<br />

examples are drawn from provincial experiences in order to highlight lessons <strong>and</strong> challenges.<br />

Key recommendations are given at the end of each discussion area.<br />

13


6.1 Antenatal Counselling <strong>and</strong> Testing<br />

This chapter attempts to highlight the key findings from this evaluation that relate to counselling<br />

<strong>and</strong> testing services for pregnant women <strong>and</strong> to raise specific areas that require further<br />

discussion <strong>and</strong> in some instances policy guidance. Specific issues relating to lay counsellors<br />

will be discussed in a subsequent chapter.<br />

The interim evaluation of the <strong>PMTCT</strong> programme made specific recommendations about<br />

counselling <strong>and</strong> testing for <strong>PMTCT</strong>. These included:<br />

• The creation of a cadre of generic lay health workers with st<strong>and</strong>ardised employment<br />

conditions including fair salaries.<br />

• The creation of adequate space within facilities for HIV counselling.<br />

• The broadening of the notion of counselling to include ongoing support beyond the<br />

initial period of testing, <strong>and</strong> the promotion of couple counselling.<br />

KEY FINDINGS FROM THE EVALUATION<br />

<strong>PMTCT</strong> Counselling<br />

In most of the facilities visited for this evaluation, antenatal clients are introduced to the<br />

components of the <strong>PMTCT</strong> programme during a group information session. All first antenatal<br />

clients are therefore informed about the <strong>PMTCT</strong> programme together. However, in some facilities<br />

this is not done, due either to a shortage of staff, or a low client load which allows for individual<br />

information sessions. In Limpopo, group information sessions are not given <strong>and</strong> nurses have<br />

argued convincingly that they achieve better communication <strong>and</strong> testing uptake by concentrating<br />

on one-to-one communication. A cause for concern was the finding that group information<br />

sessions in many provinces include information on formula feeding. This should not be part<br />

of group information to woman prior to testing as it may confuse the general public <strong>and</strong><br />

undermine breastfeeding practices.<br />

Following the information session, in most facilities, individual pre-test counselling is offered<br />

<strong>and</strong> women can decide whether or not to have an individual counselling session. In KwaZulu-<br />

Natal individual HIV counselling is seen as compulsory in order for women to make an<br />

informed choice regarding HIV testing. The presence of lay counsellors in every facility offering<br />

<strong>PMTCT</strong> in KwaZulu-Natal allows this approach to succeed. The very high uptake of HIV testing<br />

in this province may be related to the approach of providing individual counselling to every<br />

antenatal client.<br />

In many but not all of the facilities offering <strong>PMTCT</strong>, counselling is performed by lay counsellors.<br />

In Mpumalanga, the Eastern Cape, North West <strong>and</strong> the Northern Cape there are still problems<br />

with the employment of lay counsellors. In these provinces, most counselling is performed by<br />

nurses with numerous clinical duties. The low uptake of HIV testing in these provinces may<br />

be attributable to the lack of lay counsellors.<br />

In addition to human resource support for counselling, the physical infrastructure of facilities<br />

also impacts on the ability to provide individual, confidential counselling. As with the previous<br />

evaluation, this evaluation found large differences between facilities with regard to physical<br />

space to perform counselling. In some instances rooms have dual purposes, serving as storerooms<br />

<strong>and</strong> counselling rooms. This results in frequent interruptions during counselling sessions.<br />

Table 6.1.1 includes one facility from each province with an indication of the numbers of lay<br />

counsellors, the numbers of dedicated counselling rooms <strong>and</strong> the testing uptake rate for 2002.<br />

Clearly some facilities have insufficient dedicated space for counselling. This has implications<br />

for client waiting times <strong>and</strong> the level of confidence in the ability of a facility to provide a<br />

confidential service, both of which impact on decisions to take an HIV test. The table suggests<br />

that the availability of space for private counselling influences the rate of testing uptake amongst<br />

antenatal clients. In some facilities inadequate space for counselling has led to correspondingly<br />

low rates of testing uptake. Facilities with sufficient space appear to achieve higher testing<br />

uptake rates although the examples of Church of Scotl<strong>and</strong> Hospital in KZN <strong>and</strong> Natalspruit<br />

Hospital in Gauteng show that a high uptake of HIV testing is possible with constraints on<br />

physical space.<br />

14


Table 6.1.1: Physical space for counselling<br />

Province Facility Average Number of lay<br />

number of first counsellors/ nurse<br />

antenatal visits counsellors<br />

per month<br />

Number of<br />

dedicated<br />

counselling<br />

rooms<br />

Testing<br />

uptake<br />

rate, 2002<br />

Eastern<br />

Cape<br />

Rietvlei<br />

Hospital<br />

83<br />

2 nurse counsellors/<br />

no lay counsellors<br />

2 rooms<br />

86%<br />

Free State<br />

Virginia<br />

Hospital<br />

211<br />

2 lay counsellors<br />

Office used for<br />

counselling<br />

shared with<br />

hospital coordinator<br />

58%<br />

Gauteng<br />

Natalspruit,<br />

Hospital<br />

558<br />

5 lay counsellors<br />

4 rooms<br />

79%<br />

KwaZulu-<br />

Natal<br />

Church of<br />

Scotl<strong>and</strong>,<br />

Hospital<br />

275<br />

4 lay counsellors<br />

3 rooms<br />

83%<br />

Limpopo<br />

Siloam<br />

Hospital<br />

256<br />

3 lay counsellors<br />

2 rooms<br />

57%<br />

Mpumala<br />

nga<br />

Shongwe<br />

Hospital<br />

30<br />

2 nurse counsellors/<br />

no lay counsellors<br />

5 rooms<br />

57%<br />

North<br />

West<br />

Lehurutse<br />

Hospital<br />

306<br />

5 lay counsellors<br />

2 rooms<br />

27%<br />

Northern<br />

Cape<br />

Galeshewe<br />

Day Hospital<br />

(GDH)<br />

166<br />

8 lay counsellors<br />

4 rooms<br />

42%<br />

Western<br />

Cape<br />

Paarl East<br />

Day Hospital<br />

289<br />

5 lay counsellors<br />

5 rooms<br />

99%<br />

HIV Testing<br />

Antenatal testing<br />

All facilities offering <strong>PMTCT</strong> services use rapid HIV tests. HIV test results are generally available<br />

the same day except in cases of severe staff shortage or stock outs of rapid test kits.<br />

Figure 6.1.1: SA HIV testing rate in the 18 pilot sites, 2002<br />

100<br />

%<br />

80<br />

60<br />

40<br />

20<br />

0<br />

NW EC LP NC FS MP GP WC KZN Average<br />

Figure 6.1.1 shows the percentage of antenatal clients in the 18 pilot sites who agreed to an<br />

HIV test during 2002. The average testing uptake rate across the 18 pilot sites is 56%<br />

(46910/84406).<br />

15


This rate has increased slightly since the first evaluation covering the period January to December<br />

2001 where it was found to be 51%. The graph highlights the large differences between provinces<br />

in the uptake of HIV testing (ranging from 14% in the North West to 92% in KwaZulu-Natal).<br />

In addition to variation between provinces, much variation exists within provinces. For example<br />

in the Eastern Cape, the testing uptake rate in the Rietvlei site is 86% (852/995) whilst the rate<br />

in the East London site is 31% (4602/15025). Various reasons were found for the large differences<br />

between provinces in testing uptake:<br />

• The availability of lay counsellors<br />

The provinces with the smallest drop off between first antenatal visits <strong>and</strong> women accepting HIV<br />

testing, namely Gauteng, KwaZulu-Natal <strong>and</strong> the Western Cape, have all prioritised the utilisation<br />

of lay counsellors, either by directly employing them or by contracting NGOs to employ them.<br />

Provinces with low HIV testing uptake such as the North West (14%) <strong>and</strong> the Eastern Cape (34%)<br />

are still struggling to employ lay counsellors <strong>and</strong> many of the pilot facilities still rely on nurse<br />

counsellors.<br />

• The counselling strategy adopted in provinces<br />

In some provinces women are given the option to receive individual pre-test counselling whilst<br />

in other provinces such as KwaZulu-Natal, individual counselling is seen as an integral part of<br />

antenatal care <strong>and</strong> all women receive an individual session with a counsellor. Following this<br />

session a woman can decide whether to be tested for HIV. It appears that this approach increases<br />

the uptake of testing as it may normalise counselling as a part of antenatal care <strong>and</strong> not associate<br />

it only with testing for HIV.<br />

• Physical space available for counselling<br />

As described above, facilities with insufficient space for counselling appear to have lower testing<br />

uptake rates than facilities that do have sufficient space. This infra-structural constraint should<br />

not be regarded as a reason not to implement <strong>PMTCT</strong> in a facility. Strengthening of facility<br />

infrastructure should be seen as an ongoing priority to enable effective provision of <strong>PMTCT</strong>.<br />

• Distribution <strong>and</strong> technical support for HIV testing<br />

There have been interruptions in the supply of testing kits to many facilities particularly in the<br />

Free State, Eastern Cape <strong>and</strong> Mpumalanga. These interruptions can result in missed opportunities<br />

for HIV testing. Much of the procurement of supplies still takes place through the national HIV<br />

directorate as they have tenders with specific manufacturers. As the programme exp<strong>and</strong>s more<br />

rapidly it will be important for districts <strong>and</strong> sub-districts to procure their own supplies to avoid<br />

interruptions in service delivery.<br />

There have also been documented false negative results with the Efoora test kit from many<br />

facilities. A decision has been taken by the national Department of <strong>Health</strong> not to renew the<br />

tender with the manufacturer of this test kit. As the tender decisions have major implications for<br />

delivery of <strong>PMTCT</strong> in all provinces, a thorough investigative process should be conducted prior<br />

to allocation of tenders using the available expertise, <strong>and</strong> with the involvement of senior managers<br />

in the National HIV/AIDS Directorate.<br />

Figure 6.1.2: Receipt of HIV test results by clients, 2002<br />

100<br />

%<br />

80<br />

60<br />

40<br />

20<br />

0<br />

GT NW KZN FS MP EC WC LP NC Average<br />

16


HIV test results were received by 85% (39733/46910) of women who agreed to an HIV test.<br />

This is very encouraging <strong>and</strong> suggests that rapid tests are being used <strong>and</strong> that results are most<br />

likely available the same day as testing. The reasons for the large proportion of clients who<br />

do not received their test results in Gauteng <strong>and</strong> the North West should be investigated to<br />

determine whether this is related to stock outs of test kits or a particular policy within these<br />

provinces.<br />

HIV testing in labour <strong>and</strong> postpartum<br />

This evaluation found that very few facilities are offering HIV testing to women in early labour<br />

or postnatally. This was found to be due in many cases to personal beliefs of nurses regarding<br />

the appropriateness of testing in labour, as well as the lack of lay counsellors in labour <strong>and</strong><br />

postnatal wards. The National <strong>PMTCT</strong> Protocol for the pilot states that women who do not<br />

attend antenatal care <strong>and</strong> report to a facility in labour should not have access to antiretroviral<br />

drugs because they cannot be adequately counselled <strong>and</strong> tested. The policy does however<br />

recommend early postpartum testing <strong>and</strong> infant prophylaxis. The policy regarding counselling<br />

<strong>and</strong> testing in labour should be reviewed <strong>and</strong> postnatal testing should be actively encouraged<br />

to prevent missed opportunities for treating infants.<br />

Ongoing counselling <strong>and</strong> support<br />

It was clear during this evaluation that <strong>PMTCT</strong> counselling is focussed around pre- <strong>and</strong> post-<br />

HIV testing <strong>and</strong> that very little ongoing support is provided. This was due to a lack of human<br />

resources <strong>and</strong> inability to cope with the dem<strong>and</strong>s of counselling for HIV testing. Initiatives do<br />

exist, such as the ‘Mothers-to-Mothers-to-Be’ programme described in appendix 6.1, that have<br />

developed innovative strategies to provide ongoing support to mothers using resources outside<br />

of health facilities. Some facilities have also started support groups, which are dependent on<br />

the availability of facilitators <strong>and</strong> a suitable venue.<br />

The involvement of local NGOs in ongoing support appeared minimal at most facilities visited<br />

except for the NGO management of facility-based lay counsellors. NGOs can serve as valuable<br />

sources of support for home-based care, infant feeding support <strong>and</strong> ongoing counselling, <strong>and</strong><br />

their involvement in <strong>PMTCT</strong> services should be encouraged.<br />

KEY ISSUES FOR DISCUSSION<br />

Counselling in the context of <strong>PMTCT</strong><br />

For pregnant women to make informed decisions about reducing their risks of transmitting<br />

HIV to their infants, they must know their HIV status. Therefore, counselling <strong>and</strong> HIV testing<br />

is the entry point into the <strong>PMTCT</strong> programme. Making counselling <strong>and</strong> testing services available<br />

in health centres <strong>and</strong> clinics is a key <strong>PMTCT</strong> programme objective. United Nations guidelines 1<br />

recommend that all pregnant women receive voluntary counselling <strong>and</strong> testing for HIV.<br />

Counselling in the context of <strong>PMTCT</strong> occurs in two phases:<br />

• Counselling <strong>and</strong> informed consent for HIV testing<br />

• Ongoing counselling <strong>and</strong> information during the antenatal <strong>and</strong> postnatal period to<br />

support infant feeding <strong>and</strong> other decisions such as disclosing HIV status.<br />

Counselling <strong>and</strong> testing for HIV has traditionally taken place in the context of existing illness<br />

as clients are typically referred from services treating STIs, TB or other infectious diseases. In<br />

the maternal <strong>and</strong> child health setting, counselling <strong>and</strong> testing has the potential to reach large<br />

numbers of women who may not already be infected thereby providing an opportunity for<br />

prevention through counselling to reduce high-risk behaviours.<br />

17


Group education followed by individual pre- <strong>and</strong> post-test counselling is the model that has<br />

been adopted for the <strong>PMTCT</strong> programme in most settings. The group education session is used<br />

in most sites as a way to introduce women to the <strong>PMTCT</strong> programme <strong>and</strong> to the option of<br />

individual counselling <strong>and</strong> testing. It has not been determined to what extent this method of<br />

giving information may actually discourage women from opting for individual counselling.<br />

Following the group education session, women are offered the option of individual counselling.<br />

In order to fully integrate the <strong>PMTCT</strong> programme into maternal health services, there is the<br />

belief among some health professionals that counselling should be compulsory <strong>and</strong> testing<br />

voluntary. This approach has already been adopted in KwaZulu-Natal which has a testing<br />

uptake rate of 92%.<br />

In pregnancy, providing information about HIV testing is not optional. Without information,<br />

there can be no informed choice. It is essential to provide information <strong>and</strong> to assist women<br />

to make a decision as to whether to be tested for HIV. Provision of information <strong>and</strong> counselling<br />

to pregnant women about HIV testing should be part of the current st<strong>and</strong>ard of care, such<br />

as is information <strong>and</strong> counselling around family planning.<br />

Therefore we should refer to this process as counselling <strong>and</strong> voluntary testing (CVT), which<br />

in principle is no different from the informed choices that we give people in any medical care.<br />

Support Requirements of Counsellors<br />

During interviews with staff involved in <strong>PMTCT</strong> counselling, the issue of support for counsellors<br />

was raised. Very few provinces have implemented measures to provide psychological support<br />

to staff involved with HIV counselling. The Western Cape Metro region has committed additional<br />

resources to employing professional counsellors to run regular sessions with staff at facilities<br />

implementing <strong>PMTCT</strong> <strong>and</strong> VCT. KwaZulu-Natal has also employed full time mentors to provide<br />

regular support <strong>and</strong> debriefing for lay counsellors. Where these measures have been taken,<br />

they have often focussed on lay counsellors <strong>and</strong> not nursing staff who in many facilities have<br />

to manage large counselling loads in addition to an already heavy clinical workload.<br />

Greater attention should be paid to the needs of health workers <strong>and</strong> counsellors involved in<br />

HIV counselling to prevent burn out <strong>and</strong> high staff turnover.<br />

Testing for HIV<br />

Rapid ELISA testing is offered as part of the <strong>PMTCT</strong> programme. This is currently performed<br />

by nurses <strong>and</strong> the results are available within 15 minutes. The average uptake rate for HIV<br />

testing in the 18 pilot sites in 2002 was 56%. This meets the World <strong>Health</strong> Organisation 2<br />

suggested target that at least 50% of pregnant women counselled should be tested for HIV,<br />

as part of their recommended routine <strong>PMTCT</strong> indicators. Although a nationally defined target<br />

for the uptake of HIV testing has not been established, any site with a testing uptake rate of<br />

>80% can be considered to be doing very well. A testing uptake rate of between 50-80% can<br />

be considered to be reasonably good with room for improvement, <strong>and</strong> a testing uptake rate<br />

of below 50% is considered to be unsatisfactory <strong>and</strong> those sites should be targeted for extra<br />

support.<br />

Provincial HIV Testing Uptake Rates<br />

HIV Testing Rate<br />

> 80%<br />

50-80%<br />


There are various factors that influence the uptake of HIV testing. These include both health<br />

service <strong>and</strong> community factors. <strong>Health</strong> service factors include:<br />

• Work flow arrangements<br />

• HIV testing policies<br />

Community factors include:<br />

• Lack of awareness of HIV/AIDS <strong>and</strong> <strong>PMTCT</strong><br />

• Stigma <strong>and</strong> discrimination<br />

• Fear of negative reactions from partners or relatives<br />

<strong>Health</strong> service factors<br />

• Work Flow<br />

The organisational arrangement <strong>and</strong> workflow within facilities also impacts on the uptake of<br />

HIV testing. Limiting antenatal bookings to certain days of the week may be beneficial in that<br />

women would meet together as a group; however, it could also result in unacceptably high<br />

work loads on those days <strong>and</strong> possibly long waiting times. Other issues such as the marking<br />

of dedicated rooms for counselling may result in stigmatisation for clients seen to be entering<br />

or leaving that room. The security of counselling <strong>and</strong> testing registers is also important to avoid<br />

risks to client confidentiality.<br />

• HIV Testing Policy<br />

One possible reason why testing uptake in this programme is less than desired is the current<br />

“opt-in” testing policy under which women must make a specific request to be tested. Two<br />

alternative strategies are available. One involves routine HIV counselling with an opportunity<br />

to “opt-in” for testing. A second alternative is to offer HIV testing as part of the routine series<br />

of ANC tests <strong>and</strong> allow women to “opt-out” if so desired. Since there is little experience with<br />

the opt-out strategy in Africa, many health service managers feel that further research is<br />

needed to compare the acceptability <strong>and</strong> uptake in the ANC setting of the opt-out versus the<br />

opt-in strategy.<br />

A recent policy development with regard to rapid testing is the decision by the <strong>Health</strong> Professions<br />

Council of South Africa taken in February 2003, to allow trained lay counsellors to perform<br />

the initial screening test for HIV. The interpretation of the results of the test should still be<br />

confirmed by a nurse. This could substantially reduce the workload of nurses given that<br />

approximately 70% of women will test HIV negative <strong>and</strong> won’t require a confirmatory test to<br />

be performed by a nurse.<br />

Community factors<br />

The risk of rejection, ab<strong>and</strong>onment <strong>and</strong> fear of loss of support related to an HIV positive<br />

diagnosis was expressed by many health workers interviewed as a serious limiting factor to<br />

HIV testing. A woman is generally the first member of a couple to receive HIV testing <strong>and</strong><br />

know her status. Despite attempts by counsellors <strong>and</strong> nurses to offer VCT for couples, the<br />

uptake of testing by partners continues to be poor. This data item was not collected as part<br />

of routine data but anecdotal evidence from the sites suggests that less than 1% of partners<br />

opt to be tested for HIV. The environment within antenatal clinics may alienate men, despite<br />

the service being available.<br />

A study of <strong>PMTCT</strong> services in Khayelitsha 3 found that despite high awareness of the presence<br />

of HIV/AIDS in the community, it is still associated with stigmatisation <strong>and</strong> fear among<br />

community members. Disclosure of HIV positive status was found in this study to be a very<br />

isolating experience for mothers.<br />

19


WHO 2 recommends that at least 50% of partners of antenatal clients should be tested for HIV.<br />

This is quite an ambitious target given the current situation therefore serious attention should<br />

be focussed on strategies to increase male involvement in this programme.<br />

HIV testing in labour<br />

Very few facilities offer counselling <strong>and</strong> HIV testing to women during labour. This is partly<br />

because health workers do not feel that it is appropriate, <strong>and</strong> partly because lay counsellors<br />

are not available in many delivery wards. An evaluation of obstetric services conducted by<br />

HST 4 found that in most of the facilities surveyed, the physical layout of the labour ward made<br />

privacy for counselling difficult. Women arriving in labour were usually separated from family<br />

<strong>and</strong>/or friends, thus allowing questions about HIV status <strong>and</strong> nevirapine to be asked privately.<br />

Confidentiality was more difficult when this initial evaluation occurred in a room occupied<br />

by more than one patient – this occurred in 73% of the facilities surveyed. Nurses complained<br />

that in rooms where beds are separated only by a curtain, even whispered conversations can<br />

be overheard. A few sites offered counselling <strong>and</strong> testing to women in early labour, a service<br />

provided by nurses <strong>and</strong> midwives. Some patients were given results immediately, others after<br />

birth.<br />

The policy regarding counselling <strong>and</strong> testing in labour should be revisited. However, it should<br />

be emphasised that testing should be offered to all women of unknown status postpartum in<br />

order for missed opportunities for treating infants to be avoided. Studies are planned to<br />

compare the efficacy of post exposure nevirapine prophylaxis to infants only versus doses to<br />

both mother <strong>and</strong> infant. These results may remove the dilemma regarding testing <strong>and</strong> treatment<br />

during labour if the infant only prophylaxis proves as effective as doses to both mother <strong>and</strong><br />

infant.<br />

Ongoing counselling <strong>and</strong> support<br />

The South African National Protocol for the <strong>PMTCT</strong> pilot sites 5 states that counselling should<br />

involve a pre-test session, post-test session <strong>and</strong> that HIV positive women should be offered<br />

counselling at every subsequent antenatal visit. The purpose of these sessions is to assist women<br />

to cope with the diagnosis <strong>and</strong> to make plans to prevent HIV transmission to the infant. Despite<br />

this recommendation that counselling should occur beyond the context of testing, field visits<br />

for this evaluation confirmed that little ongoing counselling is taking place.<br />

The lack of ongoing support is of particular concern in relation to infant feeding counselling.<br />

Infant feeding options are included in the post-test counselling session for HIV positive women<br />

along with a host of other information. The time immediately following an HIV positive diagnosis<br />

is one of confusion, perhaps anger <strong>and</strong> shock. Attempting to convey large amounts of<br />

information during this time may often not seem appropriate or compassionate. However, due<br />

to the shortage of staff in most facilities, which limits opportunities for ongoing counselling<br />

<strong>and</strong> support, this is where issues such as infant feeding options are discussed. Ideally this<br />

should be done in a follow up counselling session once the mother has had an opportunity<br />

to deal with the initial impact of her HIV status.<br />

Given the constraints to support at the facility level, strengthening of community links is essential<br />

to provide follow up support for mothers both antenatally <strong>and</strong> postnatally. The care <strong>and</strong> support<br />

links between facilities <strong>and</strong> local NGOs remain poor in many of the sites. Interviews during<br />

site visits revealed that referrals from sites are made largely to secondary <strong>and</strong> tertiary medical<br />

facilities, <strong>and</strong> not to NGOs to meet care <strong>and</strong> support needs. The involvement of NGOs appears<br />

to be limited to supplying lay counsellors. Ongoing community support can assist with disclosure,<br />

infant feeding practices, reducing stigma <strong>and</strong> linking individuals with community resources.<br />

Support groups are also a valuable place where women can share their experiences with<br />

others <strong>and</strong> gain from the group support. Unfortunately very few sites have been able to<br />

implement <strong>PMTCT</strong> support groups. This is due to many reasons including:<br />

• Lack of space within facilities<br />

• Shortage of staff to facilitate the group<br />

• Fear on the part of women of being identified as HIV positive<br />

20


The entire burden of care <strong>and</strong> support for HIV positive individuals cannot rest on the health<br />

system alone. Initiatives such as the one described in Appendix 6.1 fill an important gap <strong>and</strong><br />

they should be evaluated to determine the potential for their expansion.<br />

Disclosure<br />

For pregnant women known to be infected with HIV, the avoidance of re-infection during<br />

pregnancy <strong>and</strong> lactation is important to lower the risk of MTCT. This can only be achieved if<br />

their partners are involved in preventive interventions, particularly VCT <strong>and</strong> infant feeding<br />

counselling. However, the uptake of VCT amongst partners as well as disclosure of test results<br />

remains very low. Findings from this evaluation revealed that women were more likely to<br />

disclose to other family members than to their partners.<br />

A study conducted at a <strong>PMTCT</strong> site in the Western Cape 3 reported that women felt that being<br />

diagnosed HIV positive would result in serious social <strong>and</strong> domestic consequences. This highlights<br />

the impact of the stigma, blame <strong>and</strong> discrimination that characterises the HIV epidemic in<br />

