Women's experience of being HIV positive : the stigma related to HIV and disclosure of their status

Abstract

This project is part of a larger study of the Serithi project in which semi-structured interviews were conducted with three hundred and seventeen HIV positive women from disadvantaged locations of Tshwane. In this study, the focus is on women’s experiences of an HIV positive diagnosis and the stigma associated with HIV and their level of disclosure. An analysis was made to whom they disclose, why they choose to disclose and the reaction of the people disclosed to, as well as reasons some people decided not to disclose. Theoretically, the Social Psychology approach was used to provide a theoretical framework as it attempts to understand the relationship between individuals, groups, and behaviour, invariably understanding the relationship between HIV related stigma experienced and the levels of disclosure of the women. As the aim of this study is to gain a deeper understanding of the experiences of HIV related stigma and disclosure encountered by South African HIV positive women, a combination of qualitative and quantitative measures was used. It was established from the research results that upon diagnosis, most women experience negative emotions and thoughts including shock, fear of death, sadness, anger, self-blame and denial. These reactions, however, over time seem to fluctuate and positive reactions such as acceptance of the HIV positive diagnosis and positive thinking come to the fore. Of the three hundred and seventeen respondents used in this study, only one hundred and ninety three women (61%) disclosed their HIV status to at least one person, being either partners (44%), family members (16%), parents (12%), friends (11%), in-laws (1,5%), and or people at work of which less than one percent of the women disclosed to, while 124 (39%) of the women did not disclose to anyone with the exception of the research assistants involved in this study. The issue of disclosure was analysed, and the most people disclosed to were partners, family members and parents. The women stated that it was easy for them to disclose to these people because they knew that they would not be judged and ridiculed. Instead, they felt assured that they would receive unconditional acceptance and support upon disclosure. Reasons for not disclosing included the fear of discrimination, rejection and blame, lack of trust and a supportive relationship. HIV related stigma was assessed through three different types of stigma, namely; 1) Experienced personal stigma (expectations of stigmatised individuals of how others will react to their condition), 2) Perceived community stigma (how the respondents think most people in the community feel and react towards HIV) and 3) Enacted stigma (the actual experiences of discriminatory acts due to their HIV positive status). From these assessments, it was established that respondents perceive community stigma to be the most prevalent and more negative than felt or personal stigma and enacted stigma, which was the least negative. Correlations between the various measures of stigma and disclosure showed that the women’s decision to disclose their HIV status is not only related to their stigma scores. Levels of personal stigma only played a role in disclosure to family members and friends and not in disclosure to partners. Perceived community stigma, which was high, did not have an impact on the level of disclosure. Therefore, the decision to disclose one’s HIV status is not totally influenced or dependent on HIV related stigma because other variables such as the quality of relationships also play a role. This raises the opportunity for further research as to what other aspects may have an impact on the issue of disclosure of one’s HIV positive status.