2003 Global: Evaluation of United Nations-supported pilot projects for the prevention of mother-to-child transmission of HIV
Effective interventions have dramatically reduced the number of children born with HIV in wealthy and middle-income countries. In the poorest countries, however, matching this success will require overcoming significant financial and operational challenges. To help address these challenges, in 1999, the UN embarked on a program of technical and financial support. In 1999, the UNAIDS Secretariat, UNFPA, UNICEF, and WHO launched the Inter Agency Task Team (IATT) on Prevention of MTCT. The IATT aims to give strong, coordinated leadership and guidance to countries for prevention of MTCT (PMTCT). In the view of the IATT, PMTCT is part of broader strategies to prevent the transmission of HIV and sexually-transmitted diseases, to care for HIV-positive women and their families, and to promote maternal-child health (MCH).
The IATT asked the Population Council to take the lead in evaluating the pilot experience. The evaluation had three main objectives:
- to examine and document progress, experiences, and lessons learned at UN-supported pilot program sites
- to examine the mechanisms of collaboration, coordination, and linkage with bilateral and non-governmental organization (NGO) partners
- to prepare a practical programming framework for scaling up of PMTCT programs
This evaluation report focuses primarily on the quantity and quality of services, factors contributing to program achievements and current program challenges. It was not possible within the scope of this evaluation to collect in-depth information or conduct a systematic examination of program support structures such as capacity building, supplies, and monitoring and evaluation.
The evaluation employed a mix of qualitative and quantitative methodologies, including:
- · a review of progress reports from the country pilots, which included information on program inputs, activities, achievements, challenges, and (for some countries) costs
- interviews (generally by telephone but also face-to-face at the International AIDS Conference 2002 in Barcelona) with key informants such as PMTCT program managers, and technical experts in charge of coordinating PMTCT activities at UNICEF and other donor agencies such as USAID
- rapid assessments in two countries (Rwanda and Zambia), and site visits and face-to-face interviews with program managers in two other countries (Honduras and India) that gathered information from site managers, providers, clients, and community members on PMTCT program inputs, the types of PMTCT services offered and received, the quality of those services, and provider, client, and community reactions to the PMTCT program; and
- a collaborative analysis meeting held in September 2002 with members of the IATT. For a report of the collaborative analysis meeting, see Population Council and UNICEF, “PMTCT Evaluation Collaborative Analysis Meeting, Washington DC, September 9-10, 2002.”
Findings and Conclusions:
PMTCT programs are feasible in low-resource settings, but still face many challenges. In virtually every pilot country, maternal-child health settings are able to effectively integrate PMTCT programs. Currently, 205 sites in a wide range of settings offer PMTCT services in ten of the original eleven pilot countries; Botswana has scaled up its program to the national level. Between January 2000 and the end of June 2002, pilot sites had counseled 385,000 women, given HIV tests to 280,000, and prescribed antiretroviral (ARV) prophylaxis to almost 12,000 women. Yet, PMTCT programs still do not help as many women as they could. On average, thirty percent of women who visit the PMTCT sites for antenatal care (ANC) are not counseled on PMTCT. Of those women who do receive counseling, three out of ten are not tested for HIV. Of those women who test positive for HIV, just under half receive antiretroviral drugs. Although these proportions have increased over time, raising them further remains a critical task for program managers and PMTCT advocates.
The coverage of PMTCT counseling is increasing but staff shortages and service delivery organization continue to affect uptake. Broad averages mask significant differences in the coverage of PMTCT counseling across countries. The percent of women who come to clinics for antenatal care receiving individual HIV pretest counseling ranges from less than 25 percent in Zambia to well over 90 percent in Burundi and Rwanda. An important trend is the tendency for pilot sites to increase the proportion of women they are able to offer pretest counseling over time. This is the case in countries such as India, Kenya and Uganda where, by the end of the evaluation period, antenatal clinics were counseling over 90 percent of clients. Uptake of HIV counseling services is negatively affected by staff shortages and the organization of service delivery, which influence both the supply and demand for HIV counseling.
Including HIV tests as part of routine antenatal care increases the proportion of women who are tested but significant minorities do not collect test results. The percentage of women who accept an HIV test after counseling ranges between 64 and 83 percent. Although counseling quality is one key factor motivating women to take the HIV test, making the test a routine part of antenatal care is also important to encouraging women to be tested. Programs do not routinely report the proportion of women who collect their test results but special studies in Kenya and Zambia suggest that about one-quarter of women do not get their results. Possible reasons for this include results not being ready; women change their minds or were never sure about the benefit of taking the test, and partner opposition.
