June 2007

From Mother to Mother
A peer mentor program to prevent mother-to-child transmission of HIV in South Africa offers much needed support

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Nokukhanya is filled with excitement and hope as she discovers she is pregnant for the first time. Determined to give her baby the best care she can, she visits the local antenatal clinic in KwaZulu-Natal, South Africa. But there she receives the crushing news: she is HIV-positive and could potentially pass the infection to her unborn child.

As the counselor explains steps she can take to protect her baby—things like taking medicine while she is pregnant and giving them to her newborn—Nokukhanya’s head spins and her thoughts race. All she can focus on is how much she wants to be around to watch her baby grow, how desperately she wants her baby to be healthy, and how frightened she is of the diagnosis, of telling her husband, and of her neighbors finding out about her status.

To help the thousands of mothers like Nokukhanya, the mothers2mothers (m2m) program was created in South Africa in 2001. The idea behind it was simple: to provide much needed psychosocial support for women who have learned they are HIV-positive so they can both accept their HIV status and adhere to medical recommendations for the prevention of mother-to-child transmission (PMTCT).

In South Africa most PMTCT services are offered through government-supported health facilities that provide rapid HIV testing at the first prenatal care visit and Nevirapine for women in labor and for infants after delivery. The facilities are now scaling up to provide dual treatment with AZT and Nevirapine for pregnant women and infant testing for HIV at six weeks of age using HIV DNA PCR tests. However, despite the availability of services, the reality is that for many women, adhering to the recommendations is hindered by fear of stigma, lack of information, and little time for overworked health providers to offer counseling and support services. In addition, there is weak follow-up in the postpartum period, which means many women and children do not get all the services they need.

While anecdotal information suggested that m2m fills an important gap in service provision, the program had not been formally evaluated until now. To determine whether it improved the psychosocial well-being and behaviors of women living with HIV, and increased the uptake of PMTCT services, the Horizons Program, in collaboration with Health Systems Trust, conducted an evaluation of the program in 2006.

The mothers2mothers Program

Based on the concept that peer support is an effective model for education and social empowerment, and that mothers themselves are the best vehicles to provide support to other mothers, m2m trains and employs new mothers, who have themselves benefited from PMTCT services. These “mentor mothers” participate in two weeks of training that covers basic medical knowledge about HIV infection and antiretroviral therapy (ART), behaviors that help prevent mother-to-child transmission, safer feeding options for infants, strategies for helping women disclose their status and negotiate safer sexual practices, and nutritional guidelines for women living with HIV.

“The program recognizes that mothers are a community’s single greatest resource,” said Dr. Mitchell Besser, founder of m2m. “Mentor mothers, who have gone through PMTCT services themselves, are recruited locally and paid a stipend for the work they do, making them professional members of the health care team.”

The m2m program exists in partnership with provincial, district, and municipal initiatives to support the delivery of antenatal care (ANC), HIV testing and counseling, and treatment services in order to prevent mother-to-child transmission of HIV. Program activities include health talks conducted in waiting rooms to introduce new mothers to m2m, individual and group education, and regular support group meetings that include nutritious lunches. Mentor mothers also conduct community outreach to assist women at home with disclosure, support women in their choice of infant feeding method, promote safer sex and family planning, and encourage mothers to return for wellness HIV care or treatment and to bring their baby back to the clinic for HIV testing and care.

The Evaluation

“The program recognizes that mothers are a community’s single greatest resource.”

The study was conducted in KwaZulu-Natal, South Africa’s most populous province and the one with the highest HIV prevalence among pregnant women (approximately 39 percent). Prior to the introduction of m2m in three health facilities in the province, the research team used a structured survey to collect baseline data from a cross-section of 361 HIV-positive pregnant (6–9 months) and postpartum women (12 weeks or less), ages 18–49, accessing services from September to November 2005. The researchers collected data from a second cross-sectional sample of 695 HIV-positive pregnant and postpartum women after the program had been in place for approximately one year (August–October 2006).

To determine the effects of the program, the investigators compared data from the baseline and follow-up surveys and between participants and non-participants in the m2m program at follow-up. The outcomes included PMTCT knowledge, disclosure of HIV status, receipt and ingestion of Nevirapine, infant feeding intentions and practice, family planning intentions and practice, referral and follow-up for care, and psychosocial well-being.

Exposure to the Program

The program achieved substantial coverage at the three evaluation sites, with high rates of program participation by both pregnant and postpartum women. Two-thirds of the HIV-positive women interviewed at follow-up (n = 695) reported that they had heard about a program called “mothers2mothers.” Among the 345 HIV-positive pregnant women who were interviewed at follow-up, 6 out of 10 women reported that a mentor mother had talked to them. Of the 350 HIV-positive postpartum women, over half reported that a mentor mother spoke to them during their most recent pregnancy, and 39 percent reported that this occurred after delivery. Among the postpartum women who established contact with a mentor mother, the median number of contacts was four during pregnancy and two after delivery.

Encouraging adherence to PMTCT guidelines has the potential to avert new pediatric HIV infections. Photo credit: Courtesy of m2m

For the purpose of this study, respondents were considered program participants if they spoke to a mentor mother two or more times. Using that definition, 42 percent of the 345 pregnant women and 49 percent of the 350 postpartum women interviewed were considered program participants at follow-up. For clarity in presenting the study results and for understanding the potential impact of the program, data from women who had only one contact (16 percent of pregnant women and 9 percent of postpartum women) were removed from the analyses.

Are Mentor Mothers Making a Difference?

It is an explicit goal of m2m to encourage HIV-positive women to disclose to at least one person, as this facilitates adherence to PMTCT recommendations. For this reason, the women interviewed were asked whether or not they had disclosed their status to anyone, as well as when and how many people they had told.

