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

Kimberly Chung, David W. Lounsbury

Research output: Contribution to journalArticle

21 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)2129-2140
Number of pages12
JournalSocial Science and Medicine
Volume63
Issue number8
DOIs
StatePublished - Oct 1 2006
Externally publishedYes

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Keywords

  • Community participation
  • Community-based research
  • HIV/AIDS
  • Participatory research
  • Power
  • Ryan White Care Act
  • USA

ASJC Scopus subject areas

  • Health(social science)
  • History and Philosophy of Science

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