South Africa.<br />

Counselling of women should include providing them with skills <strong>and</strong> support to discuss HIV<br />

risk reduction <strong>and</strong> facilitate disclosure to partners or family members.<br />

Recommendations<br />

• Counselling within <strong>PMTCT</strong> programmes tends to be focussed around HIV testing. This<br />

needs to be complemented much more with ongoing support during the antenatal <strong>and</strong><br />

postnatal period.<br />

• The rapid expansion of VCT services should be accompanied by strategies to ensure<br />

quality assurance, otherwise the programme will be of limited effectiveness as many<br />

barriers to the uptake of counselling <strong>and</strong> testing will remain.<br />

• Different models of peer <strong>and</strong> community support should be explored.<br />

• Improved collaboration among clinics <strong>and</strong> NGOs should be encouraged to meet care<br />

<strong>and</strong> support needs.<br />

• Regular supplies of test kits should be ensured through improved management of supply<br />

procurement. Procurement of supplies should be the responsibility of provinces <strong>and</strong> not<br />

the national HIV directorate. Minimum re-order levels should be established so that<br />

replacement orders can be made in good time to avoid stocks running out.<br />

• Thorough communication needs to take place from the National DoH regarding the<br />

new policy on lay counsellor testing to avoid confusion <strong>and</strong> tension at the level of<br />

service delivery.<br />

SUGGESTIONS FOR FURTHER RESEARCH<br />

<strong>Health</strong> systems research<br />

• Research is needed to explore the quality of counselling offered as part of the package<br />

of care for <strong>PMTCT</strong>. This evaluation addressed issues such as physical space <strong>and</strong> staffing;<br />

however, it was not able to assess the quality of individual counselling sessions <strong>and</strong> this<br />

is necessary to guide future training efforts.<br />

• The needs of health workers <strong>and</strong> lay counsellors involved in HIV counselling were not<br />

explored during this evaluation. We would recommend that research be conducted to<br />

assess the extent of counselling related burnout <strong>and</strong> to provide possible strategies to prevent<br />

it.<br />

• Models for community involvement in the <strong>PMTCT</strong> programme should be evaluated.<br />

Social science research<br />

• Research is also needed to underst<strong>and</strong> the origins <strong>and</strong> pathways of stigma <strong>and</strong> ways<br />

to measure it.<br />

• Research is needed to explore the effective use of communication strategies to promote<br />

VCT <strong>and</strong> <strong>PMTCT</strong>.<br />

21


APPENDIX 6.1: EXAMPLE OF A PEER COUNSELLING AND SUPPORT STRATEGY<br />

Mothers-to-Mothers-to-Be:<br />

Peer Counselling, Education <strong>and</strong> Support for Pregnant Women in Cape<br />

Town, South Africa.<br />

Mothers-to-Mothers-to-Be (M2M2B) is a mentorship programme for HIV infected pregnant<br />

women. Recently delivered HIV infected mothers who have passed through the antenatal<br />

programme are invited to return to the antenatal clinic to act as mentors, educators, counsellors,<br />

friends <strong>and</strong> confidants for recently diagnosed, HIV infected pregnant women. At the first<br />

antenatal visit, a pregnant woman is matched with a woman who has recently delivered – a<br />

mentor. This mentor sits with the pregnant woman – keeps her company, helps her with<br />

questions, the logistics of negotiating the hospital, reinforces messages about taking nevirapine<br />

<strong>and</strong> choosing a feeding method. At each appointment, the patient sees the same mentor.<br />

The mentor-mothers also visit mothers in labour <strong>and</strong> the post-partum wards. Post-partum<br />

education is so important for mothers going home with new babies. HIV positive mothers are<br />

challenges by uncertainties about feeding regimes <strong>and</strong> they need to be certain about followup<br />

care for themselves <strong>and</strong> their babies.<br />

At a clinic, each day, different mentor-mothers are scheduled to be part of the care team. Ten<br />

mothers provide care each week; each mother has her day so patients know when to come<br />

back to see a familiar face. Each mentor-mother holds her position for six months. After six<br />

months, the mothers graduate to be replaced by new mentor-mothers. The mentor-mothers<br />

are paid a stipend for their work.<br />

The first M2M2B programme was started at Groote Schuur Hospital in Cape Town in October<br />

2001. M2M2B has subsequently opened in Khayelitsha’s Site B MOU, a primary care maternity<br />

centre <strong>and</strong> at Mowbray Maternity Hospital, a district hospital. Additional sites in the Cape<br />

Town area, Paarl, Kimberley, East London <strong>and</strong> Johannesburg are awaiting M2M2B programs.<br />

The programme has been a tremendous success, with rapid expansion only limited by funding<br />

constraints.<br />

The programme has resulted in an increase in pre-natal visits, <strong>and</strong> an increase in knowledge<br />

on the issues surrounding HIV <strong>and</strong> pregnancy resulting in greater adherence to therapies that<br />

will reduce vertical transmission of HIV.<br />

REFERENCES<br />

1. UNAIDS. Counselling <strong>and</strong> voluntary HIV testing for pregnant women in high HIV<br />

prevalence countries: Guidance for service providers. UNAIDS, 1999.<br />

2. WHO/UNICEF/UNAIDS. Local monitoring <strong>and</strong> evaluation of the integrated prevention<br />

of mother to child HIV transmission in low-income countries. Geneva: WHO, 2001.<br />

3. Chopra M, Piwoz E, Sengwana J, Schaay N, Dunnett L, S<strong>and</strong>ers D. Effect of a motherto-child<br />

HIV prevention programme on infant feeding <strong>and</strong> caring practices in South<br />

Africa. SAMJ 2002; 92(4): 298-302.<br />

4. Besser M, Dinat N, Paruk F. Changing obstetric practices in the context of HIV: an<br />

evaluation of service provision in the national <strong>PMTCT</strong> learning sites. Durban: HST,<br />

2002.<br />

5. South African National Department of <strong>Health</strong>. Protocol for the eighteen <strong>PMTCT</strong> pilot<br />

sites in South Africa. Pretoria: Department of <strong>Health</strong>, 2001.<br />

22


6.2 Dispensing of Nevirapine to Mothers <strong>and</strong> Infants<br />

DISPENSING OF NEVIRAPINE TO MOTHERS<br />

The national <strong>PMTCT</strong> protocol for the pilot sites stipulates that HIV positive pregnant women<br />

who are 28 weeks or more in their gestation should be given 200mg of nevirapine for selfadministration<br />

at the onset of labour or rupture of membranes.<br />

This evaluation found that an average of 55% of HIV positive pregnant women were dispensed<br />

nevirapine in the pilot sites during 2002. This is an improvement from the first evaluation in<br />

2001 where the percentage of HIV positive women receiving nevirapine was 30%.<br />

This indicator is an unreliable measure of nevirapine tablets dispensed to pregnant women<br />

with HIV. For various reasons this indicator can over or under estimate actual nevirapine<br />

coverage. This routine data was collected in both the antenatal clinics <strong>and</strong> labour wards, <strong>and</strong><br />

not linked to patient identifiers. Total doses dispensed to HIV positive mothers in each setting<br />

were recorded by staff, <strong>and</strong> used by researchers to obtain the overall coverage. Double<br />

counting could therefore have occurred which would over estimate coverage.<br />

Underestimation of the coverage could also have occurred if a woman chose not to disclose<br />

her status to labour ward staff, yet self administered her nevirapine dose. This dose although<br />

administered would not be recorded in the routine data. It was unfortunately not possible for<br />

researchers to assess the extent of any over or under estimation of this figure.<br />

The denominator for this indicator is the number of HIV positive test results, however, many<br />

of the women who test positive for HIV may not deliver in the same month therefore it is not<br />

possible to accurately measure whether nevirapine was actually taken by each HIV positive<br />

woman in labour. This indicator is simply a broad measure of nevirapine tablets utilised in<br />

the system <strong>and</strong> it should not be used as a measure of programme effectiveness. In future, the<br />

data on dispensing should be derived from pharmacy inventory records rather than clinic <strong>and</strong><br />

hospital registers.<br />

Despite the limitations of this indicator, it is lower than the WHO 1 recommended target that<br />

at least 75% of HIV-infected women should receive an ARV during labour. However, in<br />

comparison with other African countries, the estimated nevirapine coverage in South Africa<br />

appears reasonable. In the nine African <strong>PMTCT</strong> sites supported by the United Nations, only<br />

about 18% of the target population (HIV positive women) received antiretrovirals 2 . Wilfert 3<br />

reports better results in the Elizabeth Glaser Pediatric AIDS Foundation supported sites in 10<br />

African countries, with 37% of HIV positive mothers receiving treatment. Reasons for the low<br />

uptake in these sites are related to both health service <strong>and</strong> community factors.<br />

Provinces achieving the highest rate (>60%) of estimated nevirapine dispensing to HIV positive<br />

pregnant women are the Northern Cape (92%), Eastern Cape (69%) <strong>and</strong> Mpumalanga (63%).<br />

This may be due to the small number of HIV positive women identified in these provinces per<br />

month. The average number of HIV positive women identified per month in the Northern Cape<br />

is 19, <strong>and</strong> in Mpumalanga, the average is 37. This low average HIV positive client load,<br />

together with the limited number of sites offering <strong>PMTCT</strong> services in these two provinces may<br />

enable easier tracking of clients. In the Eastern Cape, the average number of HIV positive<br />

women identified per month is far higher at 134. Further research should be performed to<br />

determine the enabling factors that have resulted in high nevirapine coverage in these provinces.<br />

This research should also assess whether the expansion of <strong>PMTCT</strong> services to more facilities<br />

enables or hampers tracking of HIV positive mothers.<br />

The lowest estimated nevirapine dispensing rates are seen in KwaZulu-Natal (49%) <strong>and</strong> the<br />

Western Cape (48%). The extensive expansion of <strong>PMTCT</strong> services in these provinces may have<br />

resulted in more difficult tracking of monthly cohorts of HIV positive women. It is possible that<br />

women may receive antenatal care at a clinic, yet deliver their infants at a hospital. The<br />

accumulation of nevirapine data from these different settings, which may not even be in the<br />

same district, may be difficult.<br />

23


Figure 6.2.1: Nevirapine dispensing to HIV positive women in the pilot sites, 2002<br />

100<br />

%<br />

90<br />

80<br />

70<br />

60<br />

50<br />

40<br />

30<br />

20<br />

10<br />

0<br />

WC KZN NW LP FS GT MP EC NC Average<br />

There are a number of problems with the dispensing of nevirapine to HIV positive pregnant<br />

women:<br />

1. Inadequate patient information regarding correct nevirapine administration<br />

There were reports from some sites that women did not adequately underst<strong>and</strong> the<br />

regimen for nevirapine administration. This resulted in some women taking the tablet<br />

antenatally at the time it was dispensed <strong>and</strong> requiring a second dose when in labour.<br />

Some sites reported a high number of women who required nevirapine to be dispensed<br />

in the labour ward which suggests that tablets are not correctly self-administered or<br />

are lost, or that women forget to take the tablet when they go into labour.<br />

2. Lack of clarity regarding the dispensing of repeat doses to women<br />

The national <strong>PMTCT</strong> protocol for the pilot sites stipulates that in the case of false or<br />

prolonged labour nevirapine can be taken again 24 hours after the first dose at a<br />

subsequent onset of labour. A study conducted in South Africa showed that giving two<br />

doses of nevirapine to mothers results in a much higher rate of nevirapine resistance<br />

than one dose 4 . A circular dated 16 th of April 2002 was sent from the national<br />

Department of <strong>Health</strong> to provinces informing them, amongst other things of the revised<br />

nevirapine regimen. The circular states that women in prolonged or false labour should<br />

not receive a repeat dose of nevirapine. This evaluation found that in many facilities,<br />

midwives were not aware of the change to the protocol <strong>and</strong> this information did not<br />

appear to have been transmitted from provincial management to the facility level.<br />

3. Difficulties identifying HIV positive women in the labour ward due to non-disclosure<br />

The dispensing of nevirapine to HIV positive women in labour relies on the presence<br />

of a unique patient identifier or on the willingness of the woman to disclose her status<br />

to health workers. HIV positive women may be reluctant to reveal their HIV status in<br />

delivery rooms that lack privacy, or to staff that have not been involved in their antenatal<br />

counselling <strong>and</strong> care. This can result in missed opportunities for nevirapine coverage<br />

of HIV positive pregnant women.<br />

24


NEVIRAPINE ADMINISTRATION TO INFANTS<br />

Figure 6.2.2: Nevirapine dispensing rate to newborns in the 18 pilot sites, 2002<br />

100<br />

%<br />

80<br />

60<br />

40<br />

20<br />

0<br />

NW LP FS GP MP WC EC NC KZN Average<br />

Nevirapine administration to newborns is a more accurate reflection of antiretroviral coverage<br />

as it is usually dispensed in one facility <strong>and</strong> sometimes one ward. However, it is important to<br />

note that this indicator represents treatment coverage only in infants of women who have been<br />

identified as being HIV positive therefore missed opportunities are not included. This rate will<br />

also be inaccurate when two doses of nevirapine are administered to babies born to mothers<br />

that are untreated or inadequately treated or when mothers delivering at home bring their babies<br />

to the labour ward or postpartum ward for treatment. In these situations proportions in excess<br />

of 100% may be found.<br />

The national <strong>PMTCT</strong> protocol for the pilot sites stipulates that all infants born to HIV-infected<br />

women should receive a single dose of nevirapine suspension between 24 <strong>and</strong> 72 hours after<br />

delivery.<br />

Figure 6.2.2 shows that an average of 99% of infants born to HIV positive women in the pilot<br />

sites received nevirapine. This rate is extremely high across all provinces although this only<br />

reflects coverage of infants born to HIV positive women who were identified as being HIV positive<br />

during labour. Given the low rate of nevirapine dispensing to mothers, it is likely that a significant<br />

number of HIV positive women do not identify themselves as being HIV positive in labour.<br />

RECOMMENDATIONS<br />

1. There needs to be a distinction made between pharmacy stock control of nevirapine<br />

<strong>and</strong> monitoring to determine nevirapine coverage. In order to improve the accuracy<br />

of this indicator, nevirapine dispensing should be recorded in one place, preferably<br />

the labour ward. Nevirapine dispensing in the antenatal setting can be controlled by<br />

the pharmacy.<br />

2. Greater efforts should be made to identify HIV positive women in the labour ward<br />

setting to prevent missed opportunities for nevirapine coverage of mothers <strong>and</strong> infants.<br />

Staff should not rely on tracking numbers on patient cards or folders to identify HIV<br />

positive status; this should be done by asking women in privacy.<br />

3. The change in the clinical protocol for nevirapine dosage should be communicated<br />

to all facilities to ensure that repeat doses are not given.<br />

REFERENCES<br />

1. WHO/UNICEF/UNAIDS. Local monitoring <strong>and</strong> evaluation of the integrated prevention<br />

of mother to child HIV transmission in low-income countries. Geneva: WHO, 2001.<br />

2. Chopra M. Personal communication, July 2003.<br />

3. Wilfert C. Prevention of mother to child transmission of HIV: reflections on implementation<br />

of <strong>PMTCT</strong> in the developing world. Acta Paediatrica 2002; 91:863-865.<br />

4. Moodley D, Moodley J, Coovadia H, Gray G et al. A multicenter r<strong>and</strong>omised controlled<br />

trial of nevirapine versus a combination of zidovudine <strong>and</strong> lamivudine to reduce<br />

intrapartum <strong>and</strong> early postpartum mother to child transmission of human<br />

immunodeficiency virus type 1. Journal of Infectious Diseases 2003; 187: 725-35.<br />

25


6.3 Infant Testing <strong>and</strong> Outcomes<br />

BACKGROUND<br />

One of the anticipated aims of the national <strong>PMTCT</strong> pilot programme was to assess the effectiveness<br />

of this programme in reducing mother-to-child transmission of HIV. A great deal of public<br />

anticipation of the “results” from these pilot sites has therefore been generated. It is important,<br />

however, to clarify that the design of the pilot sites allowed for an evaluation of the operational<br />

issues associated with providing <strong>PMTCT</strong> care but was not appropriate for determining transmission<br />

rates. A prospective cohort study has been commissioned by the National Department of <strong>Health</strong><br />

in order to measure vertical transmission rates. However, important lessons can be learnt from<br />

this evaluation relating to operational issues associated with the testing of infants.<br />

The primary objective of the <strong>PMTCT</strong> programme is to reduce the transmission of HIV from a<br />

mother to her infant. The national <strong>PMTCT</strong> protocol for the pilot sites stipulates that all children<br />

should be tested for HIV 12 months after delivery. If the infant tests positive at 12 months they<br />

should be retested at 15 months to ensure that the 12-month test was not a false-positive test<br />

due to residual maternal antibodies in the infant. For mothers continuing to breastfeed after 12<br />

months, an HIV test should be performed at least 3-months after the mother ceases breastfeeding.<br />

This section will present key findings from the evaluation that relate to infant testing as well as<br />

presenting an alternative testing strategy to improve the follow up component of <strong>PMTCT</strong>.<br />

KEY FINDINGS FROM THE EVALUATION<br />

Uptake of Infant HIV Testing<br />

This evaluation found fairly low uptake of infant HIV testing at 12 months across most provinces.<br />

Table 1 displays the infant testing rates in all 9 provinces. It is difficult to draw conclusions from<br />

this data as some provinces test infants at 9 months <strong>and</strong> others at 12 months. In addition, some<br />

provinces changed their testing protocol from 9 months to 12 months during 2002 <strong>and</strong> the<br />

researchers were not always able to determine exactly when this change occurred. Specificity<br />

of the rapid HIV ELISA test at 9 months <strong>and</strong> 12 months is only 59% <strong>and</strong> 89% respectively 1 .<br />

Approximately 40% of truly negative infants would therefore test positive at 9 months, making<br />

the data which includes 9 month test results an unreliable indicator of HIV transmission.<br />

A large proportion (50%) of the infants born to mothers who received nevirapine, were not<br />

followed up <strong>and</strong> tested. The HIV status of these infants is therefore unknown <strong>and</strong> could potentially<br />

vary substantially from the results of infants that were followed up <strong>and</strong> tested. It is therefore not<br />

possible to draw any conclusions on impact or effectiveness of the programme from this data.<br />

Table 6.3.1: Infant testing rates<br />

Province<br />

Number of live births<br />

Number of infants tested<br />

for HIV<br />

HIV testing<br />

rate<br />

Number of<br />

infants testing<br />

HIV positive<br />

Eastern Cape 1<br />

Free State 1<br />

Gauteng 2<br />

KwaZulu-Natal 2<br />

Limpopo 1<br />

Mpumalanga 2<br />

North West 1<br />

Northern Cape 1<br />

Data only available for<br />

GDH site<br />

Western Cape 3<br />

TOTALS<br />

305 (Sept 01 – March 02)<br />

129 (Aug 01 – March 02)<br />

403 (May – Dec 01)<br />

470 (Sept – Dec 01)<br />

45 (Nov 01-March 02)<br />

55 (Sept –Dec 01)<br />

11 (July 01 – March 02)<br />

65 (Aug 01 – March 02)<br />

424 (April 01-March 02)<br />

1907<br />

76 (June – Dec 02)<br />

56 (May-Dec 02)<br />

40 (May – Dec 02)<br />

368 (Sept – Dec 02)<br />

17 (Aug – Dec 02)<br />

12 (Sept –Dec 02)<br />

44 (April –Dec 02)<br />

25 (May-Dec 02)<br />

311 (Jan-Dec 02)<br />

949<br />

25%<br />

43%<br />

10%<br />

78%<br />

38%<br />

22%<br />

39%<br />

38%<br />

73%<br />

50%<br />

4<br />

21<br />

3<br />

38<br />

3<br />

3<br />

8<br />

17<br />

73<br />

170 (18%)<br />

Note: 1. Province changed infant testing policy from 9 to 12 months during 2002<br />

2. Province tests infants at 12 months<br />

3. Province tests infants at 9 months<br />

26


Impressive infant follow up rates have been achieved in the Western Cape (73%) <strong>and</strong> KwaZulu-<br />

Natal (78%) possibly due to the extensive coverage of these provinces with <strong>PMTCT</strong> services<br />

enabling easier follow up of infants at the clinic level. A further factor enabling improved<br />

follow up of infants in the above provinces is the expansion plan which focused on geographical<br />

areas <strong>and</strong> referral systems rather than sites <strong>and</strong> facilities. This facilitates improved tracking<br />

of mothers <strong>and</strong> infants between delivery centres <strong>and</strong> feeder clinics.<br />

The Western Cape tests infants at 9 months despite the national <strong>PMTCT</strong> protocol for the pilot<br />

sites calling for 12 month testing. The province is concerned that delaying testing until 12<br />

months will result in higher loss to follow up. As a result of this policy, approximately 40% of<br />

infants are testing false positive at 9 months <strong>and</strong> have to have a repeat test at 15 months. The<br />

province is planning to change to early PCR testing of infants to improve both follow up <strong>and</strong><br />

clinical management.<br />

In the other seven provinces the follow up rates are low. This may be due to the fact that in<br />

many of these provinces, particularly in Gauteng <strong>and</strong> Mpumalanga, <strong>PMTCT</strong> services have not<br />

been extended to many feeder clinics as expansion has been focused primarily on hospitals.<br />

Mothers therefore have to return to the primary <strong>PMTCT</strong> site, usually a hospital, in order for<br />

their infants to be tested for HIV.<br />

The low rate of follow up occurs for a variety of reasons that include:<br />

• Inadequacies in the routine monitoring system<br />

• Poor referral networks between hospitals <strong>and</strong> clinics<br />

• Limited numbers of clinics offering the <strong>PMTCT</strong> programme<br />

• Tracking/coding systems using patient-held records not implemented or ineffective<br />

• Mothers reluctance to disclose their HIV status to health workers<br />

The high loss to follow up rate means that those infants born to HIV positive women involved<br />

in the <strong>PMTCT</strong> programme, the majority will have their HIV infection status determined for the<br />

first time when they present with HIV disease <strong>and</strong> are not receiving routine medical care<br />

recommended for HIV infected children (viz, prophylactic co-trimoxazole under 12 months.<br />

They also do not access other medical interventions that might benefit their health such as<br />

nutrition support <strong>and</strong> multivitamins in the case of growth faltering.<br />

Out of the 949 infants in the pilot sites (excluding the De Aar site) that were tested for HIV,<br />

170 tested HIV positive (18%). It is important to note that over half of the infants tested were<br />

from the Western Cape <strong>and</strong> KwaZulu-Natal, the number of infants tested in the other 7<br />

provinces is extremely small. Given the small number of infants tested <strong>and</strong> the testing method<br />

used, (antibody test between 9 <strong>and</strong> 12 months) this figure can not be considered an accurate<br />

reflection of the vertical transmission rate amongst this group of infants.<br />

In order to determine transmission rates in infants receiving care through the <strong>PMTCT</strong> programme<br />

<strong>and</strong> to facilitate improved clinical management of infants born to HIV positive women, either<br />

the follow up of infants to 12 months needs to be drastically improved, or an alternative<br />

method of determining infant HIV status needs to be adopted. Such an alternative testing<br />

recommendation is discussed in this chapter.<br />

Counselling for the infant HIV test<br />

Pre <strong>and</strong> post test counselling is also required when testing infants for HIV. This evaluation<br />

found that health workers were generally unsure as to how to counsel mothers for their infant’s<br />

HIV test. There was also lack of clarity regarding who could be given the infant HIV test result;<br />

the mother, father or a caregiver. The current <strong>PMTCT</strong> protocol provides no guidelines in this<br />

regard.<br />

There are many issues that should be discussed at the time of the infant’s HIV test including<br />

the implications of the test result, requirements for further follow up care of the infant including<br />

prevention of opportunistic infections in the case of a positive diagnosis <strong>and</strong> care <strong>and</strong> support<br />

of the mother. This component of the programme should receive as much time <strong>and</strong> attention<br />

as the counselling associated with maternal testing. Ongoing training of clinic nurses may be<br />

necessary to familiarise them with the follow up needs of mothers <strong>and</strong> infants.<br />