ARV provision is working well, but coverage remains a challenge. Provision of ARV in the maternal-child health (MCH) setting has been relatively simple and problem-free but the drugs are still not reaching many pregnant women. In nine of eleven pilot countries, only between 40 and 60 percent of women who test positive for HIV at the PMTCT site get ARVs. Moreover, in most countries, one-quarter or fewer of all HIV-positive, pregnant women receiving antenatal services ultimately get a short course of ARVs. Although still too low, this proportion has shown an encouraging increase over time.
HIV-positive women at the pilot sites did not receive a complete course of ARVs for a variety of reasons, including: not having reached yet thirty-four or thirty-six weeks gestation when zidovudine is initiated and not coming back after; not taking the full dosage of their ARV; partner opposition; concern about taking drugs during pregnancy; they deliver at home or another facility and thus miss out on the intrapartum doses; or they reach the health facility when in active labor and thus too late for intrapartum doses. To increase use of ARVs, programs are switching to, or relying more heavily on, Nevirapine, including giving women Nevirapine to take home with them and ingest at the onset of labor.
The benefits of PMTCT go beyond the ARVS provided. PMTCT programs have greatly increased the amount of health education on HIV/AIDS and PMTCT and, specifically, information on how to prevent transmission provided to women, and program evaluations show knowledge is increasing. PMTCT services are providing information to clients, which is tailored to their concerns and context about their own risk, the health of their partner and children, and their relationship with their partner. Women are empowered when they learn they are not helpless to respond to HIV.
A PMTCT Health Information System is a critical management tool. Creating and maintaining a health information system that collects information on the number of women utilizing various PMTCT services is vitally important to monitor and evaluate the volume of services provided, program coverage, how successful the program is at reaching women in need, and where bottlenecks or breakdowns within services occur. This information is a critical management tool for planning, budgeting, monitoring and evaluating PMTCT programs.
Factors Contributing to Program Achievements:
Motivated health workers are the backbone of PMTCT. PMTCT pilot programs have now trained nearly 3,300 health workers on topics that include the minimum package for PMTCT, general counseling skills, infant feeding counseling, and laboratory tests. The introduction of PMTCT services has provided extra motivation and empowered health providers by — for the first time for many — giving them tools to help clients and their babies fight HIV. Nonetheless, a shortage of staff in general, and trained staff in particular, is still among the most important constraints on the program.
Levels of quality of care in PMTCT programs are encouraging. PMTCT services are tailoring information to respond to client concerns about their own risk, the health of their partner and children, and their relationship with their partner. The response of clients and community members to PMTCT services has been widely positive.
PMTCT programs contribute to stigma reduction. While most PMTCT programs report experiences with stigma in health care settings and in communities, generally clients and program managers do not highlight stigma and discrimination as a major program challenge. Similarly, the evaluation found no evidence from program staff that the introduction of PMTCT programs in the MCH setting has discouraged the use of traditional antenatal care. To the contrary, PMTCT programs have helped women safely disclose their HIV-testing experience and status to their partner's family and have contributed to stigma reduction in the community by fostering discussions and normalizing HIV counseling, testing, and care.
Communication activities to mobilize communities lag behind clinical services. An integrated PMTCT communication strategy provides a strong base to address key PMTCT-related issues. However, the additional management and resource burden of developing and implementing a communication strategy has delayed or limited the implementation of such strategies in many sites. Programs have generally concentrated first on communications at the clinics to provide materials for providers, clients, and their families. Partly, this is because activities in the community are more challenging to sustain.
Attention to engaging male partners is insufficient. In most settings, male involvement and support is critical to improving women’s uptake of core PMTCT services as well as for primary prevention of HIV and avoiding unintended pregnancy. Nonetheless, pilot programs have done relatively little to involve men and many program managers see encouraging male involvement as one of their challenges.
Infant feeding remains the most challenging component of PMTCT programs. Global guidance for HIV and infant feeding counseling exists, but each country needs to develop or adapt policy guidelines based on local conditions. Programs use a variety of models for infant feeding counseling. Most use nurse-midwives, some use specialized counselors, and one program, in Rwanda, has separate nutrition centers. Each approach has its advantages and disadvantages. Despite training, staff knowledge and counseling abilities remain weak. Counselors frequently steer a woman towards an infant feeding method based solely on her HIV status rather than a comprehensive assessment of her social and economic resources for implementing various feeding options. Moreover, very few programs provide ongoing support for women to carry out their infant feeding choice once their baby is born.
Programs recognize the importance of care and support but need more comprehensive services. PMTCT pilot programs vary widely in the development of care and support services, with Botswana leading with the most advanced care and support network. Efforts in other countries, however, are patchy at best. PMTCT programs do little in the way of proactive follow-up care for infants.
