AIDS Stigma and Gender: Health Consequences in Urban India

Investigator: Maria Ekstrand, PhD
Sponsor: NIH John F. Fogarty International Center

Location(s): India


AIDS stigma is a major barrier in the fight against HIV/AIDS. It adds to the suffering of those infected and interferes with decisions to seek HIV counseling and testing, disclosure of HIV infection, and seeking treatment for HIV-related problems. Members of marginalized groups often experience dual stigma, forcing them to conceal their lifestyles and making it more difficult for them to access AIDS prevention programs and treatment. Family members and health care workers who provide care to HIV positive patients also become the target of AIDS stigma and discrimination. Our research suggests that these problems exist in India as well. Previous qualitative work in urban India by Bharat has identified AIDS stigma attitudes and overt discrimination, both in the health care setting and the family. This has included refusal to care for HIV infected individuals, additional charges for protective equipment such as extra gloves, masks, fumigation of rooms, and lack of confidentiality. The data also suggest that AIDS stigma in urban India is a gendered phenomenon. Reports of women being neglected and maltreated by their husbands and in-laws were common, and many women were found to have less access to treatment than their husbands. Although many important culture-specific issues were identified in Bharat's qualitative research, there is now a need to extend this work to develop culture-specific quantitative models and measures of AIDS stigma and its health consequences and to examine the prevalence and correlates of stigma in the Indian context. The current investigation has been designed to meet this need. It will build on the qualitative work by Bharat, by incorporating the culture-specific themes into a modified version of a quantitative measure developed and administered in the U.S. by Herek. This measure will be administered in a range of health care settings in two large Indian cities situated in high HIV prevalence states. Specifically we propose to: Examine the nature, extent, and context of AIDS stigma and discrimination by gender, at multiple levels, among people coming into contact with urban health care systems, including a) People Living with HIV/AIDS (PLWHAs), b) families of PLWHAs, c) healthcare staff; and d) general hospital outpatients. 2. Measure the potential health-relevant consequences of AIDS stigma and discrimination between both perpetrators and targets of stigma at each of the above levels. 3. Develop a) a culture-specific theoretical understanding of AIDS stigma and health in urban India as well as b) measures of AIDS stigma that can be used to evaluate future stigma reduction policies and programs in health care and community settings among both victims and perpetrators of stigma. 4. Develop specific data-based program and policy recommendations to reduce AIDS-related stigma and discrimination in urban Indian health care settings and to disseminate these among regional stakeholders.