"I Have an Evil Child at My House:" Stigma and HIV/AIDS Management in a South African Community
July 8, 2005
The study examines the social roots of stigma through a case study of HIV/AIDS management among young people in a South African community, drawing from interviews, focus groups and fieldworker diaries of a youth HIV prevention program. The researchers refer to the program as being run by the Christian Youth Alliance (CYA), although to preserve confidentiality, the group's real name is not given. The case study comprised 3-hour interviews conducted with 44 people in 2003, 11 focus groups involving a total of 55 people, and fieldworker diaries. Participants included young people and peer educators both in school and out, teachers, a school principal, community health workers, community leaders (traditional leaders, the local ward councilor, youth leaders and members of the local development committee), prevention program staff, a traditional healer, clinic nurses, parents, people with AIDS, church ministers, a government official and representatives of a multinational company that employs local people.
The investigators used thematic content analyses to analyze interviews. Stigma emerged as a central topic, the investigators found, "and the goal of the preliminary data analysis was to identify the forms taken by stigma and its effects on the CYA's work. A more detailed secondary analysis sought to identify the material, symbolic and organizational contexts associated with stigmatization of people with AIDS," they wrote.
Anecdotes told of children with HIV whose mothers say, "I have an evil child at my house who has contracted the disease," families who hide ill relatives from health workers, refusal to collect dead relatives' bodies, and other stories of rejection and prejudice along with a few about compassion and care. Some families did not disown or hide their relatives with AIDS, but sometimes even these did not disclose the true cause of illness and death.
Informants reported that stigma originated in the association between HIV/AIDS and sex and the link many make between sex, sin and immorality. Problems of poverty, political disempowerment, poor intergenerational communication and the failure of community networks to serve as resources for HIV prevention among young people also contribute to stigma, the researchers found. Concerns about "respectability" lead some community members to stigmatize HIV/AIDS patients to raise their own self-esteem. Lack of national government leadership and services are associated with lack of local leadership and services complicate the issue as well.
The authors argue that an important first step in combating the problem of stigmatization would be "initiatives that work toward facilitating the participation of local community groups in critical thinking programs. Such programs would aim to expose, confront, and resist the webs of signification and practice that sustain stigma and undermine the confidence of communities and individuals who might otherwise challenge it. Our case study suggests that programs could include critical thinking about the marginalization of young people and women, denial of young people's sexuality, and, more particularly, denial of the sexual activities of women." Suggesting that programs might also focus on social institutions such as the church, the family and the traditional leadership system contribute to the situation, the authors conclude: "Community participation has a key role to play in promoting forms of critical consciousness that both expose and challenge the unequal social relations drawn on and sustained by stigma. As such, it should stand alongside education and legislation as a powerful weapon against stigma."
American Journal of Public Health
05.2005; Vol. 95; No. 5: P. 808-805; Catherine Campbell, Ph.D.; Carol Ann Foulis, M.A.; Sbongile Maimane; Zweni Siblya
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