Abstract

Stigma Research

Julie Pulerwitz, Sc.D.

The Horizons project is a global HIV/AIDS operations research project focused on testing innovative strategies to prevent HIV and mitigate the impact of the AIDS epidemic. Approximately 60 studies are currently being conducted in Africa, Asia, and Latin America. The project is funded by USAID and led by the Population Council, in partnership with PATH, the International HIV/AIDS Alliance, ICRW, Tulane University and the University of Alabama.

Despite the scope and severity of the problem of HIV-related stigma in the developing world, there is little documentation on the causes and manifestations of stigma or consensus on how to mitigate the problem. Horizons has developed a broad research portfolio to better understand the dynamics of stigmatization and discrimination and identify effective interventions that reduce stigma.

The exploratory phase of a workplace intervention study in South Africa found that the main manifestation of HIV-related stigma appears to be the social isolation and ridicule of those thought to be positive. Participants reported a greater fear of stigma in the community as opposed to the work place. These findings are currently being used to develop interventions to reduce HIV-related stigma for workers and their families, including linking services in the community and workplace. Indicators for stigma were also identified, and are being used to develop a multi-dimensional measure appropriate for the local context.

Children both perpetuate and experience AIDS-related stigma as well. Respondents in a study in Uganda indicated that one of the most common forms of stigma and discrimination experienced by children affected by AIDS was to be teased and socially isolated by peers. This suggests that children adopt larger societal attitudes towards AIDS at an early stage and should be included in efforts to reduce AIDS-related stigma. This study also demonstrates that an intervention does not have to address stigma explicitly to succeed in reducing stigma. Baseline data indicated that one of the obstacles expressed by HIV positive parents in appointing guardians for their children was ‘fear of disclosure.’ Some of the ‘side-effects’ of succession planning, which supports AIDS-affected families in planning a better future in part through open communication about the virus, include a higher rate of disclosure among HIV-positive parents and more positive attitudes on the part of the community towards affected families.

Horizons’ study of the involvement of people living with HIV/AIDS (PLHA) in community-based organizations (CBOs) in Burkina Faso, India, Ecuador and Zambia shows that such involvement can help PLHA reduce their fear of stigmatization. The study also found that because HIV/AIDS is closely associated with illness, death, and multiple sexual partners, associations which can be stigmatizing unto themselves, programs should address various myths about the disease, by (1) Including PLHA who are asymptomatic in prevention efforts, and (2) Showing that it is possible to live well with HIV/AIDS through better nutrition, exercise, and treatment of opportunistic infections.

Horizons has also conducted two reviews of community-based interventions in Southeast Asia and of 21 published or reported intervention studies that explicitly attempt to decrease AIDS-stigma. The first review revealed that while reducing stigma is rarely the only focus of an intervention, it is nonetheless an important part of many programs. Key informant interviews with project staff show that negative attitudes decline as a ‘side effect’ of other project activities. Efforts to reduce community-level discrimination can be integrated into any HIV/AIDS program by facilitating PLHA participation, addressing the whole prevention-to-care continuum, and integrating many segments of society into program activities. The second review found that while the interventions as a whole reduced stigma when compared to control or comparison groups, those studies that tested several different modes of the same strategy (e.g., different approaches to providing information or coping skill acquisition) generally found no differences between intervention groups.