title: The involvement of people living with HIV/AIDS in community-based organizations: contributions and constraints.
abstract: 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.
authors.affiliation: AIDS Committee of Toronto, Canada. croy@astoronto.org
authors.forename: C M
authors.initials: CM
authors.lastname: Roy
authors.forename: R
authors.initials: R
authors.lastname: Cain
mesh_terms: D000163:Acquired Immunodeficiency Syndrome / Q000523:psychology / Q000628:therapy; D003153:Community Health Services / Q000458:organization & administration*; D003695:Delivery of Health Care / Q000458:organization & administration*; D017144:Focus Groups; D015658:HIV Infections / Q000523:psychology / Q000628:therapy*; D006291:Health Policy; D006801:Humans; D010358:Patient Participation; D011050:Policy Making