The evaluation found that postpartum women who had two or more contacts with m2m were significantly more likely to have disclosed to someone than non-participants (97 percent vs. 85 percent; p < .01). Among those who disclosed, program participants were more likely to have disclosed prior to delivery than non-participants (91 percent vs. 81 percent; p < .05). Program participants also reported disclosure to more people than non-participants (median of 3 vs. 2).

The study also found important changes among postpartum women in the area of Nevirapine use. Postpartum program participants were significantly more likely to have received Nevirapine to prevent mother-to-child transmission of HIV during their pregnancy in comparison to non-participants (95 percent vs. 86 percent, p < .05). In addition, the women who had two or more contacts with mentor mothers were significantly more likely to have ingested the drug and to have received the infant dose of Nevirapine within three days of delivery.

In accordance with WHO recommendations, m2m does not advocate either breast or formula feeding but rather educates women about the importance of selecting an exclusive feeding method, ideally during pregnancy, and then supports women’s decisions and helps them maintain their choice post delivery. The evaluation found that postpartum program participants were more likely to report practicing an exclusive method of feeding (89 percent vs. 76 percent, p < .01), with most feeding their child infant formula without giving breastmilk.

Postpartum program participants were significantly more likely to have received Nevirapine during their pregnancy.

This result of greater adherence to recommended feeding practices is supported by postpartum program participants being more likely than non-participants to have decided on a feeding method before delivery (87 percent vs. 71 percent, p < .01). Among those who decided on a feeding method before delivery, 9 out of 10 postpartum women (both program participants and non-participants) indicated that they were feeding their infant the method they had previously selected, suggesting that in this study population almost all women are able to execute their plans if they made a decision prior to delivery.

CD4 count is a key marker for determining eligibility for ARV treatment and having the test done is an important first step in accessing HIV care. Study results indicate that significantly more postpartum program participants underwent CD4 testing during their last pregnancy than non-participants (79 percent vs. 57 percent, p < .01). Logistic regression analysis further supported this relationship, as postpartum program participants were 3.3 times more likely to have undergone CD4 testing during their last pregnancy compared to non-participants (adjusted odds ratio: 3.3; 95 percent CI 1.9–5.9; p < .01).

Finally, m2m program participants reported a significantly greater sense of well-being than their counterparts on several measures. More than 9 out of 10 pregnant program participants felt that they could do things to help themselves, cope with caring for their infants, and live positively. Fewer postpartum program participants than non-participants reported having negative feelings such as feeling alone in the world, overwhelmed by problems, and hopeless about the future.

In the words of a mentor mother “As a mentor mother I encourage women to take care of themselves and tell them that when you have this disease it’s not the end of the world. I also give them support on different kinds of problems and try and come out with solutions to the problems that they have. “When I advise a person who has just tested and found out that she is positive, the first thing that I tell that person is that finding out that you are positive does not mean that it is written on your body—I am also positive but you cannot tell. What you need to do is cry, and I know that it is difficult in the beginning to deal with finding out about your status. The only thing that you need to do is to accept it. I encourage that person to come to the support group all the times so that she can learn from other members until she is used to it. “When I found out I was positive [and there was no m2m program] I thought that it was the end of the world and I was going to die and leave my child behind. I thought that maybe it had been a long time since I had this disease. I blamed my partner for infecting me. “The program has helped me because I know about my status and about the CD4 count. They also advised me about the kinds of food that I have to eat. I now visit the doctor regularly. I am able to help other people and I am no longer scared. I share the knowledge that I get from the mothers2mothers program with my family so that they know what is happening and how to help me when I am sick. “I am now able to support my child and my family and I can take care of myself—as you can see I look beautiful. By working in the mothers program, I can say that I have received skills for the food of the soul, to be able to advise people whenever they have a problem.” 25-year-old mentor mother with one child

Conclusions

Overall, the evaluation findings indicate that m2m plays a positive role in complementing PMTCT services by providing psychosocial support and a continuum of care for HIV-positive women and their infants. The study, which was conducted in a real world setting, provides valuable quantitative data which suggest that m2m helps women utilize PMTCT services and follow PMTCT recommendations. But limitations of the study are its lack of randomized samples and biological markers, such as PCR testing. Thus the findings from this evaluation are proxy measures for reducing vertical transmission and further research that directly assesses whether participation in m2m contributes to lower HIV transmission rates among infants born to HIV-positive mothers will be important.

This evaluation found that postpartum women who participated in the program acted to a greater extent on PMTCT recommendations than pregnant women; this may be due to the fact that they had more contacts with m2m staff than pregnant women, and also had more time to come to terms with living with HIV. “The findings among postpartum women are encouraging and suggest that there is a dose effect, and that more contacts and time with the program may lead to greater impact for more women,” explained Carolyn Baek of Horizons/Population Council, principal investigator for the study.

Results from the m2m evaluation are being widely disseminated in the United States; South Africa; and among researchers, donors, and stakeholders. A final report is available at www.popcouncil.org/m2mFinalReport. More information about the m2m program can be found at www.m2m.org.

This article was written by Hena Khan in conjunction with the study team which includes Carolyn Baek of Horizons/Population Council; Vuyiswa Mathambo, Sibongile Mkhize, and Irwin Friedman of Health Systems Trust; and Louis Apicella and Naomi Rutenberg of Horizons/Population Council.

For more information on this study, contact Carolyn Baek at cbaek@popcouncil.org.

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© 2007 The Population Council, Inc.

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See Also

• FRONTIERS

• Population Council Infants and Children

• Population Council Journals and Newsletters

• Population Council Prevention

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This page updated 6 July 2007

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