27


DISCUSSION<br />

HIV Diagnosis in Infants<br />

The purpose of testing perinatally exposed infants is three fold: firstly, on an individual level<br />

to determine an infant’s true HIV infection status in order to make clinical management<br />

decisions; secondly, to determine the relative efficacy of various interventions to reduce vertical<br />

transmission; <strong>and</strong> finally, at a population level, to evaluate the effectiveness of the <strong>PMTCT</strong><br />

programme.<br />

The diagnosis of HIV infection in infants requires careful timing of the initial HIV antibody<br />

based (ELISA) diagnostic test (including the Abbott Determine HIV-1/2 <strong>and</strong> other rapid tests<br />

which are currently used at <strong>PMTCT</strong> sites). This is due to the presence <strong>and</strong> persistence of<br />

maternal HIV-specific antibodies in all perinatally exposed infants for many months after birth.<br />

Sero-reversion may occur as early as 9 months (40-60%) but maternal HIV antibodies have<br />

been shown to persist for up to 18 months 2 . To accurately assess the effectiveness of the <strong>PMTCT</strong><br />

programme, accurate, affordable <strong>and</strong> timeous infant HIV diagnostic protocols are required.<br />

General Principles of HIV Testing in Infants<br />

1. Diagnosis needs to be made in the clinical context of the case, with knowledge of the<br />

various test options <strong>and</strong> their interpretation depending on the age of the child.<br />

2. Different protocols may be needed for different areas depending on accessibility to<br />

laboratory tests. However, data presented here proposes that where testing can be<br />

centralized to a reference laboratory, an HIV DNA PCR test is recommended.<br />

3. Infant feeding must be taken into consideration. In the case of a woman who has chosen<br />

to breastfeed, early HIV testing (using an HIV DNA PCR) to determine status may serve<br />

as (a) an incentive to stop breastfeeding if child is negative or (b) encouragement to<br />

continue breastfeeding if the child is already positive, or (c) a guide to considering relactation<br />

if the woman has not been breastfeeding <strong>and</strong> the child is already positive.<br />

CURRENTLY AVAILABLE INFANT HIV TESTS<br />

Antibody Tests<br />

A. Serum HIV ELISA Tests<br />

These tests include onsite rapid tests <strong>and</strong> laboratory based analyzer assays. The later in life<br />

they are performed in infants the more accurate the results, but this means longer periods of<br />

follow up of large numbers of HIV exposed children, most of whom will be negative. To date<br />

this has resulted in enormous loss to follow up.<br />

The Abbott Diagnostics Determine HIV-1/2 Rapid Test can be purchased at US$0.85/test or<br />

provided free of charge through the company’s <strong>PMTCT</strong> support programme. Confirmatory<br />

Rapid tests like Unigold which confirm initial rapid positive results cost about R25.00. Less<br />

than1% of these rapid tests are discordant. Laboratory based HIV-1/2 ELISA tests requested<br />

from the NHLS cost the state R33.50/test. The advantage of rapid tests is that they can be<br />

performed on site rapidly by both lay counsellors (the screening test) <strong>and</strong> nurses, <strong>and</strong> do not<br />

require specimen transport to a laboratory except in the case of ELISA confirmation.<br />

B. Oral fluid Based HIV ELISA Tests<br />

Oral fluid contains lower concentrations of antibodies, including anti-HIV antibodies, than<br />

serum. Waning maternal anti-HIV antibodies at 12 months of age in HIV uninfected children<br />

are therefore less likely to give false positive HIV ELISA tests results when measured in oral<br />

fluid as compared to serum. Oral fluid tests are currently not recommended for diagnostic<br />

purposes <strong>and</strong> have not been evaluated in children under 13 years of age. Both sensitivity <strong>and</strong><br />

specificity on 204 patients using OraSure is 94%.<br />

28


Nucleic Acid Tests (NAT)<br />

Nucleic Acid Testing involves detection of the specific HIV nucleic acid either DNA or RNA.<br />

A. HIV DNA PCR<br />

This has been shown to be highly sensitive <strong>and</strong> specific at 6 weeks, 3 months <strong>and</strong> later (using<br />

the Roche Amplicor 1.5 assay- see Table 2 below 3 ). The test can be performed earlier but<br />

sufficient sensitivity data at earlier time points is not available nor is it practical to test earlier<br />

since a mother’s first scheduled clinic return visit is normally 6 weeks (well baby check <strong>and</strong><br />

immunization), hence the 6 week timing of the test is perfect. The cost/test is R225. Utility of<br />

this assay has been well defined in key MTCT clinical trials namely the PETRA <strong>and</strong> SAINT<br />

studies. A DNA PCR at 6 weeks of age in 293 infants attending the Coronation hospital <strong>PMTCT</strong><br />

clinic concurred with the 3 month PCR result in all cases 4 . It needs to be emphasized that the<br />

v1.5 test, in use since 2000, has yielded significantly better sensitivity <strong>and</strong> specificity than the<br />

previous version assay <strong>and</strong> it is recommended that the v1.5 test is used.<br />

Table 6.3.2: Sensitivity <strong>and</strong> specificity for DNA PCR tests<br />

Age<br />

< 48 hours<br />

48 hours – 7 days<br />

8 days – 1 month<br />

1-4 months<br />

4-6 months<br />

Sensitivity (95% CI)<br />

0.55 (0.32, 0.76)<br />

0.75 (0.36, 1)<br />

0.81 (0.62, 0.95)<br />

0.98 (0.87, 1)<br />

0.95 (0.82, 0.99)<br />

Specificity (95% CI)<br />

1 (0.99, 1)<br />

1 (0.97, 1)<br />

1 (0.99, 1)<br />

1 (0.99, 1)<br />

1 (0.99, 1)<br />

Note: CI = confidence interval<br />

Source: North Caroline Retrovirology Laboratory<br />

B. HIV RNA (Viral load based assays; PCR, bDNA, NASBA)<br />

Similar to DNA PCR but detects <strong>and</strong> quantifies levels of HIV-1 RNA. These tests do not offer<br />

any significant advantages <strong>and</strong> are more expensive. RNA may be detected early in infection<br />

(< 6weeks). However, this gain does not justify almost 2-3 times the cost of an HIV DNA PCR<br />

assay. Some local research has been done into qualitative + quantitative “home-brew” HIV<br />

RNA PCR tests using customized reagents on real-time based PCR instruments. These assays<br />

have not yet been st<strong>and</strong>ardized <strong>and</strong> therefore should not yet be recommended for wide-scale<br />

use. They may provide cost advantages <strong>and</strong> therefore should still be pursued.<br />

C. p24 Antigen Assay<br />

This uses Schupbach’s method of signal-amplification-boosted ELISA. Several centers are<br />

showing good results with this assay but further research is required. This assay could replace<br />

the HIV DNA PCR test if there is a significant cost saving.<br />

29


Current Status of Infant Testing<br />

Currently National DOH Guidelines for infant testing in <strong>PMTCT</strong> pilot sites indicate that an<br />

ELISA test should be performed at age 12 months. Previously HIV antibody assays were being<br />

performed between 9-12 months but this has shown to generate a large number of false<br />

positives particularly when testing at around 9 months, due to persistence of maternal HIV<br />

antibodies.<br />

A study conducted at King Edward Hospital (KZN) site of the PETRA study showed HIV ELISA<br />

test specificity at 9 months <strong>and</strong> 12 months of only 59% <strong>and</strong> 89% respectively 1 . The low specificity<br />

at 9 months suggested the change in policy to delay the rapid test to 1 year (with a repeat<br />

test at 15 months in the event of a positive result). Provincial departments have been asked<br />

to stop testing at 9 months <strong>and</strong> to ensure that the 1 st antibody HIV test is performed on a child<br />

1 year or older. Despite this recommendation, some provinces such as the Western Cape<br />

continue to test infants at 9 months.<br />

Some experts think that a rapid test at 12 months may still be too early 5 . A study conducted<br />

at the Coronation Hospital in Gauteng showed that 40% of HIV uninfected children tested HIV<br />

ELISA positive at 12 months of age with a lab based ELISA test 4 . Delaying testing further,<br />

however, may be impractical <strong>and</strong> result in further loss to follow up.<br />

Problems with the Current Testing Protocol<br />

The delay of 1 year in being able to make a reasonably accurate diagnosis in infants has the<br />

following repercussions:<br />

• Unacceptable rates of loss to follow up (in some provinces >50%)<br />

• Inability to adequately evaluate the effectiveness of the <strong>PMTCT</strong> programme<br />

• Inability to provide appropriate clinical <strong>and</strong> social support to families<br />

• Immeasurable emotional costs to families waiting for the HIV status of an infant<br />

• Direct <strong>and</strong> indirect costs of providing co-trimoxazole to HIVnegative babies<br />

• Large numbers (70-94%) of HIV negative babies treated as HIV positive for the first<br />

year of life.<br />

Advantages of Earlier Testing<br />

There are numerous benefits to performing early nucleic acid testing of HIV exposed infants,<br />

which clearly have enormous social implications <strong>and</strong> will affect management of HIV in these<br />

children, their families, <strong>and</strong> society. Using earlier NAT would have the following benefits:<br />

• Reduction in the loss to follow up<br />

By offering testing of infants at 6 weeks this would provide some incentive for mothers to<br />

adhere to this follow up visit <strong>and</strong> they may be more willing to disclose their status in order<br />

for their infant to be tested. Women who learn that their infants are positive at this early<br />

stage may be more motivated to return for frequent clinic visits in order to maintain the<br />

health of their infants <strong>and</strong> to benefit from ongoing care.<br />

• Improved monitoring of the effectiveness of the <strong>PMTCT</strong> programme<br />

Earlier testing of infants would enable the National Department of <strong>Health</strong> to have more<br />

accurate records of HIV transmission rates in which to evaluate programme effectiveness.<br />

This is an important monitoring tool as unacceptably high vertical transmission rates may<br />

be due to problems in other aspects of the programme such as poor uptake of nevirapine,<br />

inappropriate obstetric practices or poor infant feeding counselling.<br />

• Reducing the numbers of children requiring long term follow up by 90%<br />

The HIV status of infants could be tested at a 6 week visit <strong>and</strong> HIV uninfected children<br />

discharged from specific HIV follow up as early as 10-14 weeks of age with certain provisos.<br />

Only HIV infected children (about 10% of the total HIV exposed, non breastfed children)<br />

would require specific further follow up <strong>and</strong> prophylaxis for opportunistic infections.<br />

30


• Reduction in Mother/Family anxiety<br />

Early infant diagnosis relieves the majority of HIV positive mothers of the emotional burden<br />

of having infected their children (since between 70-94% of babies will be born negative).<br />

The emotional <strong>and</strong> human value of this is beyond measure.<br />

• Informed formula feeding choice<br />

Early knowledge of the HIV status of an infant may enable mothers to make a more informed<br />

decision regarding feeding choices. Mothers who have been breastfeeding may want to<br />

change to formula milk if they know that their infants are negative or women opting for<br />

formula may want to consider relactation in the event that the infant is HIV positive. This<br />

would still need to occur within the context of adequate infant feeding counselling <strong>and</strong> an<br />

assessment of the individual home circumstances.<br />

• Reduction in cost of <strong>and</strong> use of co-trimoxazole<br />

All infants born to HIV positive mothers are given co-trimoxazole from age 6 weeks until<br />

12 months. Since the large majority of these infants do not require this, some saving <strong>and</strong><br />

a reduction in side effects experienced from the drug can be achieved.<br />

• Earlier entry into infant hiv management protocols<br />

Holistic medical management of an HIV infected child requires that the child’s HIV infection<br />

status be established as early as possible. Prevention of opportunistic infections, treatment<br />

of intercurrent infections <strong>and</strong> emotional support for the child <strong>and</strong> family, derived from<br />

counselling <strong>and</strong> peer groups, improve the child’s quality of life even in the absence of<br />

antiretroviral therapy.<br />

Diagnostic algorithm for the use of nucleic acid testing in the public sector<br />

Guidelines for infant HIV diagnosis, both internationally 6 <strong>and</strong> in the local private sector 7 ,<br />

recommend 2 PCR tests before 12 months of age (the 2 nd PCR is done primarily to confirm<br />

the first PCR result). International experience is that the sensitivity of the DNA PCR at 6 weeks<br />

of age in a non breastfeeding population approaches 98% 3 . Local experience in the Coronation<br />

<strong>PMTCT</strong> infant diagnostic study suggests that a single DNA PCR at 6 weeks, together with a<br />

clinical assessment, yields accurate results 4 . Assuming that the large numbers of HIV affected<br />

children in SA make 2 HIV PCR tests per child unaffordable, an alternative diagnostic protocol<br />

that offers a vast improvement on the current situation is required.<br />

Taking all this into consideration, the following recommendation for infant HIV diagnosis is<br />

made, irrespective of infant feeding status. It is based on the assumptions:<br />

• That visits to the clinics for HIV diagnosis should be timed with routine clinic/immunization<br />

visits, making it cost effective <strong>and</strong> practical for both the state <strong>and</strong> families.<br />

• That HIV results can be given before starting the co-trimoxazole prophylaxis to eliminate<br />

unnecessary long term prophylaxis of HIV negative babies.<br />

• That a concise diagnostic algorithm that is merely an add on to current paediatric<br />

management guidelines (IMCI) can be effectively communicated to all primary care<br />

personnel enhancing its application <strong>and</strong> effectiveness (HIV diagnosis should be one<br />

component of overall child health care).<br />

• That this algorithm would enhance follow-up, care of HIV negative <strong>and</strong> HIV infected<br />

infants <strong>and</strong> allows for measurement of the effectiveness of the <strong>PMTCT</strong> programme.<br />

• That primary health care nurses underst<strong>and</strong> the limitations of a single PCR test at 6 weeks<br />

of age (due to possible sample mix ups <strong>and</strong> post natal transmission of HIV), <strong>and</strong> that they<br />

are able to perform basic clinical assessments that would alert them to the need for further<br />

age-appropriate HIV testing.<br />

31


Proposed Infant HIV Test Timelines<br />

6 weeks 1 st well baby clinic visit<br />

Clinical assessment<br />

HIV DNA PCR test<br />

10 or 14 weeks Timing of 2 nd <strong>and</strong> 3 rd immunization visit<br />

Clinical assessment<br />

HIV DNA PCR result<br />

• PCR positive – child is HIV infected – refer for HIV specific<br />

care, reinforce infant feeding choices + start co-trimoxazole<br />

• PCR negative – mother counseled that child is HIV uninfected<br />

at present <strong>and</strong> educated on feeding practices<br />

Note: test not infallible as breastfeeding <strong>and</strong> other exposure would mean<br />

possible window period infection status {+ specimen mix up possible but<br />

limited (12 months age<br />

AND<br />

• >3 months after breastfeeding has ceased<br />

Positive Children<br />

If no ART <strong>and</strong> no HIV stigmata<br />

• Confirm HIV status by rapid HIV test at 18 months<br />

Note: this test would pick up any children misdiagnosed as positive probably by<br />

specimen mix up at 6 weeks.<br />

Note: It is envisaged that this diagnostic protocol would enable the majority of children (>97%)<br />

to be correctly diagnosed at 6 weeks of age. By reducing the number of children requiring<br />

follow up for HIV by approximately 90% at 10-14 weeks of age, scarce health care resources<br />

can be focused on HIV infected children. Child health care workers would need to maintain<br />

a high index of suspicion in HIV exposed children who present with clinical stigmata of HIV<br />

later on in life in order to diagnose post natal transmission of the virus <strong>and</strong> to refer these<br />

children for appropriate medical management.<br />

Practical Issues Surrounding Implementation of NAT Testing for <strong>PMTCT</strong> follow-up<br />

• The DOH <strong>and</strong> NHLS need to work more closely to leverage their significant, but<br />

currently inefficiently employed, resources to make this diagnostic method deliverable.<br />

• Provinces should be able to decide when to implement alternative testing strategies<br />

depending on their capabilities. In places where rapid tests are not yet available this<br />

should be implemented prior to nucleic acid testing as a basic requirement.<br />

• The same problems experienced already with rapid testing such as stocks running out,<br />

poor quality control, <strong>and</strong> inadequate staff training will occur with an alternative form<br />

of testing. These logistical <strong>and</strong> infrastructural issues should therefore be addressed<br />

before a new method of testing is made widely available otherwise this could worsen<br />

existing services.<br />

• Thorough investigation is needed to determine the adequacy of transport systems to<br />

facilities to enable this form of testing to be undertaken.<br />

• The NHLS laboratory network (>150 nationwide) needs to be exploited <strong>and</strong> staff<br />

trained at all clinics on how to use this system. Currently the NHLS has links to all<br />

antenatal clinics <strong>and</strong> systems in place for transport of specimens to tertiary centers<br />

that have NAT capability. The decision to use NAT would require these logistics to be<br />

effectively mobilized. Currently NAT capability exists in Cape Town, Durban, Bloemfontein,<br />

Johannesburg <strong>and</strong> Pretoria. Consideration to use dried blood spots vs EDTA collection<br />

tubes would need to be investigated. This is a separate discussion that should be held<br />

with the relevant team from the NHLS but is definitely achievable.<br />

32


RECOMMENDATIONS<br />

It is recommended that consideration be given to changing the infant testing policy from rapid<br />

testing at 12 months to nucleic acid testing at 6 weeks. This could be performed utilizing dried<br />

blood spot methods (RNA-PCR) in areas where access to laboratories is difficult. However,<br />

in areas where access to laboratories is not problematic, whole blood should be utilised for<br />

DNA-PCR testing as this is less expensive. The following health systems <strong>and</strong> technical issues<br />

should be addressed in the process of planning for this policy change:<br />

<strong>Health</strong> <strong>Systems</strong> Recommendations<br />

a) Thorough cost analysis of benefits of earlier testing using NAT compared to the current<br />

test system for the <strong>PMTCT</strong> programme. This is currently underway through Coronation<br />

Hospital, <strong>and</strong> data should be available in late 2003.<br />

b) Analysis <strong>and</strong> implementation of logistics around supporting NAT testing through the<br />

NHLS to all clinic sites using either whole blood collection or dried blood spots.<br />

c) Assess the impact of effectively utilising NHLS infrastructure <strong>and</strong> how it will, at the<br />

same time, put in place the systems for viral load monitoring to support government<br />

treatment sites, as the same NAT testing centers <strong>and</strong> logistics would be required for<br />

viral load <strong>and</strong> CD4 monitoring.<br />

d) The counselling associated with the infant HIV test requires greater attention as the<br />

purpose of this test is not simply to determine HIV status but to make decisions regarding<br />

further care <strong>and</strong> support for families.<br />

e) Until such a policy decision can be made, further attention must be given to improving<br />

follow up of infants at routine clinic visits for immunizations <strong>and</strong> other child health<br />

services utilizing the IMCI model.<br />

Technical Recommendations<br />

a) Further comparison of sensitivity <strong>and</strong> specificity of dried blood spots as compared to<br />

whole blood for DNA PCR.<br />

b) Further investigation of the p24 Ag assay by local research groups.<br />

REFERENCES<br />

1. Moodley D, Moodley J. Rapid Testing for Perinatal HIV in Developing Countries.<br />

Unpublished paper, 2002.<br />

2. Centers for Disease Control. Revised Classification System for Human Immunodeficiency<br />

Virus Infection in Children Less than 13 Years of Age. MMWR 1994; 43: 1-10.<br />

3. Benjamin DK. Integration of statistical theory <strong>and</strong> practical clinical expertise. Polymerase<br />

chain reaction testing of the HIV-exposed infant. Minerva Pediatr. 2002;54(2):105-11.<br />

4. Sherman G. Unpublished data, 2003.<br />

5. Report on the National Scientific Consultative Forum on HIV/AIDS, August 2002.<br />

6. Centers for Disease Control. Revised Guidelines for Prophylaxis Against Pneumocystis<br />

carinii Pneumonia for Children Infected with or Perinatally Exposed to Human<br />

Immunodeficiency Virus. 1995; 44 (RR-4): 1-11.<br />

7. Webber LM et al. Diagnosis of Perinatal HIV-1 infection in South Africa. Southern<br />

African Journal of HIV Medicine 2001:5:21-6.<br />

33


6.4 Maternal <strong>and</strong> Infant Follow Up<br />

INTEGRATING HIV CARE INTO PRIMARY HEALTH CARE<br />

The national <strong>PMTCT</strong> protocol stipulates that care must extend beyond the point of delivery for<br />

both mother <strong>and</strong> child. All women are advised to return for a post-natal care visit within 3-<br />

14 days after discharge, every two weeks in the first month <strong>and</strong> once a month thereafter. The<br />

purpose of these visits is to assess the woman for signs of infection, to provide multivitamins<br />

<strong>and</strong> prophylaxis against opportunistic infections, to provide support for exclusive breastfeeding<br />

if this is the chosen feeding method <strong>and</strong> to provide guidance on safe formula feeding <strong>and</strong><br />

formula milk supplies to women who have selected to formula feed. These recommendations<br />

for maternal care are based on the DoH Guidelines for Maternity Care in South Africa.<br />

The recommendations for follow up of infants in <strong>PMTCT</strong> pilot sites are based on the South<br />

African DoH IMCI clinical case management guidelines, which were adapted in 2001/2 to<br />

include care of children infected or affected by HIV/AIDS. This suggests that infants should<br />

be followed up weekly during the first month of life, <strong>and</strong> monthly thereafter, until the age of<br />

twelve months. The purpose of these visits is for growth monitoring, assessment of feeding<br />

difficulties, provision of prophylaxis against opportunistic infections, assessment for clinical<br />

signs suggestive of AIDS, routine immunizations according to the South African EPI schedule,<br />

<strong>and</strong> HIV testing.<br />

Despite the presence of comprehensive guidelines for follow up care, this evaluation found<br />

that very few of the sites are able to provide the appropriate postnatal care required for<br />

women with HIV <strong>and</strong> their families. The challenges to providing follow up care are numerous,<br />

<strong>and</strong> include:<br />

• Difficulties identifying HIV positive women <strong>and</strong> their infants at clinics due to inadequate<br />

tracking mechanisms.<br />

• Many women opting not to disclose their status to clinic staff.<br />

• Poor access to health facilities due to long distances <strong>and</strong> a lack of affordable transport<br />

All facilities were able to provide routine MCWH services, however, additional follow-up care<br />

such as co-trimoxazole prophylaxis, infant testing, support groups, multivitamins, <strong>and</strong> AIDS<br />

care were more difficult, <strong>and</strong> very few facilities are at a stage where they have integrated<br />

these components into primary health care services.<br />

Provinces that have achieved success in following mothers <strong>and</strong> infants, namely the Western<br />

Cape <strong>and</strong> KwaZulu-Natal, have implemented an expansion plan that targets geographical<br />

areas <strong>and</strong> referral systems rather than sites <strong>and</strong> facilities. This enables a hospital <strong>and</strong> its<br />

surrounding feeder clinics to implement <strong>PMTCT</strong> before the service is extended to other hospitals.<br />

This strategy strengthens referral networks within sub-districts to allow for continuity of care<br />

between delivery centers <strong>and</strong> clinics.<br />

Both of these provinces have hired dedicated <strong>PMTCT</strong> staff to assist existing staff with the<br />

additional dem<strong>and</strong>s of this service. In the Paarl site in the Western Cape, the co-ordinator<br />

sends a list to the clinics each month notifying them of the infants due for HIV testing. If these<br />

infants do not attend the clinic during the expected month, a home visit is conducted to trace<br />

these infants. In KwaZulu-Natal the use of community health workers to improve the follow<br />

up of infants is being explored. These are both strategies that are human resource intensive<br />

however; the benefits in terms of monitoring the effectiveness of the programme <strong>and</strong> improved<br />

clinical management of mothers <strong>and</strong> infants may outweigh the costs.<br />

This evaluation found that women who had opted for formula feeding received more frequent<br />

postpartum care than women who chose to breastfeed because they attend health facilities<br />

more frequently to receive formula supplies. However, women opting for breastfeeding seem<br />

to only attend clinics for infant immunizations; they are not routinely followed up for infant<br />

feeding care <strong>and</strong> support <strong>and</strong> to maintain breast health. A key factor hampering follow up<br />

efforts is the reluctance of many <strong>PMTCT</strong> clients to disclose their status to health workers. In<br />

many areas the facility in which initial antenatal HIV testing occurs (frequently a community<br />

health centre), is different from the facility in which well child-care occurs (mostly a clinic<br />

setting). Women may have established a trusting relationship with their lay counsellor in the<br />

antenatal setting <strong>and</strong> may not want to risk disclosing their status to a new group of health<br />

workers in a different setting.<br />

34


TRACKING OF CLIENTS ACROSS SERVICES<br />

This programme collects anonymous, aggregated data. It is therefore difficult to track HIV<br />

positive clients across sites rendering antenatal, delivery <strong>and</strong> child health services while<br />

respecting the need for confidentiality <strong>and</strong> avoiding stigmatisation.<br />

