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

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  • Chung, Kimberly
  • Lounsbury, David W.

Abstract

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.

Suggested Citation

  • Chung, Kimberly & Lounsbury, David W., 2006. "The role of power, process, and relationships in participatory research for statewide HIV/AIDS programming," Social Science & Medicine, Elsevier, vol. 63(8), pages 2129-2140, October.
    • Handle: RePEc:eee:socmed:v:63:y:2006:i:8:p:2129-2140
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    1. Rifkin, Susan B. & Muller, Frits & Bichmann, Wolfgang, 1988. "Primary health care: on measuring participation," Social Science & Medicine, Elsevier, vol. 26(9), pages 931-940, January.
    2. Wallerstein, Nina, 1999. "Power between evaluator and community: research relationships within New Mexico's healthier communities," Social Science & Medicine, Elsevier, vol. 49(1), pages 39-53, July.
    3. Naylor, Patti-Jean & Wharf-Higgins, Joan & Blair, Lynne & Green, Lawrence & O'Connor, Brian, 2002. "Evaluating the participatory process in a community-based heart health project," Social Science & Medicine, Elsevier, vol. 55(7), pages 1173-1187, October.
    4. Jewkes, Rachel & Murcott, Anne, 1998. "Community representatives: Representing the "community"?," Social Science & Medicine, Elsevier, vol. 46(7), pages 843-858, April.
    5. Cornwall, Andrea & Jewkes, Rachel, 1995. "What is participatory research?," Social Science & Medicine, Elsevier, vol. 41(12), pages 1667-1676, December.
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    1. Guta, Adrian & Strike, Carol & Flicker, Sarah & J. Murray, Stuart & Upshur, Ross & Myers, Ted, 2014. "Governing through community-based research: Lessons from the Canadian HIV research sector," Social Science & Medicine, Elsevier, vol. 123(C), pages 250-261.
    2. Tabea Böttger & Silke Dennhardt & Julia Knape & Ulrike Marotzki, 2022. "“Back into Life—With a Power Wheelchair”: Learning from People with Severe Stroke through a Participatory Photovoice Study in a Metropolitan Area in Germany," IJERPH, MDPI, vol. 19(17), pages 1-25, August.

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