Horizons | Research Summary | Positive, Engaged, Involved: PLHA Participation in Community-based Organizations

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RESEARCH SUMMARY

August 1999

Positive, Engaged, Involved:
PLHA Participation in Community-based Organizations

Improving Services to Women Living with
HIV/AIDS

The Horizons study also looked closely at the issue of gender in PLHA involvement in CBOs. In individual interviews, several questions on the needs and experiences of women—both generally and as members or beneficiaries of CBOs—are included. Focus groups were also organized with women from ALAVI and REVS+, the two CBOs that have self-identified HIV-positive women among their members.

A poster presented by REVS+ during the results analysis workshop.

Many of the responses highlighted the difficulties and inequality that Burkinabe women face, whatever their serostatus, and how HIV infection directly aggravates these problems.

“They give birth, they look after the men when they are sick, they are the ones who inherit HIV when the man is no longer around … and their in-laws come and take everything, leaving them with nothing but their HIV and the children,” a young man who is a member of REVS+ said.

The study also investigated the specific needs of seropositive women, including:

Better information on the risks to both mother and child of becoming pregnant, which is especially important to women in a culture where motherhood gives women what little social status they have.
Better pregnancy care, both for the mother’s health and to reduce the risk of mother-to-child transmission, as well as hygienic improvements in maternity facilities.
Improved communication with health professionals, whom women fear will judge them negatively if they ask for advice about HIV infection and pregnancy.
Solutions to ease their economic dependence on men, which can limit access to care if a husband or partner, father, brother, or other male family member refuses to pay for medicines or other necessities. In many cases, HIV-positive couples reserve finances for the male partner’s care, ignoring the needs of the female partner. The financial inequities continue even after the husband or male partner dies, because women are often abandoned by their in-laws, who may take away what little is left of their dead relative’s assets.

CBO responses to the needs of women living with HIV/AIDS show room for improvement, the study revealed. Only one CBO among those studied, ALAVI, addresses the information needs of HIV-positive women who are or want to become pregnant. Prevention strategies directed at women are virtually nonexistent among the organizations. Most of the groups attempt to address women’s economic problems. Women receive material support from the majority of the CBOs studied, but most groups lack experience in creating income-generating opportunities for women. One CBO, Association African Solidarité (AAS), pays 80 percent of the cost of prescriptions for women and 50 percent for men.

Researchers did identify a direct link between the role women play in the CBOs and an awareness of the difficulties facing HIV-positive women: the more women involved, the better these concerns were understood and addressed within the CBO’s planning and programming. The CBOs themselves have identified and in some cases already implemented several strategies to improve their response to women’s needs.

AAS has created a women’s committee that will propose new approaches to better meet the needs of both women service recipients and women within the organization. REVS+ has set up a support group for women. Overall, the CBOs agree that retooling organizational structure is necessary and desirable to allow such support groups to function, although they are concerned about inadvertently dividing the group by gender and seek ways to involve both women and men in addressing the prevention, care, and support needs of women.

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