A variety of approaches are being piloted in the respective provinces to improve the tracking<br />

of clients across facilities <strong>and</strong> services. Most pilot sites developed a single tracking number<br />

format for monitoring both mother <strong>and</strong> baby across all feeder clinics in a sub-district. The<br />

problem with this approach is that districts used different tracking systems <strong>and</strong> patients could<br />

therefore not be identified outside of their local health facilities. In addition, the tracking<br />

number/code soon became recognisable as a sign of HIV infection <strong>and</strong> some clients defaced<br />

their cards or failed to bring them for appointments to avoid stigmatisation.<br />

Our findings were that most of the methods used to track clients, despite being attempts to<br />

protect the confidentiality of women, actually served to reinforce stigma <strong>and</strong> silence <strong>and</strong> further<br />

prevented health workers from identifying HIV positive women.<br />

With expansion of an integrated <strong>PMTCT</strong> service across the country, a national unique patient<br />

identifier for tracking of clients while maintaining confidentiality must be developed. Limpopo<br />

province has implemented a coding <strong>and</strong> tracking system across the province that has worked<br />

effectively. The code provides a mechanism to facilitate continuity of care <strong>and</strong> anonymised<br />

identification of HIV status. This approach should be evaluated to determine its applicability<br />

at a national level.<br />

THE ROLE OF POSTNATAL CARE AND SUPPORT<br />

Postnatal care of HIV positive women is important in order to prevent opportunistic infections,<br />

to provide nutrition support, to provide routine care such as family planning, <strong>and</strong> to link<br />

women with other support services. Since many maternal deaths occur in the postpartum<br />

period, good postnatal care can help to ensure the survival of mothers, which is critical to<br />

the survival of their infants 1 . In the initial postpartum period care should centre on the prevention<br />

of postpartum sepsis, provision of multivitamins, provision of information on nutrition, <strong>and</strong><br />

ongoing counselling <strong>and</strong> support for infant feeding. Postnatal infant feeding support is essential<br />

to help mothers overcome difficulties <strong>and</strong> to ensure that the chosen method is practiced safely.<br />

Regarding postnatal nutrition support, preliminary analysis of data from Kenya suggests that<br />

HIV positive women who breastfeed may be at greater risk of weight loss <strong>and</strong> postpartum<br />

mortality than HIV infected women who do not breastfeed 2 . While this finding requires further<br />

research, it strongly suggests that programmes to prevent MTCT should also provide nutrition<br />

support to HIV infected women in the postpartum period, particularly those women who are<br />

breastfeeding their infants.<br />

The involvement of community health workers for postpartum support, as is being explored<br />

in KwaZulu-Natal, is encouraging <strong>and</strong> may serve as a cost effective approach for other<br />

provinces to adopt. WHO 3 places great emphasis on the importance of postpartum support<br />

<strong>and</strong> recommends that at least 90% of HIV infected women should be referred to a support<br />

network.<br />

Ultimately, the destigmatisation of HIV/AIDS at both the community level <strong>and</strong> the health service<br />

level may enable individuals with HIV to feel more comfortable disclosing their status to health<br />

workers. That is certainly a long term aim; however, some strategies will need to be developed<br />

in the short term to promote improved follow up of mothers <strong>and</strong> infants as a means to providing<br />

improved care.<br />

35


RECOMMENDATIONS FOR IMPROVING THE POSTNATAL MANAGEMENT OF<br />

HIV POSITIVE WOMEN AND THEIR INFANTS<br />

• A facility level strategy that integrates follow up care for all HIV positive women <strong>and</strong><br />

their infants into routine primary health care services should be developed.<br />

• Peer support programmes to encourage continuing support, education <strong>and</strong> mentorship<br />

for mothers living with HIV should be encouraged.<br />

• A postnatal visit for mothers <strong>and</strong> infants after one week should be recommended,<br />

together with a greater focus on maternal care during routine visits for immunizations<br />

<strong>and</strong> growth monitoring.<br />

• <strong>Health</strong> workers should be knowledgeable on practical guidelines for the nutritional<br />

management of persons living with HIV/AIDS.<br />

• Faster implementation <strong>and</strong> training of health workers is needed on the new IMCI<br />

guidelines that address issues of follow up care for infants with HIV.<br />

• Appropriate referrals should be provided to community support structures for homebased<br />

care <strong>and</strong> support groups.<br />

RECOMMENDATIONS FOR FURTHER RESEARCH<br />

Research should be commissioned to evaluate the current postpartum care received by HIV<br />

positive women <strong>and</strong> their families who have participated in the <strong>PMTCT</strong> programme. The<br />

research should focus on evaluating the extent to which the current protocol <strong>and</strong> other guidelines<br />

such as IMCI are being followed.<br />

REFERENCES<br />

1. Preble EA, Piwoz EG. Prevention of mother to child transmission of HIV in Africa:<br />

practical guidance for programs. Washington: Academy for Educational Development,<br />

2001.<br />

2. Nduati R et al. Effect of breastfeeding on mortality among HIV-1 infected women: a<br />

r<strong>and</strong>omised trial. Lancet 2001; 357: 1651-55.<br />

3. WHO/UNICEF/UNAIDS. Local monitoring <strong>and</strong> evaluation of the integrated prevention<br />

of mother to child HIV transmission in low-income countries. Geneva: WHO, 2001.<br />

36


6.5 Infant Feeding<br />

Infant feeding remains one of the greatest challenges in the <strong>PMTCT</strong> programme. The<br />

dilemma is that breastfeeding prevents millions of infant deaths each year throughout the<br />

world, but causes at least one-third of all paediatric HIV infections. The HST’s interim<br />

report on the <strong>PMTCT</strong> programme highlighted infant feeding as the major policy issue for<br />

government with a caution that the policy of providing free formula may do more harm<br />

than good in many communities. The report also recommended that a national commission<br />

of experts be established to discuss infant feeding policy in the context of HIV. Such a<br />

commission has not been established; however, at the national scientific consultative forum<br />

hosted by the National DoH <strong>and</strong> HST in August 2002, a group of infant feeding experts<br />

worked together to produce a discussion document with clear policy options for the<br />

government. Members of this team included: Dr Mickey Chopra, Dr Mark Colvin, Professor<br />

Anna Coutsoudis, Ms Tanya Doherty, Dr Nigel Rollins, Dr Haroon Saloojee, Dr Christine<br />

Varga, Professor David S<strong>and</strong>ers, Dr Glenda Gray, Dr David Woods, Dr David McCoy<br />

<strong>and</strong> Dr Ameena Goga.<br />

This chapter presents the key findings of the 2 nd evaluation of the pilot sites, <strong>and</strong> makes<br />

recommendations for an infant feeding policy drawing on this evaluation <strong>and</strong> policy<br />

recommendations of the August 2002 National Scientific Consultative Forum.<br />

BACKGROUND<br />

The advent of HIV <strong>and</strong> the knowledge that the virus can be transmitted through breastmilk<br />

has led to the need for the promotion of breastfeeding to be qualified by information<br />

regarding the risks of HIV transmission through breastmilk. These risks however need to<br />

be weighed up against the immunological <strong>and</strong> nutritional benefits of breastfeeding, <strong>and</strong><br />

the potential dangers of replacement feeding, even for infants born to HIV positive women.<br />

In recognition of the trade-off between harm <strong>and</strong> benefit, a WHO Technical Task Team<br />

has recommended that exclusive replacement feeding should only be encouraged in HIVinfected<br />

women if it is safe, feasible, acceptable, accessible <strong>and</strong> sustainable, but that if<br />

any of these conditions are not met, exclusive breastfeeding should be promoted 1 .<br />

Currently the <strong>PMTCT</strong> pilot programme in South Africa offers free formula milk for a period<br />

of six months to HIV positive women who choose not to breastfeed. With the low follow<br />

up rates displayed in this report, <strong>and</strong> the acknowledgement that routine data cannot be<br />

used to track cohorts of infants, very little is known about the actual infant feeding practices<br />

of HIV positive women nor of the impact of the provision of free formula milk on infant<br />

morbidity or on infant feeding practices in the non-HIV positive population.<br />

37


KEY FINDINGS FROM THE EVALUATION<br />

Infant feeding intentions of HIV positive women in the pilot sites<br />

Public health concerns have been raised about the decision to supply free formula as part of<br />

the package of care for <strong>PMTCT</strong>. The interim report on the <strong>PMTCT</strong> pilot programme noted that<br />

the uptake of free formula varied considerably between sites with similar socio-economic<br />

contexts, <strong>and</strong> that free formula was being taken up by women under conditions that were not<br />

safe or feasible 2 . It was also indicated that some women who were provided with free formula<br />

did not formula feed exclusively, <strong>and</strong> often mixed fed with breastmilk.<br />

This evaluation found evidence of high rates of intentions to formula feed in both urban <strong>and</strong><br />

rural sites. However, intentions to breastfeed have increased during the course of 2002 in<br />

many provinces. Figure 6.5.1 shows the infant feeding intentions that were recorded prior<br />

to discharge for all HIV positive women in the pilot sites during 2002.<br />

Figure 6.5.1: Infant feeding intentions of HIV positive women in the 18 pilot sites,<br />

2002<br />

Average (choices)<br />

Siloam (LP)<br />

Virginia (FS)<br />

Durban (KZN)<br />

Frankfort (FS)<br />

Mankweng (LP)<br />

Pietermaritzburg (KZN)<br />

Rustenburg (NW)<br />

Umzimkulu (EC)<br />

Paarl District (WC)<br />

Kimberley (NC)<br />

Ev<strong>and</strong>er (MP)<br />

Kalafong (GT)<br />

Lehurutshe (NW)<br />

De Aar (NC)<br />

East London Complex (EC)<br />

Shongwe (MP)<br />

Guguletu (WC)<br />

Natalspruit (GT)<br />

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%<br />

Formula Feeding<br />

Breast Feeding<br />

38


An average of 58% of HIV positive women expressed an intention to practice exclusive formula<br />

feeding <strong>and</strong> an average of 42% of HIV positive women intended to practice exclusive<br />

breastfeeding. These rates differ substantially between provinces <strong>and</strong> may be related to<br />

institutional or facility policies, different training initiatives or staff biases towards one or other<br />

option.<br />

Figure 6.5.2: Infant feeding intentions of HIV positive women according to urban/rural<br />

location<br />

%<br />

100<br />

90<br />

80<br />

70<br />

60<br />

50<br />

40<br />

30<br />

20<br />

10<br />

0<br />

Formula<br />

Breast feeding<br />

Rural<br />

Urban<br />

Figure 6.5.2 displays infant feeding intentions according to rural or urban location of the sites.<br />

It is clear that the predominant choice of HIV positive women across both locations is formula<br />

milk. Of concern is the slightly higher rate of intention to formula feed in rural areas compared<br />

with urban areas. In the two most rural sites, Shongwe hospital in Mpumalanga <strong>and</strong> Rietvlei<br />

hospital in the Eastern Cape, the formula feeding intention rates are 90% <strong>and</strong> 69% respectively.<br />

These are marked increases from the first evaluation where the formula feeding intention rate<br />

in Shongwe was 74% <strong>and</strong> in Rietvlei, 54%. In the Rietvlei site, there have been reports of<br />

formula supplies running out <strong>and</strong> generally limited access to formula as only a few of the<br />

feeder clinics maintain supplies.<br />

Despite the increases noted above, the finding in most provinces is that formula feeding<br />

intention rates have decreased since the first evaluation (January to December 2001). The<br />

most marked changes have been seen in the Free State, KwaZulu-Natal <strong>and</strong> Limpopo where<br />

both pilot sites showed a decrease in intentions to formula feed. In the Free State intentions<br />

to formula feed have decreased from 73% to 36%. In KwaZulu-Natal a similar decrease has<br />

been seen from 53% to 41%, <strong>and</strong> in Limpopo formula feeding intentions have decreased 73%<br />

to 37%. In the Western Cape <strong>and</strong> the Northern Cape the rates have decreased but remain<br />

above 70%. The only province showing an increase in formula feeding intention rates across<br />

both sites is the Eastern Cape where the rate increased from 62% to 80%.<br />

The decrease in intentions to formula feed <strong>and</strong> increase in the intentions to breastfeed are due<br />

to a variety of factors including:<br />

• The introduction of infant feeding training for health workers involved in <strong>PMTCT</strong>.<br />

• The stigma associated with the free distribution of formula milk from clinics.<br />

• The unreliable supply of formula to facilities, particularly feeder clinics.<br />

The provinces with the highest rates of breastfeeding intentions; Limpopo (64%), Free State<br />

(64%) <strong>and</strong> KwaZulu-Natal (60%) have all prioritised training on infant feeding counselling.<br />

In addition, the Free State <strong>PMTCT</strong> programme is managed through the MCWH directorate<br />

<strong>and</strong> not the HIV directorate <strong>and</strong> a decision has been made not to supply formula to new<br />

<strong>PMTCT</strong> sites.<br />

39


There is a need for caution when interpreting these rates as these reflect stated intentions.<br />

There is no data on actual feeding practices nor the outcome of infants in relation to feeding<br />

practices as no prospective follow up was undertaken during this evaluation. A prospective<br />

cohort study commissioned by the National Department of <strong>Health</strong> is underway in three sites<br />

to monitor infant feeding practices.<br />

Infant feeding counselling <strong>and</strong> risk assessment<br />

Infant feeding counselling of pregnant women to make appropriate decisions for themselves<br />

is complex. Counselling can influence <strong>and</strong> bias the choice that mothers make regarding infant<br />

feeding practices. Evidence from this evaluation suggests that there is currently significant<br />

inconsistency <strong>and</strong> misinformation in infant feeding counselling at South African <strong>PMTCT</strong> pilot<br />

sites. In particular, we have seen that poor infant feeding counselling seems to lead to high<br />

intentions to exclusively formula feed in places where free formula milk is provided. As indicated<br />

earlier, in provinces where efforts have been made to increase the training of health workers<br />

on infant feeding, such as Limpopo, KwaZulu-Natal <strong>and</strong> the Free State, fewer HIV positive<br />

women choose to formula feed.<br />

In KwaZulu Natal, although the two <strong>PMTCT</strong> sites (Durban <strong>and</strong> Pietermaritzburg) are quite<br />

similar, more women intend to exclusively breastfeed at the Durban site compared with the<br />

Pietermarizburg site (including the rural area which is part of this site). It is possible that<br />

information on the relative risks of HIV transmission through breastfeeding versus the relative<br />

risks of not breastfeeding is presented differently at various <strong>PMTCT</strong> sites. This could be due<br />

to the fact that the <strong>PMTCT</strong> programme has embraced the opinions expressed by influential<br />

staff <strong>and</strong> infant feeding experts in different regions.<br />

The current <strong>PMTCT</strong> protocol for the pilot sites 3 recommends that counselling on safe infant<br />

feeding should take place both antenatally (during the post test counselling session) <strong>and</strong><br />

postnatally before the first feed. Within the antenatal setting, formal counselling is conducted<br />

mostly by lay counsellors. Very little is known about the extent to which nurses or doctors<br />

reinforce infant feeding options during their consultations with clients. The training of lay<br />

counsellors is largely focussed on counselling for an HIV test <strong>and</strong> training typically consists<br />

of a 2-3 week VCT course run by organisations such as ATICC or Lifeline. The infant feeding<br />

component of counselling is inadequately covered in these training courses largely because<br />

the training was designed to prepare individuals to conduct VCT. Attempts by the DoH to focus<br />

more on infant feeding within <strong>PMTCT</strong> training have also been directed at professional health<br />

workers <strong>and</strong> not lay counsellors. This raises serious concerns regarding the ability of lay<br />

counsellors to accurately present infant feeding options to mothers.<br />

Some provinces have made impressive attempts to assist counsellors in the process of assessing<br />

the suitability of infant feeding options. The illustration below was developed in KwaZulu-<br />

Natal <strong>and</strong> was seen used at the rural Church of Scotl<strong>and</strong> site. It provides a list of determinants<br />

that should be assessed in the counselling session to decide on an infant feeding option. Other<br />

international initiatives are also underway to develop similar counselling tools. The World<br />

<strong>Health</strong> Organisation has developed a set of counselling cards to guide health workers through<br />

various stages of antenatal <strong>and</strong> postnatal support for infant feeding. These cards have been<br />

field tested in South Africa <strong>and</strong> will be incorporated into the <strong>PMTCT</strong> <strong>and</strong> infant feeding training<br />

course.<br />

40


Kwazulu-Natal infant feeding assessment guide<br />

Operational problems experienced in the pilot sites<br />

This evaluation found many logistical problems with the supply of free formula milk. There were many<br />

cases of women reporting that they had run out of formula before their next clinic appointment <strong>and</strong><br />

were refused additional supplies before the scheduled follow up date. In addition, the same quota of<br />

milk tins is given irrespective of whether the infant is term or premature. Premature infants have higher<br />

energy requirements <strong>and</strong> need to be fed more frequently in the first few weeks of life to promote<br />

adequate weight gain. Women should therefore be given the appropriate amount of formula for the<br />

infant’s milk requirements to avoid supplies running out before the next scheduled clinic visit.<br />

Some facilities have reduced the amount of formula given to mothers from monthly supplies to fortnightly<br />

supplies out of fears that providing large amounts of stock would promote the sale of formula within<br />

communities. Fortnightly visits to clinics are costly for many women who have to travel long distances<br />

<strong>and</strong> this system may actually serve to promote mixed feeding in order to make supplies of formula last<br />

longer.<br />

There have been reports in many provinces of health workers being unsure of what to advise mothers<br />

regarding infant feeding after six months when the free formula supply ends. The solution adopted in<br />

many areas is to automatically transfer these infants to the PEM (Protein Energy Malnutrition) Scheme<br />

in order for them to continue to receive free milk. This will have serious financial implications for the<br />

PEM scheme. There is a lack of clarity at the national level as to whether infants born to HIV positive<br />

women should be included in the category of ‘high risk’ children <strong>and</strong> thereby qualify for free formula<br />

milk through the PEM scheme.<br />

If free formula milk is to continue being included in the package of care for <strong>PMTCT</strong>, consideration should<br />

be given to extending the period of supply of the free formula to prevent the risk of growth faltering<br />

at the critical time of 6 to 12 months where milk still constitutes a major component of infant nutrition.<br />

There have been instances in the Eastern Cape <strong>and</strong> Mpumalanga where the formula supplies have run<br />

out for periods of up to two weeks. This has serious implications for the nutritional safety of infants <strong>and</strong><br />

reflects poor planning <strong>and</strong> stock control.<br />

There was evidence in a few sites of HIV positive women choosing to purchase formula from local stores<br />

rather than accessing the free formula from <strong>PMTCT</strong> facilities because of fear of Pelargon (the formula<br />

br<strong>and</strong> used for the <strong>PMTCT</strong> programme) being associated with HIV.<br />

These problems highlight the fact that the provision of free formula milk does not ensure exclusive<br />

formula feeding or optimal nutrition for infants as reliable delivery of supplies is not guaranteed in<br />

many settings <strong>and</strong> the management of supplies at facilities does not appear to take into consideration<br />

the needs of mothers <strong>and</strong> infants.<br />

41


Differences in provincial policies<br />

In the absence of a national policy on HIV <strong>and</strong> infant feeding for the non-pilot sites, provinces<br />

have developed their own policies based on their experiences with the pilot sites. As a result<br />

there are various infant feeding policies being implemented across the country. In the Free<br />

State <strong>and</strong> Northern Cape the decision was made not to supply free formula outside of the<br />

pilot sites. The Free State made this decision based on findings from the pilot sites that despite<br />

the availability of free formula milk, women still mix feed with breastmilk <strong>and</strong> formula milk.<br />

It is interesting to note that the MCWH directorates <strong>and</strong> not the HIV directorates in these two<br />

provinces manage the <strong>PMTCT</strong> programme. The Free State has the highest rate of breastfeeding<br />

intention amongst HIV positive women in the pilot sites. This is most likely attributable to the<br />

influence of the MCWH management <strong>and</strong> their commitment to lactation management training<br />

<strong>and</strong> the Baby Friendly Hospital Initiative. The Free State plans to phase out the free formula<br />

from the pilot sites as soon as they receive notification that the pilot sites have ended their<br />

term.<br />

The other seven provinces are supplying free formula to non-pilot sites, however, there are<br />

reports from many sites of poor stock control <strong>and</strong> procurement <strong>and</strong>, in Mpumalanga, of<br />

formula only being available at clinics <strong>and</strong> not hospitals. On discharge, mothers are informed<br />

that they can collect formula from their nearest clinic.<br />

Provinces will continue to develop their own policies in the absence of national guidance which<br />

may be detrimental to infant nutritional safety <strong>and</strong> cause confusion amongst health workers.<br />

DISCUSSION<br />

Concerns about spillover<br />

There have been concerns that the promotion of formula feeding in HIV positive women could<br />

‘spill over’ into the general population 4 . ‘Spillover’ is considered to be increased use of formula,<br />

either earlier introduction, increased use of formula feeds or stopping breastfeeding altogether<br />

in HIV uninfected populations, or populations of unknown HIV status.<br />

Data from Botswana 4 suggests that the provision of free formula by facilities could be perceived<br />

by the general population as an official endorsement of formula feeding as being superior<br />

to breastfeeding. Together with the low levels of knowledge about the value <strong>and</strong> benefits of<br />

exclusive breastfeeding amongst health workers, <strong>and</strong> with the added confusion related to HIV<br />

transmission, the policy could lead to an undermining of breastfeeding promotion <strong>and</strong> a<br />

deterioration of child health outcomes. These concerns have been given further justification<br />

by a UNICEF study of four countries in Southern Africa reporting that uncertainty over HIV<br />

<strong>and</strong> infant feeding was leading to a dangerous demise in support for breastfeeding 5 .<br />

The study in Botswana found that 95% of the women (unknown HIV status) at non-<strong>PMTCT</strong> sites<br />

were breastfeeding, while only 76% of HIV uninfected women at <strong>PMTCT</strong> sites were breastfeeding.<br />

The research concluded that the decrease in breastfeeding amongst uninfected women at<br />

<strong>PMTCT</strong> sites was due to the availability <strong>and</strong> distribution of free infant formula, which indirectly<br />

promotes infant formula as being a good form of feeding.<br />

There is also evidence that the provision of commercial infant formula increases the potential<br />

for, but does not guarantee, exclusive formula feeding. Data from Nairobi, showed that at<br />

least 30% of HIV-infected women who chose to formula feed <strong>and</strong> who were provided with<br />

subsidised formula milk, did not exclusively formula feed 6 . It is possible that when infant<br />

formula is offered free of charge, clients might be tempted to choose formula feeding because<br />

this option would increase the food security of the household <strong>and</strong> not because they are<br />

committed to exclusive formula feeding. Hence the provision of free infant formula might<br />

increase the likelihood of mixed feeding which is thought to be particularly dangerous.<br />

42


There has thus far been no evidence of spillover in South Africa 7 although this will be validated<br />

from a repeat cross sectional survey of infant feeding practices in <strong>PMTCT</strong> <strong>and</strong> control sites<br />

in South Africa which is due to be conducted during 2003. This evaluation found no evidence<br />

of advertising of formula milk within the clinics visited nor of inappropriate dispensing of<br />

formula milk to HIV negative women. Breastfeeding is still recommended by health workers<br />

as the optimal feeding option for HIV negative women.<br />

Weaning <strong>and</strong> rapid cessation of breastfeeding<br />

According to the pilot site <strong>PMTCT</strong> protocol 3 , women who choose to breastfeed should be<br />

counselled to exclusively breastfeed for 4 months <strong>and</strong> to abruptly stop breastfeeding at 4<br />

months. Thereafter they are entitled to receive free infant formula for 2 months.<br />

