4.7 Article

The role of power, process, and relationships in participatory research for statewide HIV/AIDS programming

Journal

SOCIAL SCIENCE & MEDICINE
Volume 63, Issue 8, Pages 2129-2140

Publisher

PERGAMON-ELSEVIER SCIENCE LTD
DOI: 10.1016/j.socscimed.2006.04.035

Keywords

participatory research; community participation; community-based research; power; HIV/AIDS; Ryan White Care Act; USA

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This paper presents a case study of a participatory process that was used to understand the needs of persons living with HIV/AIDS in a US state. The case illustrates that participation in a community-based research project is a dynamic phenomenon that must be negotiated among an evolving web of roles and relationships. Using a continuum to model the multiple modes of community participation, we follow the changing nature of participation over the course of a single project. Our analysis illustrates the different levels of participation given by the continuum as well as the dynamic nature of participation. A shared understanding of participation evolves as the roles and relationships of those involved are negotiated and renegotiated. However, lack of reflection over power differentials can lead to disempowering outcomes even after achieving a seemingly participatory process. The case reveals that failing to resolve divergent assumptions about power and purpose can lead to fissures that are difficult to overcome. (c) 2006 Elsevier Ltd. All rights reserved.

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