PMTCT programs need to strengthen related antenatal, family planning, and primary prevention services. While PMTCT programs have generally succeeded in introducing core services such as voluntary counseling and testing (VCT) and ARV provision into the MCH care setting, they have not made much headway in addressing related needs, including primary prevention of HIV in women, prevention of unintended pregnancy in HIV-infected women, and improved antenatal and obstetric care. Attention to prevention and treatment of sexually transmitted infections, maternal nutrition, and basic supplies for antenatal care remain inadequate.
Government support and high-level coordination is key as programs move from piloting to scaling up. The complex and multisectoral nature of PMTCT programs demands strong leadership and good coordination to ensure the success of both pilot and scaled-up programs. A number of countries have taken steps in the right direction through organizational changes, establishment of national coordinating bodies, and assignment of full-time staff to manage national programs.
Human resources will be critical in expanding coverage and scaling up. Scaling up will require resolving a number of human resource problems, including staff shortages, the need for large-scale training and ongoing worker support, and inadequate remuneration.
Existing ANC/MCH supply systems should be strengthened to effectively integrate and scale up PMTCT services. Scaling up access to PMTCT services requires using the existing ANC/MCH procurement and supply systems for PMTCT supplies. Strengthening this supply chain should be a priority activity or PMTCT services will be vulnerable to the same supply problems that beleaguer many MCH programs.
The Special Case of Low-Prevalence Countries:
Programs in low-prevalence settings report similar experiences as high prevalence settings but also face unique opportunities and challenges. Two of the pilots took place in relatively low prevalence settings in Honduras and India to learn how the introduction and scaling up of programs might differ in such a setting. The experiences in the lower prevalence sites have much in common with the higher prevalence sites in Africa, though also significant differences. One unique factor contributing to success in India was the addition of qualified counselors, which ensured a high quality of counseling services overall. India also differs from most sites in that resident doctors and nurses who rotate between departments with relative frequency and may not be up-to-date with the PMTCT intervention, provide a significant proportion of PMTCT services. An operational difficulty identified in the AZT and NVP feasibility studies in India has been the coverage for HIV-positive women who choose to deliver at home, as is the case when they move away to their parental homes for the delivery.
Due to its low prevalence and small size of its target population, the PMTCT program in Honduras has a number of characteristics making it different from both those in high-prevalence African countries and India. Because almost all clients are HIV-negative, VCT is less emotionally burdensome for both clients and providers, and the small number of women testing HIV-positive means that the program can spend more resources to provide individualized follow-up support. On the other hand, additional advocacy for PMTCT is required because HIV/AIDS is a lower priority health issue for governments in low-prevalence countries, and international donors have little interest in supporting programs compared to some high-prevalence settings.
To increase coverage and improve infant feeding counseling:
Experience at the pilot sites as well as from PMTCT programs elsewhere suggests several actions that may help keep women in the program to receive the full benefit of HIV and infant feeding counseling, HIV testing, and ARV prophylaxis: supplementing clinic staff with lay counselors; introducing rapid HIV tests so women can receive same-day counseling, HIV testing, and test results; improving the quality of HIV and infant feeding counseling by providing job aids and active supervision; offering support to PMTCT providers including material support and peer psychosocial support; partnering with community groups to offer community education and outreach; and expanding the vision of PMTCT to encompass an active role for fathers and male partners.
To strengthen postnatal support and follow up of HIV-infected women and their infants to assist them with infant feeding, getting care for themselves and their families, and to evaluate the program:
PMTCT programs should establish national infant feeding guidelines that include recommendations for HIV-infected women, based on an assessment of local feasibility, acceptability, affordability, safety and sustainability of various feeding options. Also needed are postnatal follow-up protocols, including outreach and support groups to help mothers safely apply their infant feeding decision, encourage good maternal nutrition, and address infant feeding after six months. Pilot sites have forged many successful partnerships between the PMTCT program and NGO care and support groups, and scaled-up programs should replicate similar partnerships at all sites. New opportunities for addressing postnatal care for HIV-infected women and enhanced referral links between PMTCT programs and HIV care are currently being devised as part of the development of MTCT-Plus programs. New measurement tools and systems should be developed through field trials, and expanded programs will require monitoring and evaluation staff.
To scale up:
PMTCT programs must not only expand to new sites but enlarge the scope of activities within existing sites to reach more women and to provide a comprehensive package of HIV prevention and care. This requires human resources and expertise, coordination and collaboration between partners, a well-functioning supply system and resource mobilization. Strong leadership and good coordination of the many institutions and individuals involved is critical to successful scaling up.
The pilot experience has shown that introducing PMTCT programs into antenatal care in a wide variety of settings is feasible and acceptable to a significant proportion of antenatal care clients who have a demand for HIV information, counseling, and testing. In many aspects, however, programs can be strengthened. As they go to scale, PMTCT programs have much to learn from the pilot phase, during which they successfully reached hundreds of thousands of clients. Hopefully, they can translate this knowledge into better services for many more women, children, and families.
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