Very little is currently known about the feasibility of abrupt cessation of breastfeeding within<br />

the South African context; however, experience within the pilot sites indicates that this is very<br />

difficult to achieve due to cultural beliefs regarding length of breastfeeding <strong>and</strong> difficulty in<br />

accessing the free formula supply following early breastfeeding cessation. Abrupt cessation<br />

of breastfeeding at the early age of four months could have serious consequences for the<br />

nutritional status of the infant, especially since access to free formula milk is not guaranteed<br />

in many settings <strong>and</strong> supplies may be erratic.<br />

With recent consideration given to earlier infant testing algorithms, breastfeeding mothers<br />

could potentially know their babies HIV status at 6-weeks of age. One consideration offered<br />

to promote early testing of infants was that mothers could modify feeding practices. Breastfeeding<br />

mothers with HIV positive babies would be offered an opportunity to continue breastfeeding<br />

their babies thus avoiding the need for early weaning. Formula feeding mothers with HIV<br />

positive babies could be offered an opportunity to re-lactate.<br />

An evaluation of a <strong>PMTCT</strong> intervention in the Ndola district, Zambia 10 , showed that although<br />

women’s knowledge of early weaning as a possible means to reduce likelihood of HIV<br />

transmission increased during the study period (from a baseline of 52% to 74% at midterm),<br />

almost 100% of mothers of infants between 6 <strong>and</strong> 12 months old were still breastfeeding at<br />

the midterm evaluation. This evaluation concluded that knowledge of HIV status does not<br />

appear to affect the practice of continued breastmilk beyond 6 months, most likely for economic<br />

<strong>and</strong> social reasons <strong>and</strong> to avoid the stigma associated with not breastfeeding.<br />

Community support for infant feeding<br />

HIV-infected women need to receive ongoing counselling <strong>and</strong> support for whichever infant<br />

feeding choice they make. Research has shown that the likelihood of achieving either exclusive<br />

formula feeding or exclusive breastfeeding are greatly enhanced if proficient support is<br />

available i.e. ongoing counselling <strong>and</strong> emotional / psychological support, which takes into<br />

account the mother <strong>and</strong> family’s concerns <strong>and</strong> difficulties. This has been demonstrated through<br />

numerous studies.<br />

Self-reported exclusive breastfeeding rates of approximately 75% at 3 months have been<br />

achieved in Cato Manor, KwaZulu-Natal (HIV infected population) <strong>and</strong> in Hlabisa, rural<br />

KwaZulu-Natal (general population) with significant support. In Cato Manor the support<br />

consisted of clinic based breastfeeding counsellors who did occasional home visits, while in<br />

Hlabisa the support consisted of regular home visits by well-trained breastfeeding counsellors.<br />

Similar experience has been described in non-HIV positive populations in Mexico 8 <strong>and</strong><br />

Bangladesh 9 , where peer counsellors provided support at regular intervals. In Bangladesh<br />

exclusive breastfeeding rates increased from 9% to 70% at 5 months.<br />

In Zambia exclusive breastfeeding rates after proficient support was provided to women, were:<br />

85%, 87%, 92%, 88% <strong>and</strong> 85% in children aged 1week, 1week-1month, 1-2 months, 2-3<br />

months <strong>and</strong> 3-4months respectively 10 .<br />

43


With only moderate support (one home visit two weeks after delivery, with repeat visits on<br />

an as-needed basis or following a failed clinic appointment – i.e. no regular ongoing counselling<br />

<strong>and</strong> no involvement of community or family members), HIV-infected women in Nairobi provided<br />

with free infant formula reported 70% compliance (i.e. 30% used breastmilk) 6 . 100% compliance<br />

may have been achieved with more intensive support for exclusive formula feeding. In the<br />

breastfeeding arm (defined as any use of breastmilk), in the absence of support <strong>and</strong> against<br />

a background of low exclusive breastfeeding rates in Nairobi, only 9% of women who chose<br />

to breastfeed were exclusively breastfeeding at 6 months. This data indicates that with no or<br />

moderate support it is difficult to achieve exclusive formula feeding, <strong>and</strong> even more difficult<br />

to achieve exclusive breastfeeding.<br />

Community support is especially important for women’s feeding choices in contexts where<br />

decisions are not made by the mother alone, <strong>and</strong> where cultural or family practices are highly<br />

influential in determining ultimate practices. A study of social <strong>and</strong> community perspectives on<br />

<strong>PMTCT</strong> conducted in the Limpopo 11 province found that a common cultural belief in the region<br />

is that babies cry because they do not receive adequate food. In relation to exclusive<br />

breastfeeding, women may experience immense pressure from family members to mix breastmilk<br />

with formula milk in order to ‘satisfy’ the infant. This was confirmed by the finding that 27%<br />

of the individuals interviewed believed that breastmilk alone is not enough for an infant. When<br />

asked about the sources of infant feeding information, respondents cited clinics or nurses as<br />

the most common source of information (57%), followed by mothers <strong>and</strong> gr<strong>and</strong>mothers (36%).<br />

With the kind of social pressure described above, the current system of counselling within the<br />

<strong>PMTCT</strong> programme is clearly inadequate to provide sufficient support to women in their infant<br />

feeding choices. Initiatives outside of the health centre such as community <strong>and</strong> peer support<br />

need to be explored to enhance safer infant feeding practices.<br />

Infant feeding research: The South African National <strong>PMTCT</strong> Cohort Study<br />

In anticipation of possible poor follow up of infants through the routine system, the national<br />

research <strong>and</strong> evaluation framework developed by the <strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong> <strong>and</strong> the National<br />

DoH made provision for a prospective cohort study of mother-child pairs with active followup<br />

<strong>and</strong> case finding to determine the impact of the programme on infant feeding practices<br />

<strong>and</strong> vertical transmission rates. In order to estimate the proportion of children infected postnatally<br />

through breastmilk, the cohort study is designed to track feeding practices <strong>and</strong> to<br />

measure HIV status at 3 weeks, six months <strong>and</strong> nine months postpartum. The study sites are<br />

nearing completion of recruitment <strong>and</strong> results are due in December 2004.<br />

Designing an Appropriate Policy<br />

Given the fact that all provinces are attempting to scale up <strong>PMTCT</strong> services, clear national<br />

policies are required on the promotion of appropriate <strong>and</strong> safe infant feeding in the context<br />

of HIV. Of particular importance is a decision on whether government should extend the pilot<br />

programme protocol of providing free (state subsidised) formula to HIV positive mothers who<br />

choose to exclusively formula feed. As there are still gaps in knowledge, <strong>and</strong> differences in<br />

expert opinion, decisions need to be based on the best available data <strong>and</strong> on the basis of<br />

sound public health arguments.<br />

44


RECOMMENDATIONS<br />

1. Infant <strong>and</strong> Young Child Feeding<br />

a. Promote exclusive breastfeeding in the general population <strong>and</strong> for children already<br />

infected with HIV<br />

• 76% of pregnant women in South Africa are HIV negative. Exclusive breastfeeding<br />

for the first 6 months of life should be aggressively promoted <strong>and</strong> supported<br />

amongst (i) HIV negative women, (ii) women of unknown HIV status, <strong>and</strong> (iii)<br />

HIV infected women who choose to breastfeed.<br />

• The Baby Friendly Hospital Initiative that supports exclusive breastfeeding<br />

amongst the three groups of women mentioned above should be accelerated<br />

– targets for BFHI accreditation of all levels of hospitals in each province should<br />

be promoted <strong>and</strong> set. This will help minimise any potential “spillover” effect<br />

from HIV positive women who choose to formula feed from affecting the<br />

general population.<br />

• The International Code for the Marketing of Breastmilk Substitutes should be<br />

reviewed in South Africa, adapted, legislated <strong>and</strong> enforced. The South African<br />

code is currently a position paper, <strong>and</strong> certain details relating to the distribution<br />

of formula need to be discussed in the South African context.<br />

• Other groups in society e.g. the local community, men, church groups, traditional<br />

leaders etc. need to underst<strong>and</strong> the importance of exclusive breastfeeding for<br />

6 months <strong>and</strong> continued breastfeeding till 24 months for HIV negative women<br />

<strong>and</strong> women of unknown HIV status.<br />

b. Promote exclusive formula feeding (no breastmilk at all) amongst HIV infected<br />

women for whom exclusive formula feeding is acceptable, safe, sustainable, feasible<br />

<strong>and</strong> affordable <strong>and</strong> who have chosen to formula feed after individualised counselling<br />

<strong>and</strong> education<br />

• There is a need to define <strong>and</strong> underst<strong>and</strong> what is meant by “being able to<br />

safely prepare formula”. This will permit more appropriate counselling <strong>and</strong><br />

information to HIV positive mothers who have to choose the best infant feeding<br />

choice for their infant.<br />

• The Baby Friendly Hospital Initiative needs to accommodate the support of<br />

formula feeding amongst HIV positive women who are able to safely prepare it.<br />

2. Provide Better Counselling <strong>and</strong> Information for HIV infected women on infant feeding<br />

options<br />

Under the present social, environmental <strong>and</strong> economic circumstances in South Africa, there<br />

isn’t one single feeding method for all HIV infected women that can be recommended. Hence<br />

all HIV infected women should received appropriate, high quality counselling <strong>and</strong> information<br />

on infant feeding options, <strong>and</strong> support to implement their chosen option.<br />

45<br />

• Accurate <strong>and</strong> consistent messages regarding infant feeding should be provided<br />

at all health facilities, <strong>and</strong> through a public IEC campaign. Information on<br />

formula feeding should only be provided to women known to be HIV positive.<br />

• An unequivocal message that mixed breastfeeding is the worst option for all<br />

mothers <strong>and</strong> children should be delivered in all health facilities <strong>and</strong> through<br />

public IEC campaigns.<br />

• Review the training courses, the preparation of <strong>and</strong> the support for counsellors<br />

<strong>and</strong> health workers who conduct infant feeding counselling.<br />

3. Investment in human resource development<br />

• A greater investment in the effective training <strong>and</strong> continuing support of PHC<br />

health workers <strong>and</strong> lay counsellors is required so that high quality infant<br />

feeding counselling <strong>and</strong> support is provided.<br />

• All facilities implementing <strong>PMTCT</strong> services should have trained nurses <strong>and</strong> lay<br />

counsellors who are able to provide infant feeding counselling <strong>and</strong> support<br />

to women.


4. Ensure on-going Support After Delivery<br />

• HIV-infected mothers who choose replacement feeding, either in the first or<br />

second 6 months of life, should receive proficient continuing support from<br />

health workers to achieve the safest degree of replacement feeding possible.<br />

• HIV-infected mothers who choose to breastfeed should receive proficient<br />

continuing support from health workers to support exclusive breastfeeding.<br />

• Means/models to reduce HIV/AIDS-related stigma, both in general as well<br />

as specifically related to <strong>PMTCT</strong> (i.e. mother or infant testing, choosing<br />

replacement feeding, etc), need to be found.<br />

5. Accelerate research into the provision of HAART to allow safe breastfeeding<br />

Another long-term goal should be the possible provision of HAART (or a variation of HAART)<br />

to all HIV positive mothers in order to improve their general health status <strong>and</strong> to make<br />

breastfeeding safe. Alternatively, providing prophylactic anti-retroviral therapy to babies<br />

during breastfeeding should be explored. Studies assessing these options are underway in<br />

South Africa.<br />

RECOMMENDED RESEARCH<br />

Rapid appraisals<br />

Of feasibility <strong>and</strong> acceptability regarding:<br />

• How formula is used in the households of mothers who accept free formula<br />

feeds.<br />

• To determine how much the provision of free formula influences the choices<br />

around infant feeding practices.<br />

Longer-term studies<br />

• The effect of the provision of free formula on child health.<br />

• To explore the quality of counselling in <strong>PMTCT</strong> sites to determine whether<br />

quality of counselling biases choice.<br />

• To explore ways to increase community acceptance for infant feeding practices.<br />

• To underst<strong>and</strong> how much women in different settings are free to make infant<br />

feeding choices, <strong>and</strong> whether they can sustain that decision within the household.<br />

• Research is needed to develop models for effective stigma reduction in<br />

communities <strong>and</strong> effective community engagement to increase support for<br />

infant feeding.<br />

• As part of stigma reduction, issues of “best practice” surrounding encouragement<br />

of disclosure <strong>and</strong> ensuring (shared) confidentiality on all levels should receive<br />

priority attention.<br />

• Research is needed to determine what modes of cessation of breastfeeding<br />

are feasible, <strong>and</strong> what community attitudes towards these modes of cessation<br />

are.<br />

• Further research is needed to determine the impact of antiretrovirals for mothers<br />

or infants on breastmilk transmission.<br />

46


REFERENCES<br />

1. WHO. New data on the prevention of mother to child transmission (MTCT) of HIV <strong>and</strong><br />

their policy implications. WHO Technical Consultation on Behalf of the<br />

UNFPA/UNICEF/WHO/UNAIDS InterAgency Task Team on MTCT. Geneva: WHO,<br />

2000.<br />

2. McCoy D, Besser M, Visser R, Doherty T. Interim findings on the National <strong>PMTCT</strong> pilot<br />

sites. Durban: <strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong>, 2002.<br />

3. South African National Department of <strong>Health</strong>. Protocol for the eighteen <strong>PMTCT</strong> pilot<br />

sites in South Africa. Pretoria: Department of <strong>Health</strong>, 2001.<br />

4. Willumsen J, Rollins N. Evaluation of infant feeding practices by mothers at <strong>PMTCT</strong><br />

<strong>and</strong> non-<strong>PMTCT</strong> sites in Botswana. Gabarone: UNICEF, 2001.<br />

5. Latham MC, Kisanga O. Breastfeeding <strong>and</strong> HIV: a four country study. Paper presented<br />

at 17th International Congress of Nutrition. Vienna: August 2001, abstract no:<br />

3.03.012.<br />

6. Nduati R, John G, Mbori-Ngacha D, et al. Effect of Breastfeeding <strong>and</strong> Formula Feeding<br />

on Transmission of HIV-1. JAMA 2000; 283: 1167-1175.<br />

7. McCoy D, Goga A, Levin J, Doherty T, Makakole-Nene S, Chopra M, Rollins N. A<br />

baseline survey of young infant feeding practices in the context of HIV in South Africa.<br />

Durban: <strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong>, 2003.<br />

8. Morrow AL, Lourdes Guerrero M, Shults J, Calva JJ, Lutter C, Bravo J, Ruiz-Palacios<br />

G, Morrow R, Butterfoss FD. Efficacy of home-based peer counselling to promote<br />

exclusive breastfeeding: a r<strong>and</strong>omised controlled trial. Lancet 1999; 353:1226-1231.<br />

9. Haider R, Ashworth a, Kabir I, Huttly SRA. Effect of community-based peer counsellors<br />

on exclusive breastfeeding practices in Dhaka, Bangladesh: a r<strong>and</strong>omised controlled<br />

trial. Lancet 2000: 356:1643-1647.<br />

10. Kuhn L et.al. Uptake of interventions to reduce mother to child transmission of HIV:<br />

Nevirapine <strong>and</strong> exclusive breastfeeding in the Zambia Exclusive breastfeeding study.<br />

International AIDS Conference: Barcelona 2002, TuOrB1177.<br />

11. Varga C. The social context of <strong>PMTCT</strong>. Report from the scientific consultative forum<br />

on HIV/AIDS. South Africa, August 2002.<br />

47


6.6 <strong>Health</strong> Care Infrastructure<br />

This section discusses key areas of health care infrastructure namely human resources,<br />

management, information systems <strong>and</strong> management of consumables <strong>and</strong> supplies. The pilot<br />

sites have highlighted the importance of leadership <strong>and</strong> effective management as key components<br />

of a successful <strong>PMTCT</strong> programme. This is not surprising given the fact that this programme<br />

has required extensive planning <strong>and</strong> management of additional budgetary allocations,<br />

recruitment of new staff (lay counsellors), training of health workers, additional health<br />

information, the supply of test kits, formula <strong>and</strong> nevirapine, referral networks between delivery<br />

centres <strong>and</strong> clinics, <strong>and</strong> the involvement of NGOs <strong>and</strong> communities.<br />

6.6.1 Human Resources<br />

A. COUNSELLING<br />

Counselling <strong>and</strong> testing for HIV, the entry point to <strong>PMTCT</strong> services is a difficult <strong>and</strong> timeconsuming<br />

procedure. As a consequence the availability of lay counsellors to support health<br />

workers is a cornerstone of the <strong>PMTCT</strong> programme. This section will outline the key findings<br />

relating to the human resource requirements for counselling as well as providing recommendations.<br />

Key Findings from the Evaluation<br />

Management of lay counsellors<br />

All provinces have made attempts to hire lay counsellors to support <strong>PMTCT</strong> counselling. The<br />

approaches used to employ <strong>and</strong> manage lay counsellors have differed greatly between<br />

provinces. There are large differences in remuneration between <strong>and</strong> within provinces as can<br />

be seen from the table below.<br />

Table 6.6.1: Employment <strong>and</strong> Management of lay counsellors<br />

Province<br />

Monthly salary of lay<br />

Who pays the<br />

Management by<br />

counsellors<br />

counsellors, NGO or<br />

NGO or<br />

province/local<br />

province/district<br />

authority<br />

Eastern Cape<br />

R500 paid to counsellors<br />

District Councils<br />

District Councils<br />

in East London, not paid at<br />

other sites yet.<br />

Free State<br />

R500<br />

NGO (NPPHCN)<br />

NGO (NPPHCN)<br />

Gauteng<br />

R 800<br />

Regions<br />

Regions<br />

KwaZulu-Natal<br />

R 2900<br />

Province<br />

Province<br />

Limpopo<br />

R1500 (only paid from<br />

NGO<br />

NGO<br />

November 2002)<br />

Mpumalanga<br />

R 500- planned salary for<br />

NGO<br />

NGO<br />

lay counsellors, not<br />

currently paid except in<br />

Evader where they are<br />

paid R1300.<br />

North West<br />

No salary<br />

No salary<br />

Province<br />

Northern Cape<br />

R500<br />

Province<br />

Province<br />

Western Cape<br />

R2000<br />

NGO<br />

NGO<br />

48


The monthly salaries for lay counsellors range from R2900 in KwaZulu-Natal to R500 in<br />

the Free State, Northern Cape <strong>and</strong> Eastern Cape. In addition to differences between<br />

provinces, differences within provinces also exist. In Mpumalanga, the lay counsellors at<br />

the Ev<strong>and</strong>er site are paid R1300 per month yet the provincial plan is for the rest of the<br />

lay counsellors who have not yet been employed to receive R500 per month. Improved<br />

co-ordination is needed to prevent a negative impact on the morale <strong>and</strong> motivation of the<br />

counsellors, <strong>and</strong> high turnover rates.<br />

Provinces such as Gauteng, Northern Cape <strong>and</strong> Ev<strong>and</strong>er, where lay counsellors are paid<br />

between R500-R800 per month are experiencing many problems in retaining trained<br />

counsellors. The counsellors are supposed to work a 20-hour week yet due to large client<br />

loads they are frequently expected to work longer hours without over-time remuneration.<br />

Due to the unco-ordinated nature in which lay counsellors have become part of <strong>PMTCT</strong><br />

services, their supervision has been haphazard <strong>and</strong> unsatisfactory. Some provinces chose<br />

to contract NGOs for the recruitment <strong>and</strong> management of lay counsellors whilst others<br />

allocated the funds to local authorities. There are positive <strong>and</strong> negative aspects to both<br />

of these systems <strong>and</strong> the choice is often dictated by provincial financial management<br />

procedures. However, the situation has resulted in confusion over who is responsible for<br />

the supervision of lay counsellors, the NGO or the health workers in the facilities where<br />

the counsellors work. The identification of specific individuals who would be responsible<br />

for the supervision <strong>and</strong> mentoring of lay counsellors together with clear performance<br />

indicators would improve this situation. In some of the pilot sites the contractual relationship<br />

<strong>and</strong> accountability of NGOs was to the Provincial managers. Local facility managers were<br />

not empowered to address poor performance issues directly with the NGOs or lay<br />

counsellors.<br />

This report shows that many provinces have not yet established a system for the recruitment,<br />

management <strong>and</strong> remuneration of lay counsellors. In Mpumalanga <strong>and</strong> the Eastern Cape,<br />

almost two years since the initiation of the programme, some of the pilot sites still do not<br />

have lay counsellors. Some provinces, particularly the Eastern Cape, North West <strong>and</strong> the<br />

Northern Cape, have cited bureaucratic, administrative <strong>and</strong> labour relations problems<br />

with the recruitment of lay counsellors. The lack of lay counsellors in these provinces has<br />

significantly limited the uptake of HIV testing by pregnant women.<br />

During interviews with provincial managers there were many calls for guidance from the<br />

National Department of <strong>Health</strong> in the employment <strong>and</strong> management of lay counsellors.<br />

No national policy currently exists on the employment of middle level health workers <strong>and</strong><br />

a guiding document laying out minimal criteria for the selection, training, payment <strong>and</strong><br />

performance management of lay counsellors is necessary.<br />

49


Two options exist for the contracting of lay counsellors: direct contracting of individual<br />

lay counsellors to the provincial health department or provincial contracting of NGOs to<br />

supply <strong>and</strong> manage lay counsellors. There are advantages <strong>and</strong> disadvantages with both<br />

of these options. The addition of a new group of civil servants would pose an enormous<br />

challenge in terms of additional administrative work, however this may ultimately be a<br />

more sustainable approach. Contracting lay counsellors through NGOs may result in more<br />

complex management arrangements between district <strong>and</strong> facility managers <strong>and</strong> the NGOs,<br />

however utilising local NGOs may service to improve the site support <strong>and</strong> mentoring of<br />

lay counsellors <strong>and</strong> would facilitate the transfer of funds to local community-based<br />

organisations.<br />

Integration of lay counsellors<br />

Co-operation with <strong>and</strong> acceptance of lay counsellors by other health workers involved in<br />

<strong>PMTCT</strong> has been poor in many sites as lay counsellors have not been integrated into<br />

facilities as members of the health team. The lack of st<strong>and</strong>ardised job descriptions, regular<br />

<strong>and</strong> reasonable compensation, adequate employment conditions <strong>and</strong> a human resource<br />

plan for lay counsellors has contributed to this situation. There have also been reports of<br />

conflict between nurses <strong>and</strong> lay counsellors at some facilities. This is often due to lack of<br />

clarity regarding the role <strong>and</strong> functions of lay counsellors. In some facilities lay counsellors<br />

have been used as general workers to clean clinics. This exploitation of lay counsellors<br />

is no different from the experiences of other lay workers such as community health workers<br />

<strong>and</strong> home based carers. It will only be curtailed with a national human resource plan for<br />

the entire cadre of lay workers. Regular forums where health workers <strong>and</strong> lay counsellors<br />

can share problems <strong>and</strong> concerns should be encouraged.<br />

When the pilot <strong>PMTCT</strong> programme was introduced, it was decided that a specific cadre<br />

of counsellor was necessary to undertake counselling in this context. Many of the <strong>PMTCT</strong><br />

sites were already VCT sites with existing VCT counsellors. In many provinces the recruitment,<br />

employment <strong>and</strong> management of <strong>PMTCT</strong> counsellors differs from that of VCT counsellors<br />

operating within the same facilities. These include differences in salary, working hours<br />

<strong>and</strong> training. This approach only serves to isolate the <strong>PMTCT</strong> programme from other<br />

HIV/AIDS services. There is certainly justification for having specific training requirements<br />

for <strong>PMTCT</strong> counsellors beyond basic VCT counselling, particularly with regard to infant<br />

feeding, however given the general shortages of counsellors within facilities it would be<br />

wise to develop a cadre of counsellors who have the skills to move interchangeably between<br />

VCT, <strong>PMTCT</strong>, STI, or TB services as needed. Certainly greater attention should be paid to<br />

ensuring st<strong>and</strong>ardisation of remuneration <strong>and</strong> salary conditions amongst these lay workers<br />

so that greater integration can be facilitated.<br />

50


Training<br />

Currently, lay counsellor training focuses on counselling skills needed for HIV testing <strong>and</strong> does<br />

not include counselling on infant feeding options. According to the national <strong>PMTCT</strong> protocol<br />

for the pilot sites, infant feeding options should be discussed at the post-test counselling session,<br />

which, is generally undertaken by lay counsellors. There is no specific time in which nurses<br />

are supposed to discuss infant feeding options <strong>and</strong> it is most likely mentioned during routine<br />

antenatal assessments; therefore, if this training is not extended to lay counsellors, we should<br />

be concerned about the accuracy <strong>and</strong> quality of the infant feeding information being given<br />

to clients. The manual currently being developed for health workers should therefore be<br />

adapted to create a version for lay counsellor training.<br />

The involvement of lay counsellors in <strong>PMTCT</strong> should not be seen as abdication of the counselling<br />

role of nurses. Counselling is an integral part of a nurse’s interaction with clients <strong>and</strong> it is<br />

needed far beyond the limited context of HIV/AIDS. Nurses <strong>and</strong> doctors need to be able to<br />

assist with counselling as required, to reinforce infant feeding options during routine antenatal<br />

care <strong>and</strong> to provide supervision <strong>and</strong> mentoring for lay counsellors. However, when the <strong>PMTCT</strong><br />

programme was introduced, the impression was given that nurses require additional training<br />

in counselling in order to provide counselling in the context of <strong>PMTCT</strong>. Training courses for<br />

counsellors range from 10 days to three weeks <strong>and</strong> require staff to be released from services<br />

