Mother-to-child transmission is the primary route of HIV infection in children. UNAIDS estimates that in 2001, about 800,000 children under age 15 became newly infected with HIV/AIDS. Clinical trials in several countries have shown that mother-to-child transmission of HIV can be greatly reduced by administering a short, affordable course of antiretroviral therapy to pregnant women. The use of breastmilk substitutes further protects infants. Unfortunately, community attitudes can often dissuade women living with HIV/AIDS from using these methods. When programs solicit the opinions of community members and seek to reduce the stigma of HIV/AIDS by educating citizens, however, women’s access to and willingness to seek help can be greatly enhanced.
Beginning in 1999, researchers at the Population Council and the International Center for Research on Women (ICRW) initiated several activities to identify effective means of improving community involvement in efforts to prevent mother-to-child transmission. With support from Glaxo Wellcome’s Positive Action Program and UNAIDS, the investigators reviewed the literature on community involvement and assessed community views on preventing mother-to-child transmission in Botswana and Zambia.
Why involve the community?
UNAIDS defines a community as “a group of people with something in common, whether they live together, come from the same area, [share the same] gender, or ethnic background....” Community involvement can take many forms: community members can participate in focus group discussions or interviews; they can shape or support interventions; they can deliver services; or they can be advocates. Community participation is particularly relevant when it comes to marginalized and underprivileged groups, who often have no voice in matters that affect their lives.
In many developing countries, women are one of these marginalized groups. Pregnant women must decide whether to seek antenatal care and whether to be tested for HIV infection. If they test positive, they must decide whether to use antiretroviral drugs and, later, whether they will breastfeed their child or use infant formula or other replacement foods. (The decision to use breastmilk substitutes is further complicated because often such substitutes and potable water with which to prepare them are unavailable.) Some of these behaviors—taking antiretroviral drugs or cup feeding, for example—may inadvertently reveal a woman’s HIV status, which could lead to discrimination and other negative consequences.
The ICRW researchers found that the benefits of techniques to reduce mother-to-child transmission of HIV may be overshadowed by personal values and beliefs and community norms regarding HIV. In focus group discussions and interviews, respondents in Bontleng, Botswana and Keemba, Zambia said that they doubted the efficacy of antiretroviral drugs. These reservations arose from a lack of understanding of avenues of transmission during and following pregnancy. Respondents also felt that if people living with HIV/AIDS disclosed their status they would face stigma, discrimination, and isolation.
“When involved and appropriately educated, community groups can offer specific support for efforts to prevent mother-to-child transmission of HIV,” stated the Population Council and ICRW investigators. For instance, community groups can help spread the message that while breastfeeding remains important, a decision by HIV-positive women not to breastfeed deserves support rather than condemnation. Peer educators who have firsthand knowledge of pregnancy and HIV can educate women about their options and organize community and support groups.
One program that develops community support to combat HIV transmission, Stepping Stones (in Uganda), uses participatory techniques to promote open discussion of HIV/AIDS. Stepping Stones successfully used these methods to educate and mobilize community members on ways to minimize the risk of becoming infected with HIV.
The researchers offered a number of guidelines for program managers to increase community involvement in the prevention of mother-to-child transmission of HIV. Among their guidelines was advice to:
First and foremost, explore community norms and values in advance of implementing programs. Planners should use surveys, focus group discussions, and interviews with community and religious leaders and other citizens to assess the knowledge, attitudes, and perceptions about HIV/AIDS and related topics; and
Provide significant others with information, education, services, and support. The research showed that partners, family, and community members strongly influence women's choices about voluntary counseling and testing and infant feeding. Care should be taken, however, to protect women's privacy. Partners and family members should not be involved without a woman's consent.
While community involvement is a necessary component of all interventions and programs, the investigators emphasize that community-based groups can be expected to shoulder only part of the burden for program provision. Governments and nongovernmental organizations need to provide help and support. Moreover, there are certain services that only the government can and should provide.
Sources
Leonard, Ann, Purnima Mane, and Naomi Rutenberg. 2001. “Evidence for the importance of community involvement: Implications for initiatives to prevent mother-to-child transmission of HIV,” in Community Involvement in Initiatives to Prevent Mother-to-Child Transmission of HIV: A Collaborative Project. New York: Population Council. (PDF)
Rutenberg, Naomi, Mary Lyn Field-Nguer, and Laura Nyblade. 2001. “Community involvement in the prevention of mother-to-child transmission of HIV: Insights and recommendations,” in Community Involvement in Initiatives to Prevent Mother-to-Child Transmission of HIV: A Collaborative Project. New York: Population Council. (PDF)
Outside funding
Glaxo Wellcome, UNAIDS, and the United States Agency for International Development
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