The involvement of people living with HIV/AIDS in community-based organizations: Contributions and constraints

An important feature of the social and organizational response to the HIV epidemic has been that many people living with HIV/AIDS have demanded to have a say in the development of policies and the delivery of services. Surprisingly little attention has been paid in the literature to this involvement. This paper is based on a participatory action research project that involved 70 people with HIV/AIDS in 15 focus group discussions. Findings from the study show the complexities of translating organizational commitments to involve people with HIV/AIDS into practice. This paper outlines the organizational contributions of people with HIV, and examines the difficulties and obstacles to their meaningful involvement. The paper concludes with a discussion of the challenges of user empowerment and with recommendations for policy and practice.