Understanding HIV-Related Stigma & Resulting Discrimination in Sub-Saharan Africa

The International Center for Research on Women (ICRW) is leading a USAID-funded research initiative in three African countries and in Vietnam to investigate the causes, manifestations, and consequences of HIV/AIDS-related stigma and subsequent discriminatory acts. The basis for analysis is the community and its institutions - health facilities, the workplace, schools, and religious groups. ICRW and its in-country partners hope to gain an understanding of those factors that perpetuate stigma and how they create barriers to HIV prevention, care, and support efforts. The CHANGE Project/Academy for Educational Development (AED) will use the research findings to develop pilot interventions in Africa that minimise the influence of HIV-related stigma on the use and provision of prevention, care, and support programmes.

This research update is based on preliminary analysis of data collected from the African sites since the data collection began in August 2001. Researchers have collected data from three community sites in three countries (see box on page two), as well as from several supplementary studies. Although analysis of the data is ongoing and even more data is yet to be gathered, several clear themes are already emerging. The publishers share these themes early in the study because of the urgency presented by the epidemic and because they are committed to on-going dissemination of findings as the research progresses rather than only at the end of this three-year project.

The data confirms what the publishers already know: that HIV-related stigma is highly complex, dynamic, and deeply ingrained. More importantly, this data allows us to distill the complexities of stigma into separate, manageable aspects and therefore to better focus on areas of intervention to reduce HIV-related stigma and discrimination. The data shows how the causes of stigma, its intensity, forms, and consequences differ by stage of the disease, the setting (household, health services, neighborhood, places of worship, or workplace), individuals' identities in a particular setting, and over time.

Six key themes are emerging from data analysed todate:

• People are largely unaware that their attitudes and actions are stigmatising
• Language is central to how stigma is expressed
• Knowledge and fear interact in unexpected ways that allow stigma and discrimination to persist
• Sex, morality, shame, and blame are closely related to HIV-related stigma
• Disclosure of positive HIV status is advocated, but acknowledged as difficult and unusual
• Widespread care and support for people living with HIV/AIDS (PLHA) co-exists with stigma and discrimination