<strong>and</strong> often to travel long distances to reach training venues. As a result the backlog of nursing<br />

staff who still require counselling training, particularly from rural facilities, is huge. There is<br />

certainly a place for some refresher training in counselling skills for nurses but it seems<br />

unrealistic to expect all nurses involved in antenatal care to attend a course of a few weeks<br />

that would result in a large disruption to services.<br />

There are clinics in the Eastern Cape <strong>and</strong> Mpumalanga that are run by one professional nurse.<br />

These nurses have been unable to attend any counselling training because it would require<br />

the entire clinic to close. Therefore alternative approaches are necessary that could consist<br />

of on-site training over a few days with a focus on counselling skills as well as infant feeding<br />

counselling. In addition, the completion of these courses should not be a pre-requisite for the<br />

establishment of a <strong>PMTCT</strong> programme at a facility, nor should it be a reason to delay expansion<br />

of the programme.<br />

Recommendations<br />

• The supervision, support <strong>and</strong> mentoring of lay counsellors as well as their motivation<br />

in terms of remuneration requires urgent attention.<br />

• Greater involvement of provincial treasury departments may prevent the difficulties<br />

associated with the transfer of funding for the payment of lay counsellors.<br />

• Development of lay counsellor-client ratios is needed to prevent burnout of counsellors<br />

<strong>and</strong> to maintain quality control st<strong>and</strong>ards.<br />

• Lay counsellors require regular on site refresher courses to improve their performance.<br />

Re-training should emphasise the importance of confidentiality.<br />

• Lay counsellors should be given infant feeding training in addition to the training on<br />

pre <strong>and</strong> post HIV test counselling.<br />

• A national guiding document on the employment <strong>and</strong> management of lay counsellors<br />

should be developed to prevent the large disparities between provinces. Salaries should<br />

be commensurate with the level of service provided by the counsellors.<br />

51


B. TRAINING OF HEALTH CARE WORKERS<br />

As with any new health service, introduction of <strong>PMTCT</strong> activities requires training of health<br />

workers to acquire specific knowledge, skills, <strong>and</strong> attitudes. At the same time, facilities must<br />

create an enabling <strong>and</strong> supportive environment that motivates health workers to effectively<br />

apply their learning. These new skills need to be integrated into broader maternal <strong>and</strong> child<br />

health care.<br />

Training in the context of a newly introduced programme requires both a long-term <strong>and</strong> shortterm<br />

approach. The aim of a short-term approach is to prepare front line health workers to<br />

implement <strong>and</strong> manage the new programme, <strong>and</strong> the aim of a long-term approach is to<br />

integrate <strong>PMTCT</strong> training into graduate, postgraduate <strong>and</strong> in-service training courses.<br />

One of the key recommendations from the first evaluation in terms of training was that the<br />

focus of training should shift from HIV counselling <strong>and</strong> testing to greater emphasis on information<br />

relating to infant feeding. The Department of <strong>Health</strong> together with UNICEF have acted on this<br />

recommendation <strong>and</strong> have put a great deal of effort into developing a training course that<br />

focuses on infant feeding counselling.<br />

When the programme was initiated there was no strategic plan to train health care workers,<br />

instead Provinces either tapped into local academic resources or local NGOs to assist with<br />

the training. Some provinces decided to develop their own training guide. As a consequence,<br />

the mode <strong>and</strong> duration of the training undertaken by the provinces varied widely. Limpopo<br />

province together with the National DoH <strong>and</strong> UNICEF designed a 5-day training course that<br />

included more information on infant feeding <strong>and</strong> HIV. The training was done on five consecutive<br />

days following two weeks of VCT training. There was also an attempt to integrate this training<br />

into the IMCI training to prevent duplication of efforts.<br />

The Free State took the national protocol as the basis for in-service training that the MCWH<br />

co-ordinator - tasked with <strong>PMTCT</strong> at the time - <strong>and</strong> her team conducted at each facility<br />

individually with the assistance of academic institutions. The Eastern Cape, Western Cape <strong>and</strong><br />

KwaZulu-Natal relied on NGOs <strong>and</strong> academic institutions to assist with training. The Northern<br />

Cape, North West Province, <strong>and</strong> Gauteng requested assistance from the Peri-natal Research<br />

Unit (PHRU) at the Chris Hani Baragwanath Hospital. Mpumalanga used existing trainers who<br />

were seconded from facilities to facilitate initial training efforts.<br />

In an attempt to co-ordinate <strong>PMTCT</strong> training efforts within the country, the nutrition, HIV/AIDS<br />

<strong>and</strong> child health directorates at the National DoH, convened a meeting in September 2001<br />

to discuss capacity development for <strong>PMTCT</strong> <strong>and</strong> infant feeding. The outcome of this meeting<br />

was the development of a training working group (TWG). The TWG recommended that a two<br />

pronged approach to training be developed: 1) A short-term approach where a consultant<br />

would be seconded from UNICEF to facilitate training in the provinces; 2) a longer term<br />

approach where a tender would be issued to co-ordinate <strong>and</strong> sustain the dem<strong>and</strong> for training<br />

in the provinces.<br />

The training conducted by the UNICEF consultant utilised the WHO/UNICEF Breastfeeding<br />

counselling manual <strong>and</strong> the WHO/UNICEF HIV <strong>and</strong> Infant feeding manual. The training<br />

programme was designed to take place over a period of 5 days with 3.5 days devoted to<br />

effective breastfeeding. All logistical arrangements <strong>and</strong> funding for the training were arranged<br />

by the training co-ordinator at the national DoH.<br />

As the dem<strong>and</strong> for training increased <strong>and</strong> the infrastructure to support training within provinces<br />

was not sufficient, it was decided that a tender would be issued to provide support to provinces<br />

in their efforts to plan <strong>and</strong> co-ordinate <strong>PMTCT</strong> training as per the longer term approach of<br />

the DoH. The Centers for Disease Control <strong>and</strong> Prevention (CDC) agreed to fund this tender<br />

<strong>and</strong> it was issued by the National DoH in May 2002. The tender was awarded to a consortium<br />

consisting of <strong>Health</strong> <strong>Systems</strong> <strong>Trust</strong>, Women’s <strong>Health</strong> Project <strong>and</strong> the University of the Western<br />

Cape.<br />

This section will highlight progress that has been made with <strong>PMTCT</strong> training as well as ongoing<br />

challenges to be addressed.<br />

52


Key Findings from the Evaluation<br />

Training models<br />

The training model adopted for the <strong>PMTCT</strong> <strong>and</strong> infant feeding training supported by the<br />

National DoH <strong>and</strong> UNICEF, was a modified training of trainers approach in which participants<br />

went through a series of attachments to experienced trainers in order to become trainers <strong>and</strong><br />

subsequently course directors. The aim of this model is to develop infant feeding counsellors,<br />

trainers <strong>and</strong> course directors. Ultimately, it was hoped that each province would have a few<br />

qualified course directors <strong>and</strong> a pool of trainers so that they could take control of their own<br />

training plans <strong>and</strong> not be reliant on the national training facilitator.<br />

The main problem with this model is that it takes several weeks before someone is accredited<br />

as a trainer <strong>and</strong> even longer for accreditation as a course director. During 2002, the UNICEFfunded<br />

trainer facilitated at least one training course in every province; by the end of 2002,<br />

4 course directors <strong>and</strong> approximately 70 trainers had been accredited. This is less than optimal<br />

to sustain training in the provinces. However, difficulties were experienced in facilitating the<br />

release of trainers from their clinical duties in order to attend several attachments <strong>and</strong> to travel,<br />

often to another province to attend training. Despite the difficulties developing trainers, a total<br />

of 700 health workers attended the course <strong>and</strong> were accredited as infant feeding counsellors.<br />

These courses take place at an off-site venue, usually a hotel, where several staff from different<br />

facilities gather. There are generally 40 health workers attending each course <strong>and</strong> they need<br />

to travel to the venue <strong>and</strong> be accommodated for a period ranging from one week to two<br />

weeks. This is a very costly approach, one course can cost between R50 000 to R70 000,<br />

<strong>and</strong> results in large disruptions to services.<br />

The use of this model, although effective for developing infant feeding counsellors, is not ideal<br />

for developing trainers due to the lengthy period of attachment to more qualified trainers.<br />

Provinces should consider the option of a dedicated course for training trainers that is separate<br />

from the course to develop infant feeding counsellors.<br />

The Western Cape adopted a different approach to <strong>PMTCT</strong> training that was more focused<br />

on the protocol <strong>and</strong> operational challenges of implementing the programme. This course had<br />

limited detail on infant feeding.<br />

This province has successfully trained all staff working in facilities offering <strong>PMTCT</strong> services<br />

through a two-day on-site training course taught by local experts from the health services <strong>and</strong><br />

academic institutions. The training focuses on underst<strong>and</strong>ing of the <strong>PMTCT</strong> protocol <strong>and</strong><br />

operational issues such as information management.<br />

The two training courses should be seen as complimentary to each other as one is focused<br />

specifically on infant feeding <strong>and</strong> the other on the protocol <strong>and</strong> operational issues. All provinces<br />

should train staff on the <strong>PMTCT</strong> protocol prior to implementing a more focused course on<br />

infant feeding counselling.<br />

During 2003, the Western Cape requested that the national DoH/UNICEF infant feeding<br />

training be held in the province. Two courses have since been held <strong>and</strong> the province plans<br />

to extend this training to include more health workers.<br />

Content of training courses<br />

The main focus of <strong>PMTCT</strong> training in all provinces except the Western Cape has been HIV<br />

<strong>and</strong> infant feeding. There is very little time in the HIV <strong>and</strong> infant feeding course for operational<br />

issues <strong>and</strong> orientation to the <strong>PMTCT</strong> protocol. By contrast, the training in the Western Cape<br />

focuses mostly on operational <strong>and</strong> management issues <strong>and</strong> little time is spent on infant feeding.<br />

There are problems with both approaches <strong>and</strong> a balance is needed between the two focus<br />

areas. Efforts are currently underway to develop a st<strong>and</strong>ardized national <strong>PMTCT</strong> training<br />

manual. This is being written by the training consortium together with the national DoH. The<br />

curriculum will cover 5 days of training with a focus on both the <strong>PMTCT</strong> protocol <strong>and</strong> infant<br />

feeding counselling. It is hoped that the manual will be complete during 2003.<br />

53


Logistical <strong>and</strong> administrative support for training<br />

Interviews with participants <strong>and</strong> key personnel at provincial levels highlighted problems with<br />

communication. This is largely due to the lack of administrative support for the planning<br />

necessary for training.<br />

In Mpumalanga training has been severely delayed due to the lack of administrative <strong>and</strong><br />

management support at the provincial level. Courses have had to be cancelled at late notice<br />

due to lack of authorization for the expenditure. In other provinces the lines of communication<br />

between the provincial, district <strong>and</strong> facility levels are weak resulting in late notification of<br />

training <strong>and</strong> difficulties in getting staff released from their duties.<br />

Many provinces require ongoing support in planning <strong>and</strong> communication to ensure the success<br />

of training efforts.<br />

Accreditation for training courses<br />

There are two issues relating to accreditation: firstly accreditation of the training curriculum<br />

<strong>and</strong> materials <strong>and</strong> secondly accreditation of trainers.<br />

With regard to the curriculum <strong>and</strong> materials, the 5-day HIV <strong>and</strong> infant feeding course designed<br />

by the National DoH <strong>and</strong> UNICEF is currently not accredited by an educational authority.<br />

There have been requests at the national <strong>PMTCT</strong> steering committee meeting for more formal<br />

accreditation from a Technikon or University. This would provide greater motivation for health<br />

workers to attend the training as completion of the course could contribute to higher education<br />

qualifications. This process is likely to take a long time <strong>and</strong> it should not hamper ongoing<br />

training initiatives. An alternative would be to award continuing education points.<br />

Currently, accreditation of trainers is the responsibility of the training co-ordinator at the<br />

national DoH. The approach that has been adopted is to provide certificates signed by the<br />

national DoH to confirm completion of the 5-day course. This is not an ideal system, as<br />

provinces need to take ownership of their capacity development initiatives <strong>and</strong> to have control<br />

over the quality of their trainers. Accreditation of trainers should therefore be a provincial<br />

responsibility <strong>and</strong> based on certain key competencies.<br />

Sustaining training initiatives<br />

The national <strong>PMTCT</strong> <strong>and</strong> infant feeding training is a short-term approach as it targets frontline<br />

health workers in order to prepare them for implementation of the <strong>PMTCT</strong> programme. In<br />

order to sustain training initiatives the focus should be both on training current providers as<br />

well as pre-service individuals.<br />

<strong>PMTCT</strong> training should be included in the core curriculum of all training programs for health<br />

professionals (nurses, doctors <strong>and</strong> allied health professionals). All graduates of training<br />

programs should be informed about <strong>PMTCT</strong> <strong>and</strong> should not require additional in service<br />

training.<br />

A curriculum for <strong>PMTCT</strong> training suitable for introducing <strong>PMTCT</strong> to practicing health care<br />

providers should be developed. The curriculum should be specific to the skills <strong>and</strong> function<br />

of the health care provider.<br />

Recently attention has been paid to a longer-term approach to training. An initiative by the<br />

MCWH <strong>and</strong> Nutrition section of the National DoH resulted in a National Workshop of nursing<br />

institutions in June 2003. The workshop, attended by 52 institutions, focussed on the integration<br />

of various aspects of child health care into curricula. The integration of <strong>PMTCT</strong> <strong>and</strong> IMCI into<br />

curricula was discussed, <strong>and</strong> the MCWH <strong>and</strong> nutrition sections are pursuing this to ensure<br />

sustainability <strong>and</strong> increased skills of health workers.<br />

In order to sustain training efforts, there is also a need to establish a system for monitoring<br />

the quality of training. This would involve setting targets for trainers with regard to how many<br />

sessions they should facilitate over a particular period of time. A system of reporting should<br />

be established in order for a database of participants <strong>and</strong> trainers to be maintained.<br />

54


One of the major problems highlighted by trainers during this evaluation was the fact that<br />

they are not employed as dedicated trainers. They are usually health workers with a full quota<br />

of clinical duties. The only provinces that have hired dedicated trainers are KwaZulu-Natal<br />

<strong>and</strong> the Western Cape; the rest of the provinces rely on health workers who have to accommodate<br />

their training duties within their existing workload. This system relies heavily on the support<br />

of management to allow trainers to be released from clinical duties to facilitate training.<br />

Provinces should explore the possibility of employing dedicated <strong>PMTCT</strong> trainers, especially<br />

at this critical time when the programme is exp<strong>and</strong>ing rapidly. Trainers may need to be<br />

deployed in regions or districts for initial training <strong>and</strong> on-going support during programme<br />

implementation. This may be particularly important as <strong>PMTCT</strong> services are integrated into<br />

MCWH programmes. Once the expansion has occurred, it may not be necessary to have<br />

dedicated trainers but rather fulltime training administrators to undertake the planning <strong>and</strong><br />

co-ordination for training initiatives <strong>and</strong> to provide support to trainers.<br />

Some provinces such as Limpopo, Eastern Cape <strong>and</strong> Mpumalanga are exploring the option<br />

of outsourcing <strong>PMTCT</strong> training. This is due to the problems in sustaining training without<br />

dedicated trainers <strong>and</strong> inadequate administrative support at the provincial level to plan <strong>and</strong><br />

co-ordinate training. It will be important to evaluate these strategies to determine whether they<br />

achieve better outcomes than provincially led training.<br />

Summary<br />

Except for initiatives in KwaZulu-Natal, Limpopo <strong>and</strong> the Western Cape Province, much of<br />

the training on <strong>PMTCT</strong> to date has been driven by the National Department of <strong>Health</strong> together<br />

with UNICEF. The infant feeding <strong>and</strong> <strong>PMTCT</strong> training course has been supported by a UNICEF<br />

consultant <strong>and</strong> planning <strong>and</strong> co-ordination was done by the National DoH. As a result of<br />

these training efforts many provinces have developed skilled <strong>and</strong> experienced trainers. Some<br />

of these trainers have succeeded in initiating training courses in their provinces under difficult<br />

circumstances <strong>and</strong> often with little administrative support. Provincial managers now need to<br />

start taking ownership of this training by supporting their trainers, developing comprehensive<br />

training plans <strong>and</strong> co-ordinating them with other initiatives such as IMCI <strong>and</strong> VCT training.<br />

Provinces should also explore involving local experts <strong>and</strong> institutions in their training as these<br />

could serve as valuable sources of support.<br />

Recommendations<br />

• On-site training should be encouraged rather than residential training, as it<br />

is less expensive <strong>and</strong> less disruptive to services.<br />

• The option of dedicated trainers deployed to regions or districts should be<br />

explored. Alternatively, a dedicated administrative assistant should be engaged<br />

by each province to plan <strong>and</strong> co-ordinate training.<br />

• <strong>PMTCT</strong> training should be included in the core curriculum of all training<br />

programmes for health professionals.<br />

• All registered health professionals should be required to complete a training<br />

programme in <strong>PMTCT</strong> as a condition of professional re-registration.<br />

• The accreditation of trainers <strong>and</strong> training materials requires attention to ensure<br />

adequate competency levels.<br />

• A system for the monitoring of training should be established in each province.<br />

55


6.6.2 Management<br />

A. NATIONAL MANAGEMENT<br />

The National Department of <strong>Health</strong>’s HIV directorate has continued to operate in a difficult<br />

<strong>and</strong> constraining political <strong>and</strong> administrative environment. National leadership <strong>and</strong> management<br />

successfully addressed many requirements to establish the pilot sites, but ongoing management<br />

<strong>and</strong> support to these has not always been adequate, largely because of staffing disruptions<br />

<strong>and</strong> a lack of technical capacity in some areas. The additional requirements of having to<br />

provide guidance <strong>and</strong> support to Provincial expansion of <strong>PMTCT</strong> has been difficult to address.<br />

During the rapid establishment of the 18 national pilot sites in 2001, the National Department<br />

developed a protocol outlining the clinical <strong>and</strong> management aspects of <strong>PMTCT</strong> implementation,<br />

including site preparation, training, counselling, testing, antiretroviral regimen, follow up,<br />

monitoring <strong>and</strong> evaluation <strong>and</strong> project management. This protocol served as a useful tool for<br />

the pilot sites. However, at this point a new National <strong>PMTCT</strong> protocol for expansion beyond<br />

the pilot sites has not yet been developed. The current protocol was designed specifically for<br />

the pilot sites <strong>and</strong> is now outdated as certain policies, such as issuing repeat doses of nevirapine,<br />

have changed. There is therefore a critical need to update all protocols, to develop protocols<br />

where no official ones exist (infant feeding), <strong>and</strong> to make these widely available within the<br />

shortest possible time to support provincial expansion of this programme.<br />

Financial resources for this programme were provided by National through conditional grants.<br />

These grants provided for the appointment of a <strong>PMTCT</strong> co-ordinator in each Province at the<br />

level of a CCLO; the appointment of a data entry clerk, <strong>and</strong> provision for the costs of drugs,<br />

tests <strong>and</strong> formula in each of the pilot sites. The criteria used to determine the conditional grant<br />

allocations to the provinces include adult infection rates (by province), <strong>and</strong> selected annual<br />

antenatal clinic attendance at the two provincial pilot sites. These conditional grants enabled<br />

the establishment of the pilot sites in the absence of provincial resources. Some provinces,<br />

however, experienced difficulties in accessing the funding supplied through these conditional<br />

grants. Problems spending this grant were seen particularly in the Eastern Cape <strong>and</strong> Mpumalanga<br />

who have not succeeded in spending the conditional grant provided for the 2002/3 financial<br />

year. Factors which contributed to these difficulties include management capacity at the<br />

provincial level <strong>and</strong> poor co-ordination between provincial treasuries <strong>and</strong> programme units.<br />

At this stage, provinces need to take greater responsibility for the budgeting <strong>and</strong> financing<br />

of expansion of <strong>PMTCT</strong>, <strong>and</strong> National’s role should shift to one of providing guidance <strong>and</strong><br />

support, <strong>and</strong> integrating financing for <strong>PMTCT</strong> within the existing budgetary channels from<br />

National to provinces.<br />

Procurement of supplies for the pilot sites was facilitated through national tenders with<br />

pharmaceutical <strong>and</strong> medical supply companies. Provinces were instructed to indicate their<br />

specific requirements to the national HIV directorate for the first order of quantities covering<br />

the first two months of the pilot sites. Supplies were delivered either to medical depots or<br />

directly to the pilot sites. Following this initial order, provinces were instructed to take responsibility<br />

for their own procurement although many of the tenders were still held at the national level.<br />

National procurement allows the best prices to be obtained, but has resulted in disruptions<br />

to supply on occasions, <strong>and</strong> backup systems in provinces should be developed to prevent such<br />

supply problems. Additional training <strong>and</strong> support should be focussed on issues of procurement<br />

<strong>and</strong> management of supplies for <strong>PMTCT</strong> co-ordinators <strong>and</strong> provincial managers.<br />

56


Dedicated data collection systems for the pilot sites were developed in 2001, <strong>and</strong> key indicators<br />

were used to monitor progress by National DoH. The completeness <strong>and</strong> quality of this data<br />

however was often problematic, as provinces did not fully own <strong>and</strong> use this data. Some<br />

provinces also indicated that despite submitting regular reports, they did not receive adequate<br />

feedback from national managers. This is discussed in further detail under information systems,<br />

but there is a need for the <strong>PMTCT</strong> information system to collect a minimum data set incorporated<br />

within the District <strong>Health</strong> Information System, <strong>and</strong> for feedback mechanisms for information<br />

<strong>and</strong> reporting between National <strong>and</strong> provinces to be strengthened.<br />

Although National provided adequate guidance <strong>and</strong> support to the pilot sites, provincial coordinators<br />

expressed frustration at the limited national support <strong>and</strong> guidance around strategies<br />

to exp<strong>and</strong> the programme, information requirements for an exp<strong>and</strong>ed programme <strong>and</strong> infant<br />

feeding policy. Expansion strategies <strong>and</strong> a planning framework to assist Provinces would be<br />

useful tools for National to develop with provinces.<br />

Lastly, a national <strong>PMTCT</strong> steering committee was established to provide a forum where all<br />

provinces could meet with the national <strong>PMTCT</strong> managers to provide feedback on implementation<br />

<strong>and</strong> to discuss key operational <strong>and</strong> policy issues. This meeting has been held on a quarterly<br />

basis since 2001, but during 2002 the meetings have not been well attended by provinces<br />

<strong>and</strong> national staff on several occasions. The absence of senior decision makers at these<br />

meetings, has meant that key decisions could often not be made by the committee. As a result,<br />

provinces with active provincial managers have developed their own policies <strong>and</strong> guidelines<br />

whilst others with little capacity struggle to manage even the pilot programme. The meeting<br />

has also attempted to combine national co-ordination <strong>and</strong> technical support in one forum.<br />

This has not always worked effectively, <strong>and</strong> consideration should be given to establishing a<br />

Technical Advisory Forum where technical experts can advise on clinical/technical policy <strong>and</strong><br />

practice, <strong>and</strong> a Co-ordinating Committee which makes decisions <strong>and</strong> implements the programme.<br />

As a rapid scaling up of <strong>PMTCT</strong> services is underway it is critical that clear national policies<br />

are developed on key issues to prevent fragmentation of practices between provinces. The<br />

National DoH could make use of the extensive clinical <strong>and</strong> research expertise in South Africa<br />

to develop comprehensive policies <strong>and</strong> guidelines.<br />

B. PROVINCIAL MANAGEMENT<br />

Sites with the involvement of the highest levels of provincial government <strong>and</strong> health managers<br />

have been the most successful in implementing the <strong>PMTCT</strong> programme. This evaluation found<br />

that the level <strong>and</strong> st<strong>and</strong>ard of leadership <strong>and</strong> management in the <strong>PMTCT</strong> programme varies<br />

greatly between provinces.<br />

Each province, except the Western Cape, employed a provincial <strong>PMTCT</strong> co-ordinator (CCLO)<br />

