An exploratory study towards disclosure of status and reduction of stigma for people living with HIV/AIDS in a low income community : the development of a community-based framework.

Abstract

Introduction: Stigma associated with HIV/AIDS creates a barrier to prevention, care and treatment of HIV/AIDS. It further restricts PLWHA from learning about their status, disclosing their status, adopting safe behaviour and accessing services such as antiretroviral treatment. Disclosure of HIV status and a reduction in stigma may contribute to the decrease in new HIV cases. Purpose: The purpose of the study was to develop a community-based framework that would encourage people living with HIV/AIDS to disclose their HIV status and reduce the stigma associated with the disease. Method: This study used the action research method to explore the experiences of stigma and disclosure of HIV status and to develop a community based framework with PLWHA who encouraged disclosure and promoted the reduction of stigma in a community-based setting. The research setting was Bhambayi, an informal settlement in the district of Inanda. Non-probability purposive sampling was used. In-depth interviews with PLWHA that had disclosed their HIV status and focus group discussions with family members, adult children and community members were conducted. Findings: The data was analyzed manually and the following categories and subcategories emerged. The categories were experience of disclosure, stigmatizing reactions, lifestyle changes after disclosure and supports to reduce stigma. Some of the sub-categories were ‘opens out the illness’, gossiping and pointing fingers, discrimination against PLWHA by family and community, changes in relationships, community awareness and formation of support groups. The findings revealed that PLWHA that had disclosed their HIV status had changed their lifestyles. Recommendations were made on the need for nurses to develop community engagement projects and establish partnerships in order to reach out to communities regarding HIV/AIDS. Incorporate HIV/AIDS stigma and discrimination into the current nurses’ curriculum. The need for research is expressed on the evaluation of the framework and conducting similar research in larger communities. Conclusion: PLWHA who had disclosed their HIV-status shared their experience of being HIV-positive and encouraged other people to get tested. The community-based framework to facilitate disclosure and reduce stigma among PLWHA can be operationalised in other informal community-settings.