Stigma in Women Living with HIV in Jakarta, Indonesia
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The number of women living with HIV (WLWH) in Indonesia increased 344 times between 2008 and 2013, from 3,565 to 12,279. Housewives comprised the largest number of new AIDS cases reported in 2013. Many of these women get stigmatized in their communities once their diagnosis is known, and we know little about these experiences of WLWH in Indonesia. This dissertation examines the stigma experiences of WLWH in Jakarta, Indonesia in three ways. Manuscript one reviews the stigma experiences of WLWH in Southeast Asia in order to synthesize the current knowledge, identify existing gaps and make recommendations for future research. The review showed how society's role-based expectations affect the lives of WLWH. Women across Southeast Asia experienced stigma in their daily lives that affected their financial situation, their adherence to medication, and their access to health care. Future interventions using cultural approaches that address the relationships with their family, health care providers, and community members are urgently needed. Manuscript two examines how stigma theories are applicable to the realities of HIV-positive housewives in Indonesia and to expand upon the current theories. Results show that Goffman's stigma theory and other stigma theories cannot be fully applied to the situation of HIV-positive housewives in Indonesia. Most stigma theories focus on individuals who practiced high-risk behaviors and get rejected for that behavior by society; however, these women did not engage in any of these behaviors. Rather than explaining stigma from the individual to the family, to the community, to the society level, many decisions in Indonesia are made by the family for the individual, and the birth family often stigmatizes the women the most for not following the family's recommendations. Also, future stigma theories need to expand to address the areas of stigma prevention, intervention, and community engagement. Manuscript three explores the women's accounts of how they were treated when their HIV status became known and to describe the women's recommendations for programs to support WLWH in Jakarta, Indonesia. Three themes emerged: being treated negatively, receiving acceptance and support, and impact on their children. Women experienced negative treatments from their families, health care providers (HCPs), and neighbors because these groups were misinformed about HIV, fearful of being infected with HIV, and felt that the women should have to live with the consequences of marrying an injection drug user. Seeing women as a victim and realizing nothing could change the reality of their infection caused women to find acceptance and support in their husband's family. The women reported that their children often suffered from the same negative treatment in the community. HIV-focused education programs were identified as the most-needed step to eliminate the stigma of living with HIV. These programs were viewed as urgently needed for societal education. To positively impact the fears and misconceptions of family, HCPs, and community members, more information about HIV is critically needed in Indonesia. This can be delivered in a form of role-plays, posters, and workshops designed specifically for communities and healthcare providers.
- Nursing - Seattle