The International Center for Research on Women (ICRW), in partnership with organizations in Ethiopia, Tanzania, and Zambia, led a study of HIV and AIDS-related stigma and discrimination in these three countries. This project, conducted from April 2001 to September 2003, unraveled the complexities around stigma by investigating the causes, manifestations and consequences of HIV and AIDS-related stigma and discrimination in sub-Saharan Africa. It then uses this analysis to suggest program interventions. Structured text analysis of 730 qualitative transcripts (650 interviews and 80 focus group discussions) and quantitative analysis of 400 survey respondents from rural and urban areas in these countries revealed the following main insights about the causes, context, experience and consequences of stigma: The main causes of stigma relate to incomplete knowledge, fears of death and disease, sexual norms and a lack of recognition of stigma. Insufficient and inaccurate knowledge combines with fears of death and disease to perpetuate beliefs in casual transmission and, thereby, avoidance of those with HIV. The knowledge that HIV can be transmitted sexually combines with an association of HIV with socially “improper” sex, such that people with HIV are stigmatized for their perceived immoral behavior. Finally, people often do not recognize that their words or actions are stigmatizing. Socio-economic status, age and gender all influence the experience of stigma. The poor are blamed less for their infection than the rich, yet they face greater stigma because they have fewer resources to hide an HIV-positive status. Youth are blamed in all three countries for spreading HIV through what is perceived as their highly risky sexual behavior. While both men and women are stigmatized for breaking sexual norms, gender-based power results in women being blamed more easily. At the same time, the consequences of HIV infection, disclosure, stigma and the burden of care are higher for women than for men. People living with HIV and AIDS face physical and social isolation from family, friends, and community; gossip, name-calling and voyeurism; and a loss of rights, decision-making power and access to resources and livelihoods. People with HIV internalize these experiences and consequently feel guilty, ashamed and inferior. They may, as a result, isolate themselves and lose hope. Those associated with people with HIV and AIDS, especially family members, friends and caregivers, face many of these same experiences in the form of secondary stigma. People living with HIV and AIDS and their families develop various strategies to cope with stigma. Decisions around disclosure depend on whether or not disclosing would help to cope (through care) or make the situation worse (through added stigma). Some cope by participating in networks of people with HIV and actively working in the field of HIV or by confronting stigma in their communities. Others look for alternative explanations for HIV besides sexual transmission and seek comfort, often turning to religion to do so. Stigma impedes various programmatic efforts. Testing, disclosure, prevention and care and support for people with HIV are advocated, but are impeded by stigma. Testing and disclosure are recognized as difficult because of stigma, and prevention is hampered because preventive methods such as condom use or discussing safe sex are considered indications of HIV infection or immoral behaviors and are thus stigmatized. Available care and support are accompanied by judgmental attitudes and isolating behavior, which can result in people with HIV delaying care until absolutely necessary. There are also many positive aspects of the way people deal with HIV and stigma. People express good intentions to not stigmatize those with HIV. Many recognize that their limited knowledge has a role in perpetuating stigma and are keen to learn more. Families, religious organizations and communities provide care, empathy and support for people with HIV and AIDS. Finally, people with HIV themselves overcome the stigma they face to challenge stigmatizing social norms. Our study points to five critical elements that programs aiming to tackle stigma need to address: Create greater recognition of stigma and discrimination. Foster in-depth, applied knowledge about all aspects of HIV and AIDS through a participatory and interactive process. Provide safe spaces to discuss the values and beliefs about sex, morality and death that underlie stigma. Find common language to talk about stigma. Ensure a central, contextually-appropriate and ethically-responsible role for people with HIV and AIDS While all individuals and groups have a role in reducing stigma, policymakers and programmers can start with certain key groups that our study suggests are a priority: Families caring for people living with HIV and AIDS: programs can help families both to cope with the burden of care and also to recognize and modify their own stigmatizing behavior. NGOs and other community-based organizations: NGOs can train their own staff to recognize and deal with stigma, incorporate ways to reduce stigma in all activities, and critically examine their communication methods and materials. Religious and faith-based organizations: these can be supportive of people living with HIV and AIDS in their role as religious leaders and can incorporate ways to reduce stigma in their community service activitie