<strong>and</strong> in most cases a data entry clerk. These were national appointments <strong>and</strong> the contracts ran<br />

from July/August 2001 for one year. There were delays in the renewal of some of these<br />

contracts due to confusion around the devolution of these positions to provincial level. In<br />

addition to the CCLOs, some provinces hired other staff to manage the programme (such as<br />

KwaZulu-Natal <strong>and</strong> the Western Cape), whilst others re-allocated existing staff. The <strong>PMTCT</strong><br />

programme is situated in the provincial HIV directorates in all provinces except for the Northern<br />

Cape <strong>and</strong> Free State where it is situated in the Maternal <strong>and</strong> Child <strong>Health</strong> directorate.<br />

The active interest <strong>and</strong> support of senior managers in the <strong>PMTCT</strong> programme has led to faster<br />

<strong>and</strong> more effective implementation in some provinces such as KwaZulu-Natal, the Western<br />

Cape <strong>and</strong> Gauteng. These provinces have utilised resources to hire dedicated <strong>PMTCT</strong> staff<br />

at provincial level <strong>and</strong> by local government to provide technical support for the expansion<br />

process.<br />

National financing for the programme is in the form of conditional grants. Many provinces<br />

found these difficult to utilise due to problems accessing finances through provincial treasuries<br />

<strong>and</strong> a lack of capacity at provincial level to manage conditional grants. In a few provinces<br />

there was under-spending <strong>and</strong> inappropriate budgeting.<br />

57


C. MANAGEMENT OF CONSUMABLES AND SUPPLIES<br />

The evaluation found evidence of poor management of the procurement <strong>and</strong> supply of test<br />

kits <strong>and</strong> formula milk in several provinces resulting in large disruptions to services. Stock outs<br />

of rapid test kits, formula <strong>and</strong> nevirapine were found in Mpumalanga, Free State <strong>and</strong> the<br />

Eastern Cape. Periods of stock outs ranged from a few days to 2 weeks. The reasons for the<br />

disruptions to these supplies included:<br />

• Short expiry limits on nevirapine tablets <strong>and</strong> syrup resulting in delays while waiting<br />

for new stock<br />

• Poor management of stock procurement at the district <strong>and</strong> provincial levels<br />

• The system used for procurement of drugs <strong>and</strong> supplies for <strong>PMTCT</strong> being separate<br />

from the procurement process for primary level essential medicines<br />

• National level tenders for rapid test kits with inadequate quality control.<br />

In the absence of rapid test kits, blood samples were sent to laboratories for ELISA tests <strong>and</strong><br />

results were only available after several days. This influenced the number of women who<br />

participated in the programme as many did not receive their test results. The poor performance<br />

of the Efoora test kit led to several batches being returned to pharmacy stores <strong>and</strong> lengthy<br />

delays in the receipt of replacement stock. Greater involvement of the National <strong>Health</strong> Laboratory<br />

Service is needed to ensure regular quality control of rapid test kits.<br />

The disruptions in formula supplies have serious consequences for the nutritional safety of<br />

infants as mothers may be forced to mix feed or use limited resources to purchase formula.<br />

The packaging <strong>and</strong> expiry limits of nevirapine tablets <strong>and</strong> syrup also led to some disruptions<br />

in supplies as stocks were frequently labelled to expire a few months after their delivery. With<br />

some sites having very low client loads, much stock wastage occurred as bottles expired before<br />

they could be used <strong>and</strong> had to be returned to the pharmacy while new orders were still<br />

awaited.<br />

The nevirapine syrup is bottled in 20ml bottles, sufficient to treat approximately 33 infants.<br />

In small facilities with a low client load, these bottles usually expire before they can be finished.<br />

The manufacturer should consider packaging the syrup in smaller bottle sizes to prevent this<br />

wastage.<br />

Nevirapine is h<strong>and</strong>led as a schedule 5 medicine in facilities offering <strong>PMTCT</strong> services. This is<br />

most likely done to ensure adequate monitoring of the drug <strong>and</strong> to prevent its misuse. Under<br />

this management system all doses of nevirapine that are dispensed have to be recorded in a<br />

drug register <strong>and</strong> the tablets <strong>and</strong> syrup are kept in a locked drug cupboard at all times. This<br />

system may be preventing access of this essential drug to women who may be eligible for it.<br />

The need to control this medicine should be balanced against the need to provide easy access<br />

to women who need it. Consideration should also be given to including nevirapine on the<br />

national essential drugs list (EDL) <strong>and</strong> st<strong>and</strong>ard treatment guidelines (STGs) as a means to<br />

ease the procurement, use <strong>and</strong> monitoring requirements for this drug.<br />

Improved management capacity at district <strong>and</strong> provincial levels is needed to improve the<br />

supply of consumables to <strong>PMTCT</strong> sites. Decentralised management of tenders with companies<br />

may assist this process as many tenders for consumables such as rapid test kits are still<br />

managed by the National DoH leaving provinces with little control over these procurements.<br />

58


D. MANAGEMENT OF INFORMATION FOR <strong>PMTCT</strong><br />

The data management system for the pilot sites was specifically created for the purpose of<br />

monitoring <strong>and</strong> evaluating the pilot programme in order to determine the feasibility of<br />

implementing a broader programme. There were many data items, a more regular reporting<br />

period <strong>and</strong> reporting was directly to the national HIV directorate. The data collected at the<br />

<strong>PMTCT</strong> pilot sites was aggregated data collected through tick sheets <strong>and</strong> registers. It thus did<br />

not allow for longitudinal analysis of programme outcomes for individual mother-child pairs.<br />

The need to support the development of the information management component of the <strong>PMTCT</strong><br />

project was only identified after implementation of the project in mid 2001. The <strong>Health</strong><br />

Information <strong>Systems</strong> Programme (HISP) was contracted to support provinces in developing<br />

<strong>and</strong> strengthening data h<strong>and</strong>ling processes that would facilitate the analysis, interpretation<br />

<strong>and</strong> use of information to improve management of the project at the local level, <strong>and</strong> monitoring<br />

<strong>and</strong> evaluation at the national level. Training <strong>and</strong> support was provided on data h<strong>and</strong>ling<br />

<strong>and</strong> information management issues. Support was given to information officers, provincial<br />

<strong>and</strong> site co-ordinators, <strong>and</strong> clinical staff involved in the pilot sites. This support achieved<br />

different results in different provinces <strong>and</strong> was influenced by the status of routine data h<strong>and</strong>ling<br />

systems <strong>and</strong> human resource capacity.<br />

This section will highlight the key challenges relating to <strong>PMTCT</strong> information management <strong>and</strong><br />

the implications for programme expansion.<br />

Key Findings from the Evaluation<br />

The evaluation found that the following challenges impacted most profoundly on <strong>PMTCT</strong><br />

information management:<br />

1. Absence of clearly defined <strong>and</strong> st<strong>and</strong>ardised data elements <strong>and</strong> indicators – a <strong>PMTCT</strong><br />

essential dataset.<br />

2. Poor technical infrastructure: lack of access to computers with appropriate software<br />

<strong>and</strong> email connectivity.<br />

3. Limited human resource capacity to enter <strong>and</strong> analyse data.<br />

4. Duplication of recording efforts with numerous data collection tools.<br />

5. Different data h<strong>and</strong>ling <strong>and</strong> flow processes for pilot <strong>and</strong> expansion facilities.<br />

6. Poor data quality.<br />

7. Limited capacity for interpretation <strong>and</strong> use of data for provincial <strong>and</strong> national level<br />

programme monitoring.<br />

Data Elements <strong>and</strong> Indicators<br />

Pilot Sites<br />

The <strong>PMTCT</strong> pilot programme was implemented as a vertical programme with its own data<br />

h<strong>and</strong>ling <strong>and</strong> management structures. At the onset of the <strong>PMTCT</strong> programme, there was an<br />

absence of clearly defined st<strong>and</strong>ardised data elements <strong>and</strong> indicators. Some provinces initially<br />

developed their own registers with additional data items.<br />

The purpose of the pilot sites was to assess the feasibility of implementing a national programme<br />

therefore far more data items were required for these ‘research sites’ than is required for new<br />

sites. During 2001, the national <strong>PMTCT</strong> dataset for the pilot sites was finalised. It consists of<br />

20 data elements from which 13 indicators are calculated.<br />

Substantial problems were encountered with this dataset. Many provinces had already defined<br />

their data elements as they understood them <strong>and</strong> had developed or refined the nationally<br />

suggested data collection tools. These ‘new’ national data elements caused confusion <strong>and</strong><br />

uncertainty, impacting negatively on data quality.<br />

Practical Example 1<br />

Much confusion was created by the data element First Antenatal Visit. Some sites tended to<br />

call these Attendees. It became very difficult to determine what this data element really meant:<br />

was it only those coming for a first ANC visit, or only the first time women were counselled<br />

or did it include everyone who was there that day i.e. ALL ANC visits which then included<br />

the follow up visits.<br />

59


The changes made in data elements <strong>and</strong> their appropriate use dem<strong>and</strong>ed re-training on the<br />

underst<strong>and</strong>ing <strong>and</strong> use of data elements <strong>and</strong> indicators. Extensive ongoing training <strong>and</strong><br />

support on underst<strong>and</strong>ing <strong>and</strong> use of the data elements was done by HISP. Provincial <strong>and</strong> site<br />

steering committee meetings were a valuable forum to review data <strong>and</strong> clarify the meaning<br />

of terms.<br />

Non-Pilot Sites<br />

The plan to exp<strong>and</strong> <strong>PMTCT</strong> activities beyond the pilot sites required the institutionalisation of<br />

data h<strong>and</strong>ling processes. This has resulted in a reduction in the number of data elements <strong>and</strong><br />

indicators used to monitor <strong>PMTCT</strong> services in the non-pilot sites.<br />

Many of the data items chosen for the pilot sites were not collected consistently or accurately.<br />

Experience gained in the pilot phase of the programme has resulted in the adoption of 6<br />

indicators <strong>and</strong> 7 data elements in the integration <strong>and</strong> rollout of <strong>PMTCT</strong> services. These have<br />

been incorporated into the revised National Essential Data Set <strong>and</strong> have been approved by<br />

NHISSA although approval is still pending from the PHRC:<br />

Revised National Essential Data Set for Primary <strong>Health</strong> Care<br />

<strong>PMTCT</strong><br />

Indicator<br />

Numerator<br />

Denominator<br />

Routine Data elements<br />

HIV testing rate<br />

amongst antenatal<br />

women<br />

HIV test done on<br />

antenatal client<br />

First antenatal visits<br />

HIV test done on<br />

antenatal client<br />

HIV positive rate<br />

amongst pregnant<br />

women tested<br />

Antenatal client HIV<br />

positive – new<br />

HIV test done on<br />

antenatal client<br />

Antenatal client HIV<br />

positive – new<br />

Nevirapine uptake<br />

amongst pregnant<br />

women with HIV<br />

Nevirapine dose to<br />

antenatal woman<br />

Antenatal client HIV<br />

positive<br />

Nevirapine dose to<br />

antenatal woman<br />

Nevirapine uptake<br />

amongst babies born<br />

to women with HIV<br />

Nevirapine dose to<br />

baby born to woman<br />

with HIV<br />

Live birth to woman<br />

with HIV<br />

Live birth to women<br />

with HIV<br />

Nevirapine dose to<br />

baby born to woman<br />

with HIV<br />

HIV testing rate of<br />

baby<br />

First HIV test of baby<br />

at 1 year<br />

Live birth to woman<br />

with HIV<br />

First HIV test of baby<br />

(1 yr)<br />

HIV transmission rate<br />

at 1 year<br />

First HIV test of baby<br />

at 1 year positive<br />

First HIV test of baby<br />

at 1 year<br />

First HIV test of baby<br />

at 1 year positive<br />

Technical Infrastructure<br />

The shift from a data collection system to an information management system that would assist<br />

in achieving <strong>and</strong> measuring the objectives of the <strong>PMTCT</strong> programme was facilitated by the<br />

decision to use the District <strong>Health</strong> Information Software (known as the DHIS) as the mechanism<br />

for capturing <strong>and</strong> processing data. The DHIS is accepted as the national st<strong>and</strong>ard for districtlevel<br />

anonymised information systems.<br />

60


Many provinces had captured initial data on excel spreadsheets. This data needed to be<br />

aligned with the new data elements <strong>and</strong> entered into the DHIS. Eighteen months into the<br />

programme, a number of provinces are still using alternative software programmes to capture<br />

<strong>PMTCT</strong> data. Integration of data sets at national level has not occurred.<br />

Staff needed technical training on use of the DHIS. Problems were mainly experienced with<br />

logistical issues such as having no dedicated computer for the <strong>PMTCT</strong> co-ordinator, inappropriate<br />

computer specifications, no access to email, <strong>and</strong> limited support from the provincial HIS<br />

directorates <strong>and</strong> IT sections. Many of these issues, identified early in the programme, have<br />

not yet been satisfactorily addressed. Extensive ongoing training <strong>and</strong> support are still required.<br />

Data is captured by a variety of cadres ranging from clinicians, data entry clerks, district<br />

information officers, provincial <strong>PMTCT</strong> co-ordinators <strong>and</strong> HISP facilitators. The varied skill<br />

levels <strong>and</strong> knowledge impacts on data quality.<br />

Human resource capacity<br />

Although the conditional grants to provinces made provision for the appointment of a dedicated<br />

data entry clerk, not all provinces made this appointment. In the absence of a dedicated<br />

person to h<strong>and</strong>le data for the programme, existing staff at district <strong>and</strong> provincial levels took<br />

responsibility for <strong>PMTCT</strong> data. Many of these individuals did not have the skills to enter data<br />

into the chosen software. Capacity to interpret data <strong>and</strong> provide feedback to site managers<br />

was also limited.<br />

Data collection tools<br />

The primary purpose of the range of registers <strong>and</strong> forms provided by the National DoH was<br />

to facilitate data collection <strong>and</strong> submission to provincial <strong>and</strong> national levels. Maternal health<br />

<strong>and</strong> VCT services, as vertical programmes, have their own data h<strong>and</strong>ling systems, with most<br />

provinces keeping separate VCT, antenatal, delivery (maternity) <strong>and</strong> child health registers.<br />

The large number of data collection tools developed for the pilot sites resulted in substantial<br />

duplication of recording efforts. This impacted negatively on data quality. Additional problems<br />

identified included:<br />

• General access to records<br />

• Maintenance of confidentiality<br />

• Ability of facilities to track clients across services.<br />

It was imperative that the number of data collection tools be reduced <strong>and</strong> streamlined for nonpilot<br />

sites in order to facilitate staff buy-in <strong>and</strong> commitment to recording of good quality<br />

relevant data for use in local monitoring. This was particularly relevant in light of the need<br />

to exp<strong>and</strong> <strong>and</strong> scale up <strong>PMTCT</strong> services across all health facilities.<br />

In light of the plan to exp<strong>and</strong> <strong>PMTCT</strong> activities, mechanisms are being explored to integrate<br />

<strong>PMTCT</strong> information into existing records, specifically VCT, maternal health <strong>and</strong> child health<br />

records. A number of provinces are piloting a range of individualised patient registers that<br />

will enable monitoring of client care while ensuring patient confidentiality. These tools also<br />

facilitate continuity of care across services, districts <strong>and</strong> provinces. An example of the<br />

consolidated <strong>PMTCT</strong> register can be found in Appendix 6.6.<br />

Practical Example 2<br />

In the Free State <strong>and</strong> Mpumalanga provinces the number of data collection tools was reduced<br />

by consolidating recording efforts into a single register for antenatal <strong>and</strong> child health services.<br />

The delivery register was adapted to record HIV test done (not status) <strong>and</strong> NVP dispensed for<br />

both mother <strong>and</strong> baby. Existing tally sheets used in PHC facilities were adapted to collect<br />

aggregated <strong>PMTCT</strong> data.<br />

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Data flow<br />

The <strong>PMTCT</strong> pilot programme, as a vertical programme, established a separate data flow<br />

process that ran parallel with the existing routine PHC information system. Generally, data<br />

was submitted by facilities to the pilot site co-ordinator for correlation <strong>and</strong> validation. This<br />

data was then submitted by the site co-ordinator to either the district or provincial level for<br />

capture on the DHIS. Once captured the data was submitted by the provincial co-ordinator<br />

to the national HIV directorate. The absence of a dedicated officer at the national level to<br />

receive, process <strong>and</strong> disseminate data has impacted negatively on their ability to respond<br />

proactively to identified systemic <strong>and</strong> infrastructural problems. Mechanisms are currently being<br />

established to integrate <strong>and</strong> formalise <strong>PMTCT</strong> data h<strong>and</strong>ling processes for the exp<strong>and</strong>ed<br />

<strong>PMTCT</strong> programme within established routine PHC data collection systems.<br />

Data quality<br />

This report has required an in-depth scrutiny of the <strong>PMTCT</strong> data. The analysis of both raw<br />

<strong>and</strong> indicator data has highlighted substantial data quality problems. Despite ongoing training<br />

<strong>and</strong> support, poor data quality with regard to data completeness, correctness <strong>and</strong> consistency<br />

demonstrates the gap between collection of data <strong>and</strong> its use in local level monitoring of service<br />

delivery.<br />

Ongoing problems are experienced with correlation of datasets submitted at various time<br />

periods to the site, district <strong>and</strong> provincial levels. Review of data in order to improve data<br />

quality has meant that data corrections are often made some months after submission. Various<br />

levels have different datasets with no one being sure which dataset is the most recently<br />

validated. Identified data errors are followed up at site level. The corrected data submitted<br />

is often completely different from the original dataset. Determining the correct dataset is a<br />

challenge.<br />

Practical Example 3<br />

Where data quality was suspect, other routine data collected by the site was examined. For<br />

example, the number of 1st ANC visits recorded in the <strong>PMTCT</strong> data set should be the same<br />

as the number of 1st ANC visits reported by the facility for the PHC dataset. In a number of<br />

instances this was found to be different. Part of the problem was that the PHC <strong>and</strong> <strong>PMTCT</strong><br />

reporting cycle dates were different. The staff were required to use different time periods for<br />

the same data elements collected. This made assessment <strong>and</strong> correction of the data problematic.<br />

Interpretation <strong>and</strong> Use of Information for Local Management<br />

Data <strong>and</strong> indicators were extracted at provincial level for reporting to the provincial <strong>and</strong><br />

National <strong>PMTCT</strong> Steering Committee meetings in the form of tables <strong>and</strong> graphs. There was<br />

a focus on the development of reports, which facilitated data quality review <strong>and</strong> cross-site<br />

trend comparisons. Although this led to an improved underst<strong>and</strong>ing of data element <strong>and</strong><br />

indicator definitions, there was limited discussion on underst<strong>and</strong>ing the potential use of the<br />

data to improve management of the programme at site level. Extensive training <strong>and</strong> support<br />

is still required. Regular feedback to sites on their performance is generally poor. Formalisation<br />

of feedback mechanisms is needed.<br />

There was a feeling amongst site co-ordinators that data was collected because ‘national’<br />

required it for research purposes <strong>and</strong> not for monitoring progress in the sites. Discussion on<br />

cross-site comparisons focussed on addressing data h<strong>and</strong>ling problems. Data was used in site<br />

meetings for discussions on logistical service issues; however, monitoring <strong>and</strong> evaluation of<br />

coverage, quality <strong>and</strong> effectiveness of service delivery was limited.<br />

Practical Example 4<br />

The NVP dispensing rate to HIV positive pregnant women is a key indicator of service coverage.<br />

Staff recorded nevirapine dispensed to HIV positive pregnant women either at ANC clinics<br />

or at the point of delivery. In many cases the data was collected <strong>and</strong> recorded at both sites.<br />

This indicator demonstrated both gaps <strong>and</strong> double counting. As staff were not involved in<br />

data analysis <strong>and</strong> decision making, they failed to realise that the nevirapine dispensing rate<br />

was not an accurate way to monitor actual nevirapine uptake by women.<br />

62


A number of factors impacted negatively on the ability of sites to monitor their own performance<br />

for key indicators:<br />

• The lack of clearly defined objectives <strong>and</strong> targets<br />

• Lack of an operational plan specifying exactly what facilities were expected to achieve<br />

• Poorly established management infrastructure for local responsibility <strong>and</strong> decision making.<br />

At provincial level, co-ordinators have demonstrated the application of data in management<br />

of the <strong>PMTCT</strong> programme. A number of provinces have developed targets for some key<br />

indicators <strong>and</strong> have presented this information at provincial <strong>and</strong> national steering committee<br />

meetings. Mechanisms are being established to enable provinces to assess their performance<br />

<strong>and</strong> take management decisions. This process must be exp<strong>and</strong>ed to facilitate local level<br />

monitoring. Staff must be trained to underst<strong>and</strong> the role of data in facilitating local level<br />

monitoring <strong>and</strong> evaluation of service delivery.<br />

Conclusion<br />

Inherent problems associated with routine information systems have been brought sharply into<br />

focus with the implementation of an information management system for <strong>PMTCT</strong>.<br />

There is an urgent need for guidelines on the integration of the essential <strong>PMTCT</strong> dataset into<br />

routine district health information systems to prevent the capturing of excessive amounts of<br />

data <strong>and</strong> continued reporting directly to provincial <strong>and</strong> national levels.<br />

Substantial progress has been made on st<strong>and</strong>ardisation of <strong>PMTCT</strong> data h<strong>and</strong>ling processes.<br />

The next step is to strengthen the organisational capacity of the health service to manage an<br />

integrated <strong>PMTCT</strong> data h<strong>and</strong>ling process in primary health care services. The focus of training<br />

<strong>and</strong> support should be on facilitating local level monitoring of service delivery. Implementation<br />

of a reduced dataset, that is integrated into the national essential data set for PHC, with clearly<br />

defined objectives <strong>and</strong> targets, will facilitate improved <strong>PMTCT</strong> management.<br />

Recommendations<br />

• It is recommended that the original pilot sites discontinue collecting the research data<br />

elements. These pilot sites have been operational for two years <strong>and</strong> many lessons have<br />

been learnt. The continued collection of research data at these sites is no longer necessary<br />

<strong>and</strong> may serve to confuse provinces regarding data requirements for this programme as<br />

the service becomes more widely available.<br />

• Improved capacity at national <strong>and</strong> provincial levels to interpret data <strong>and</strong> provide feedback<br />

to programme managers is urgently required.<br />

• Data items <strong>and</strong> indicators should be based on the targets <strong>and</strong> objectives of district, provincial<br />

<strong>and</strong> national plans for <strong>PMTCT</strong>.<br />

• Data flow mechanisms should be streamlined <strong>and</strong> integrated into the routine district health<br />

information system<br />

• The number of data collection tools should be reduced <strong>and</strong>, as far as possible, combined<br />

with existing tools such as maternity registers.<br />

• The design of data collection tools should allow for the specific needs of individual provinces.<br />

• A national unique identifier is required for tracking of clients across facilities <strong>and</strong> provinces.<br />

• Extensive ongoing training <strong>and</strong> support is required to improve data quality <strong>and</strong> interpretation.<br />

• Ongoing training is also recommended on the use of information for local level monitoring<br />

of service delivery<br />

63


Appendix 6.6<br />

MTCT REGISTER (to be kept in the antenatal unit)<br />

SITE: FACILITY: PAGE NUMBER:<br />

Register<br />

Number<br />

Date of Entry<br />

month & year<br />

Name<br />

full name & surname<br />

Facility ID<br />

folder number<br />

MTCT ID<br />

tracking number<br />

CCVT<br />

NVP<br />

administered Comment<br />

Pre Post 1 Post 2<br />

result<br />

home labour<br />

MODIFICATIONS: * sites may choose not to write in name of mother – use just folder & tracking numbers<br />

for follow up<br />

INFANT REGISTER (to be kept in all PHC facilities where babies are monitored)<br />

SITE: FACILITY: PAGE NUMBER:<br />

b1 st HIV test<br />

@ 1 year<br />

2 nd HIV test<br />

confirmatory<br />

Register<br />

Number<br />

Date of Entry<br />

month & year<br />

Name<br />

full name & surname<br />

Facility ID<br />

folder number<br />

MTCT ID<br />

tracking number<br />

NVP<br />

given<br />

Bactrim<br />

started<br />

Month &<br />

year<br />

Mode of Feeding<br />

B=Breast<br />

F=Formula<br />

M=Mixed<br />

123456789<br />

MODIFICATIONS: * sites may monitor mode of feeding for 12 months & /or add a comment field<br />

