MARCH 2009 — Analysis of the largest survey of people living with HIV (PLHIV) and their children in Namibia was completed last month. The HIV and AIDS Treatment Literacy Follow-up Survey was conducted over two months in late 2008 through the coordinated efforts of five partners and four donors, and yielded findings that were shared at a dissemination workshop in Windhoek early this month.
"This survey is groundbreaking because it strongly suggests that participation in a support group makes a huge difference in both the knowledge PLHIV have about the disease and, more importantly, how they manage it," said report contributor Lucy Steinitz, FHI's technical advisor for families and children. Steinitz added that "These support groups may well constitute a 'silver bullet' in helping to stop the spread of HIV in the general population."
Members of PLHIV support groups from seven of Namibia's 13 regions, including 720 HIV-positive adults and 83 children of PLHIV, participated in the survey, sharing views on topics ranging from condoms and antiretroviral drugs to healthy living and stigma and discrimination. Fifty healthcare workers responsible for treating PLHIV were also surveyed.
The children's opinions were elicited through drama, drawing, and discussion in five focus groups led jointly by Family Health International and its local partner Positive Vibes. "The study demonstrates the importance of children's participation in research, and that the children of PLHIV want and need support, as well," explained Marika Matengu, FHI's technical advisor for the FABRIC program in Namibia.
Key findings of the study
Prevention
- Most adults interviewed not only understand the importance of using a condom every time they have sex, but they also insist on using them.
Antiretroviral therapy (ART)
- More respondents experienced improved health than those who did not. Few of the patients on ART reported severe side effects. Patients enjoy regular access to their drugs, although some must travel 25 km or more for refills.
- The most effective means of conveying information on ART remains radio. Most prefer to receive information on HIV/AIDS in the language they use at home. Although English is the official language of Namibia, only two respondents said it was their home language.
- Healthcare workers consider poverty to be the main cause of patient dropout of ART. To be effective, ART requires a healthy diet. Some patients say that ART also makes them hungrier, and they can’t afford the food.
Supporting positive living
- Support groups for adults offer important emotional and social support and information on living with HIV/AIDS. The groups appear to be very effective in influencing positive living as well as behavior change.
Stigma and discrimination
- The perception that healthcare workers discriminate against PLHIV was not borne out by the study. Discrimination appears to be limited to individual cases rather than systemic.
- Of all HIV-positive patients, men who have sex with men, or MSM, are the most likely to experience discrimination in hospitals, clinics, or their communities.
- Most adults surveyed suffer from poverty, and roughly equal numbers of men and women are unemployed. Most who have jobs earn N$500 or less per month (about US$50).
Children
- The children of PLHA adopt adult roles and responsibilities, leaving them with little time for homework or play, both of which are important to their development. They know a lot about HIV treatment, often serving as treatment supporters to a sick family member, but they know much less about HIV prevention and positive living.
- Despite the hardships, most children interviewed have big dreams, usually to become doctors or teachers. However, they recognize that their schoolwork is suffering and seek assistance. They also ask for support groups like those parents have and for more community support in the form of visits from neighbors, home-based care, donations of food, etc. to enable them to cope with their domestic burdens.
Other health risks for PLHA
- TB continues to threaten the health of PLHIV throughout Namibia
- The risk of exposure to malaria is the greatest in Katima Mulilo in the northeast.
This survey builds on similar but smaller studies. Partners included Family Health International's FABRIC program, NawaLife Trust, Positive Vibes, the Social Marketing Association, and The Rainbow Project. Many donors made the study possible, including the Danish International Development Agency (DANIDA), The UK's Department for International Development (DFID), the Schoer Foundation of Holland, and the US President's Emergency Plan for AIDS Relief (PEPFAR) through the US Agency for International Development (USAID).
PHOTO: Participants of the Children's Voices pilot project (positivevibes.org).