64


6.7 Scaling up <strong>and</strong> Integrating <strong>PMTCT</strong> Initiatives<br />

A PUBLIC HEALTH OVERVIEW OF <strong>PMTCT</strong><br />

Efforts to prevent MTCT should relate to, <strong>and</strong> be considered within, the entire spectrum of<br />

HIV/AIDS primary prevention, care, <strong>and</strong> support activities, as shown in Table 6.7.1.<br />

Table 6.7.1: MTCT <strong>and</strong> the prevention to care continuum 1<br />

PRIMARY PREVENTION OF<br />

HIV/AIDS IN ADULTS:<br />

• Promotion <strong>and</strong> provision of<br />

condoms<br />

• Behavior change<br />

communication (including<br />

education <strong>and</strong> involvement of<br />

partners, families, <strong>and</strong><br />

communities; life-skills <strong>and</strong><br />

other programs targeted to<br />

youth)<br />

• Prevention <strong>and</strong> treatment of<br />

sexually transmitted diseases<br />

• VCT<br />

CORE INTERVENTIONS FOR<br />

THE PREVENTION OF MTCT:<br />

• Comprehensive MCH<br />

services (antenatal, postnatal,<br />

<strong>and</strong> child health)<br />

• VCT<br />

• Improved breastfeeding<br />

<strong>and</strong><br />

alternative infant feeding<br />

counselling & practices<br />

• Optimal obstetric care<br />

• Short-course ARV<br />

prophylaxis<br />

• Family planning<br />

CARE AND SUPPORT:<br />

• Postpartum care for mothers<br />

(including family planning)<br />

• Postpartum care for infants<br />

(including identification,<br />

treatment of, <strong>and</strong> palliative<br />

care for AIDS-related<br />

conditions)<br />

• Social support for families<br />

<strong>and</strong> communities affected by<br />

HIV/AIDS, especially orphans<br />

<strong>and</strong> vulnerable children<br />

• Support to carry out infant<br />

feeding decisions<br />

Core <strong>PMTCT</strong> interventions are those that directly prevent MTCT during pregnancy, labour <strong>and</strong><br />

delivery, <strong>and</strong> during the postpartum period for women who are already HIV-infected. The<br />

core interventions listed in Table 6.7.1 are those that are known today to be the most effective<br />

for identifying HIV infected women <strong>and</strong> for reducing the risk of HIV transmission during each<br />

of these periods. The core interventions listed above are either general (applied to all pregnant<br />

women) or specific (require information on HIV status of mothers).<br />

The main objectives of the core <strong>PMTCT</strong> interventions are to:<br />

1. Reduce HIV transmission from mother to child<br />

2. Reduce infant <strong>and</strong> child morbidity <strong>and</strong> mortality (AIDS specific <strong>and</strong> overall)<br />

3. Identify <strong>and</strong> care for HIV positive mothers<br />

4. Strengthen HIV/AIDS awareness <strong>and</strong> response in health services <strong>and</strong> the community.<br />

These core interventions for <strong>PMTCT</strong> cannot <strong>and</strong> should not all be achieved at once. What<br />

matters most for any preventive intervention is high coverage of the target population with<br />

the basic steps, as soon as possible. Simple measures applied to a whole population will save<br />

more lives than complex interventions applied to a limited population. If a step-wise plan is<br />

followed, that includes the provision of free formula, the first step in ensuring coverage of the<br />

population is to exp<strong>and</strong> access to nevirapine to women already known to be HIV positive,<br />

followed by an expansion of existing counselling <strong>and</strong> testing services, including counselling<br />

on infant feeding, <strong>and</strong> then the provision of free formula, if this is suitable for the programme.<br />

The stage at which facilities move from one level of the programme to the next is dependent<br />

on human, physical <strong>and</strong> management infrastructure. However, the ability of a facility to offer<br />

a comprehensive service should not hamper it from offering nevirapine alone to women of<br />

known HIV positive status.<br />

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The key to high coverage of the interventions is to integrate them progressively into the st<strong>and</strong>ard,<br />

ordinary package of maternal <strong>and</strong> child care. In the South African setting, attempts are being<br />

made to integrate <strong>PMTCT</strong> into routine maternal <strong>and</strong> child health care. The programme has<br />

however been introduced in pilot sites initially, to identify operational constraints to implementation.<br />

Progress with expansion was therefore initially slow, but a Constitutional Court ruling <strong>and</strong><br />

National decision in April 2002 to exp<strong>and</strong> the programme beyond the pilot sites, has facilitated<br />

a fairly rapid expansion in some provinces.<br />

REVIEW OF THE PILOT STRATEGY<br />

The approach adopted in South Africa was to initiate the national <strong>PMTCT</strong> programme through<br />

pilot sites in order to assess the feasibility of implementing the programme under routine health<br />

service conditions, <strong>and</strong> to learn lessons from these sites.<br />

• As a national pilot programme, national co-ordination was a necessity to fast track<br />

the process, with dedicated budgets, nationally financed provincial co-ordinators, <strong>and</strong><br />

nationally defined information systems to monitor progress in the pilots. Ownership<br />

of the programme at provincial level in several provinces was therefore poor. This was<br />

evidenced in the reliance of provinces on nationally appointed provincial CCLOs to<br />

manage most aspects of the programme. Although the pilots provided an opportunity<br />

to develop provincial capacity, this did not happen sufficiently. This was reflected in<br />

the limited or lack of training plans, inadequate expansion plans, limited local use of<br />

date collected <strong>and</strong> limited participation by local clinicians <strong>and</strong> academics except in<br />

the Western Cape <strong>and</strong> KwaZulu-Natal. In order to facilitate expansion, the national<br />

focus on the pilots should now be shifted to providing support for provincial capacity<br />

development, planning <strong>and</strong> ‘ownership’ of exp<strong>and</strong>ed <strong>PMTCT</strong> programmes.<br />

• A national protocol was developed to guide implementation in the pilot sites. Sections<br />

of this protocol, although relevant in the past, are no longer relevant, <strong>and</strong> should<br />

be updated using new scientific evidence <strong>and</strong> lessons learnt from the pilot sites. As a<br />

national protocol or guideline has not yet been developed for expansion of <strong>PMTCT</strong>,<br />

this is an urgent requirement to support expansion beyond pilot sites.<br />

• ‘Expansion’ or ‘rollout’ should not simply be interpreted as a process of reproducing<br />

pilot sites. Many lessons of how to <strong>and</strong> how not to implement have been learnt in these<br />

sites. These experiences should be used to inform national <strong>and</strong> provincial planning<br />

<strong>and</strong> support for expansion. Alternative models of exp<strong>and</strong>ing <strong>PMTCT</strong> also need to be<br />

explored whereby other ‘best practice’ models, developed in provinces that have<br />

already exp<strong>and</strong>ed, can be used to inform expansion.<br />

• Pilot sites run the risk of becoming victim to the ‘pilot syndrome’: the phenomenon of<br />

a micro-managed, over-resourced ’demonstration model’ that cannot be replicated<br />

under routine service conditions. Some provinces are finding the attempt to reproduce<br />

all-or-nothing pilot sites to be beyond their capacity <strong>and</strong> budgets, leading to delays<br />

<strong>and</strong> frustration among staff. Under such circumstances, alternative strategies such as<br />

a phased expansion, either on a geographical basis (areas of highest HIV prevalence<br />

first), levels of care (hospitals rather than primary care facilities in their drainage area),<br />

or by level of intervention (ensuring that VCT or nevirapine is provided uniformly first),<br />

should be considered as alternatives to the ‘all or nothing’ approach to expansion.<br />

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• ‘Readiness criteria’ applied to non-pilot facilities, before they are allowed to use nevirapine,<br />

may prevent women from accessing this treatment as facilities feel compelled to meet<br />

numerous criteria before providing care. A limited approach of providing women with<br />

nevirapine only should be allowed in cases where facilities are not able to provide a<br />

comprehensive service.<br />

• The practice of providing free infant formula is not working in many sites. There is lack<br />

of clarity over the policy to be followed for programme expansion, inadequate counselling<br />

of mothers, <strong>and</strong> irregular supplies to many facilities. The impact of this may be detrimental<br />

to breastfeeding practises <strong>and</strong> infant well-being. In the expansion this is a critical policy<br />

issue that must be clarified using scientific evidence applied to the South African context.<br />

A new policy should take into consideration the Code of Marketing of Breastmilk Substitutes<br />

<strong>and</strong> sustainable procurement of supplies.<br />

KEY LESSONS TO FACILITATE EXPANSION OF <strong>PMTCT</strong><br />

South Africa needs to ensure rapid coverage of the target population with the important<br />

elements of <strong>PMTCT</strong>. The end result, as for an immunisation programme, must be implementation<br />

at all health facilities. There are numerous ways of achieving this in a cost-effective manner:<br />

Policy, Planning <strong>and</strong> Financing<br />

• The national commitment to exp<strong>and</strong> <strong>PMTCT</strong> within the framework of a national Strategy<br />

for Comprehensive HIV/AIDS prevention <strong>and</strong> care needs to be communicated unequivocally.<br />

• Update broad national protocols <strong>and</strong> guidelines relating to VCT, <strong>PMTCT</strong>, Obstetric<br />

Practices, <strong>and</strong> Infant Feeding, <strong>and</strong> make these widely available.<br />

• Provinces, assisted by National, should develop expansion plans in keeping with available<br />

resources <strong>and</strong> capacity.<br />

• Provinces, with support from National, should address health systems infrastructure <strong>and</strong><br />

human resource capacity, to enable them to fully exp<strong>and</strong> <strong>PMTCT</strong> within the shortest<br />

time frames possible.<br />

• The pilot sites were provided with centrally controlled conditional funding for <strong>PMTCT</strong>.<br />

Conditional grants have been difficult to manage at a Provincial level, <strong>and</strong> potentially<br />

inhibit horizontal <strong>and</strong> integrated service development. Future national financing for<br />

<strong>PMTCT</strong> should be integrated into provincial budgets, <strong>and</strong> managed by Provincial<br />

managers within broad budgetary guidelines for <strong>PMTCT</strong>.<br />

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<strong>Health</strong> Care Infrastructure<br />

• Strengthen training of health workers nationwide to implement <strong>PMTCT</strong> <strong>and</strong> to use<br />

updated protocols. Involve <strong>and</strong> consult local health managers, clinical experts <strong>and</strong><br />

academics in providing these training programmes <strong>and</strong> for ongoing support.<br />

• Lay counsellors are a valuable <strong>and</strong> essential resource for <strong>PMTCT</strong> services. National<br />

policies should be developed for their employment (through NGOs or public services),<br />

training, <strong>and</strong> support. They should be deployed first to places already attempting to<br />

counsel <strong>and</strong> test pregnant women.<br />

• Place nevirapine on the EDL (Schedule 4) <strong>and</strong> make it available to all health facilities.<br />

Nurses must be able to prescribe it (with simple controls). This is essential for passive<br />

case finding.<br />

• Ensure optimal procurement at every level, <strong>and</strong> a reliable supply <strong>and</strong> management<br />

of drugs (nevirapine, multivitamins, co-trimoxazole) <strong>and</strong> test kits. Address problems<br />

of short expiry windows.<br />

• <strong>Health</strong> facilities must be planned or upgraded to provide for private counselling space<br />

(<strong>and</strong> other urgent capital works).<br />

• Integrate a minimum <strong>PMTCT</strong> data set into the routinely collected District <strong>Health</strong><br />

Information System, <strong>and</strong> facilitate monitoring <strong>and</strong> feedback on indicators at every<br />

level.<br />

Coverage <strong>and</strong> Uptake of Testing <strong>and</strong> Nevirapine<br />

• Make VCT universally available at health facilities. A reliable supply of quality test<br />

kits should be guaranteed; quality control <strong>and</strong> training should be supported by the<br />

National <strong>Health</strong> Laboratory Service; follow up technical problems (short expiry windows<br />

on different test components, high false negative rates with a particular kit); set up a<br />

recording system to minimise administrative errors.<br />

• Activate whole catchment areas rather than isolated facilities. The conditions for high<br />

acceptance rates are known: country-wide (not site-bound) promotion, engagement<br />

<strong>and</strong> community mobilisation; ‘good enough’ health infrastructure <strong>and</strong> staffing; innovative<br />

staff training <strong>and</strong> support (in-service, locally adapted, integrated); <strong>and</strong> provision <strong>and</strong><br />

support of trained generic lay counsellors.<br />

• Improve uptake further with VCT in maternity <strong>and</strong> post-natal wards, <strong>and</strong> for mothers<br />

of unbooked or home deliveries<br />

• Increase successful treatment rates by building clients’ confidence in privacy <strong>and</strong><br />

confidentiality, using securely coded records <strong>and</strong> communication, improving ascertainment<br />

of status at maternity units, <strong>and</strong> implementing administrative controls to reduce missed<br />

opportunities for treatment.<br />

• Aim to universally provide nevirapine initially through passive case finding: treat all<br />

women who admit (or claim to be) HIV positive, from whatever testing source. Although<br />

this may seem incomplete, it saves lives <strong>and</strong> has important developmental effects such<br />

as improving the morale of health workers because they can ‘do something’ to help<br />

women with HIV.<br />

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• Explore offering presumptive nevirapine treatment to infants of untested women in<br />

high prevalence areas. This is accepted public health practice when treatment is<br />

important, safe <strong>and</strong> cheap (de-worming, immunisation, food fortification, syphilis<br />

treatment after screening, syndromic treatment for STIs). Contrary to popular assumptions,<br />

presumptive <strong>and</strong> targeted treatment strategies are not mutually exclusive: where<br />

targeting via antenatal VCT is already in place, ‘blind’ treatment could be offered post<br />

delivery to infants of mothers who had missed testing for any reason, to catch potential<br />

missed opportunities.<br />

Follow up<br />

• The follow-up of HIV infected mothers has direct benefit to the mother <strong>and</strong> infant, as<br />

well as great strategic importance. For the first time, large numbers of HIV positive<br />

women will be identified; support groups can be set up; discussion, disclosure, <strong>and</strong><br />

stigma reduction will accelerate in the community. They are also the logical group in<br />

which to commence ARV treatment in the public sector, because they are already<br />

identified <strong>and</strong> improving their health status will impact on infant health.<br />

• Follow up of infants needs greater attention to ensure that proper infant feeding support<br />

is provided, prophylactic treatment is given where indicated, infections are detected<br />

early <strong>and</strong> appropriately managed, <strong>and</strong> that the infants are accessing other essential<br />

routinely provided child health services.<br />

General <strong>Health</strong> <strong>Systems</strong> Improvements<br />

<strong>PMTCT</strong> interventions expose the deficiencies in the health system at several levels. This is not<br />

a reason to delay implementation, as shortcomings identified in the health system should be<br />

addressed in a global fashion. Critical health system issues are:<br />

• Strengthened national, provincial <strong>and</strong> district capacity to plan <strong>and</strong> manage <strong>PMTCT</strong>.<br />

• Adequate staffing <strong>and</strong> facilities for basic PHC services.<br />

• A sustainable solution for the employment of lay counsellors, including legal <strong>and</strong><br />

ethical labour practices, adequate recruiting, training, payments, <strong>and</strong> support, policies<br />

harmonised with those for other community-based health workers, <strong>and</strong> consistent<br />

NGO involvement if this route is to be used.<br />

• Improve drug <strong>and</strong> supplies procurement <strong>and</strong> management systems, including additional<br />

training of management staff at every level.<br />

• A simple information system built primarily for improved patient care <strong>and</strong> local service<br />

evaluation (including information flow between ante-natal, maternity <strong>and</strong> child health<br />

services) to reduce missed opportunities.<br />

• Address covert barriers to access such as official booking days, afternoon closures,<br />

<strong>and</strong> fragmentation of services.<br />

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Strategies to integrate <strong>PMTCT</strong> into the health system<br />

Integrating <strong>PMTCT</strong> into antenatal care<br />

• Encourage all facilities to incorporate counselling <strong>and</strong> voluntary testing into routine<br />

ANC (active case-finding for nevirapine treatment).<br />

• Upgrade antenatal care, including greater accessibility (abolish unofficial ‘days’ for<br />

booking or ANC) <strong>and</strong> aggressive treatment of infections (STIs <strong>and</strong> opportunistic<br />

infections).<br />

• Pregnant women with HIV need to be screened by history <strong>and</strong> clinical examination<br />

for evidence of AIDS-related illnesses. Patients with complications of HIV infection<br />

should be referred from primary care facilities to facilities able to provide appropriate<br />

medical <strong>and</strong> obstetric services (An example of a screening tool for HIV infection can<br />

be found in Appendix 6.7).<br />

• Mothers living with HIV infection must have access to competent adult health care in<br />

the primary health care facilities. Providers in these facilities should receive continuing<br />

education to ensure that they are trained to recognize signs <strong>and</strong> symptoms of advanced<br />

retroviral disease in mothers <strong>and</strong> babies, provide therapy <strong>and</strong> make appropriate<br />

referrals.<br />

• Counselling <strong>and</strong> Testing services need to be provided at all delivery sites <strong>and</strong> before<br />

discharge offered to all women delivering with unknown HIV status. Dedicated<br />

counsellors <strong>and</strong>/or nursing staff should provide counselling.<br />

• Decisions about infant feeding must be made during antenatal care but preferably not<br />

during initial post-test counselling. Ongoing counselling is needed <strong>and</strong> infant feeding<br />

should be discussed during these ongoing sessions. Staff providing antenatal care<br />

should be trained to assist <strong>and</strong> guide mothers in making appropriate decisions about<br />

infant feeding, using st<strong>and</strong>ard criteria.<br />

• All pregnant, HIV-infected women should receive anti-retroviral therapy to prevent<br />

transmission of virus to the baby. The choice of anti-retroviral drugs should be based<br />

on the basic therapy provided by the public health care system (usually nevirapine).<br />

70


Integrating <strong>PMTCT</strong> into a comprehensive package of PHC services<br />

• Family planning should be an integral part of <strong>PMTCT</strong> care. All pregnant women should<br />

make a decision about family planning before delivery. Family planning services must<br />

be available to women after delivery.<br />

• Sterilization procedures should only be offered after adequate counselling of mothers.<br />

Mothers must be aware that the baby could be born HIV-infected <strong>and</strong> die in the first<br />

years of life.<br />

• Linkages must be established between the antenatal care <strong>and</strong> primary care services.<br />

This is particularly important when antenatal care is provided in a facility separate<br />

from other health services.<br />

• All HIV infected pregnant women must be screened for STIs <strong>and</strong> treated syndromically.<br />

• All HIV infected pregnant women must be screened for cervical cancer <strong>and</strong> its precursors.<br />

• Nutrition education <strong>and</strong> counselling should be integrated into antenatal <strong>and</strong> postpartum<br />

care.<br />

• Mothers must be educated about infant care <strong>and</strong> trained to recognize signs of HIV<br />

infection.<br />

• Medications, like co-trimoxazole, commonly used to treat patients with HIV-related<br />

conditions should be available in all health care facilities.<br />

Appropriate vertical support for expansion<br />

The national <strong>and</strong> provincial departments need to review the way they support <strong>PMTCT</strong> to<br />

accelerate expansion, both in breadth (coverage) <strong>and</strong> depth (quality):<br />

• The management, <strong>and</strong> staffing to launch a pilot project is not the same as that needed<br />

to exp<strong>and</strong> <strong>and</strong> maintain an essential part of the PHC package. Move <strong>PMTCT</strong> into<br />

Maternal <strong>and</strong> Child <strong>Health</strong> Directorates at National <strong>and</strong> provincial levels. HIV/AIDS<br />

directorates should concentrate on universal availability of VCT, <strong>and</strong> care <strong>and</strong> support<br />

for people with HIV.<br />

• Formally end the pilot projects (but continue the service) <strong>and</strong> use the experience gained<br />

to support expansion in all provinces.<br />

• The National Steering Committee should be restructured into two key components, a<br />

Technical Advisory Committee consisting largely of technical experts, <strong>and</strong> a Coordinating<br />

Committee, consisting of national <strong>and</strong> provincial managers, which takes<br />

<strong>and</strong> implements decisions. Mixing the two functions has not been an optimal utilisation<br />

of either group’s skills. There should be senior level representation from the national<br />

department of health at both these meetings in order for decisions to be made on key<br />

issues.<br />

• Provinces should establish similar technical <strong>and</strong> co-ordinating structures to support<br />

expansion. These structures should harness available expertise within the provinces,<br />

<strong>and</strong> be supported <strong>and</strong> supplemented with national (including other provinces) expertise<br />

on planning <strong>and</strong> management of <strong>PMTCT</strong>, <strong>and</strong> clinical <strong>and</strong> other technical aspects.<br />

• Issue clear national guidelines on <strong>PMTCT</strong> services within broader st<strong>and</strong>ards for maternal<br />

<strong>and</strong> child care. Allow provinces <strong>and</strong> facilities to work out the details.<br />

• Support training of health professionals at pre-service, short course <strong>and</strong> in-service<br />

levels. Develop a local training infrastructure modelled on IMCI. Encourage a range<br />

of training materials <strong>and</strong> alternative methods. Integrate <strong>PMTCT</strong> <strong>and</strong> infant feeding<br />

training with existing training packages in maternal <strong>and</strong> child health to eliminate<br />

overlaps, gaps <strong>and</strong> inconsistencies.<br />

• Encourage cross-province learning <strong>and</strong> local innovation.<br />

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SUMMARY<br />

We need a fundamental rethink of <strong>PMTCT</strong> implementation if we are to reach the objectives<br />

of reduced child morbidity <strong>and</strong> mortality, care for HIV positive mothers, <strong>and</strong> a better<br />

underst<strong>and</strong>ing <strong>and</strong> response to HIV in general. Universal coverage is essential, but it is<br />

unrealistic to do this with a whole basket of interventions simultaneously.<br />

The pilot projects have shown that it is feasible to implement <strong>PMTCT</strong> in all provinces, in rural<br />

<strong>and</strong> urban settings, <strong>and</strong> at hospital <strong>and</strong> primary care levels with some outst<strong>and</strong>ing success<br />

stories as well as several less successful initiatives. Very real constraints exist in many settings,<br />

<strong>and</strong> difficulties have been experienced at every level in the planning <strong>and</strong> implementation of<br />

the programme.<br />

The challenge is to learn from these, <strong>and</strong> for South Africa to strengthen its implementation of<br />

<strong>PMTCT</strong> based on these experiences. Increased provincial ownership <strong>and</strong> leadership for <strong>PMTCT</strong><br />

is needed, <strong>and</strong> a bottom-up, developmental approach as part of the District <strong>Health</strong> System<br />

should be encouraged. All facilities <strong>and</strong> districts must be enabled to progressively implement<br />

<strong>PMTCT</strong> interventions, <strong>and</strong> <strong>PMTCT</strong> must become a normal part of the routine maternal <strong>and</strong><br />

child health care package.<br />

REFERENCES<br />

1. Preble EA, Piwoz EG. Prevention of mother to child transmission of HIV in Africa: practical<br />

guidance for programs. Washington: Academy for Educational Development, 2001.<br />

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Appendix 6.7<br />

Patient Name: ________________________<br />

Folder Number: _______________________<br />

Date: ________________________________<br />

Screening questions:<br />

SCREENING FOR COMPLICATIONS OF RVD INFECTION<br />

HISTORY<br />

Significant weight loss Yes No<br />

Fever/Chills/Sweats > 4 weeks Yes No<br />

Tongue coating Yes No<br />

Oral ulcers Yes No<br />

Enlarged lymph nodes Yes No<br />

Painful swallowing Yes No<br />

Cough > 2 weeks Yes No<br />

Diarrhoea > 4 weeks Yes No<br />

Genital ulcers Yes No<br />

Rash/Skin Lesions Yes No<br />

Treatment for TB in last year Yes No<br />

Severe Headache Yes No<br />

Confusion, Change in Mental Status Yes No<br />

EXAM<br />

Abnormally Thin Yes No<br />

Unusual skin lesions (not itchy) Yes No<br />

Lymph Nodes > 2cm Yes No<br />

Oral Thrush Yes No<br />

Mouth ulcers or dark spots Yes No<br />

LABORATORY<br />

Hgb < 8.0gm/dl Yes No<br />

Nursing/Midwife Assessment<br />

Routine Care in MOU Referral for Consultation with Doctor<br />

Report by Doctor<br />

Antenatal Care<br />

MOU<br />

Mowbray Maternity/Somerset Hospital<br />

Groote Schuur Hospital<br />

Delivery Care<br />

MOU<br />

Mowbray Maternity/Somerset Hospital<br />

Groote Schuur Hospital<br />

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