Women's experiences in a community-based participatory research randomized controlled trial

Shawn M Kneipp1, Barbara J Lutz, Catherine Levonian

  • 1University of North Carolina at Chapel Hill, Chapel Hill, North Carolina 27599, USA. skneipp@email.unc.edu

Integrating community-based participatory research (CBPR) into traditional study designs can enhance outcomes in studies with disadvantaged groups. Little is known, however, about study participants' experiences with these approaches, the underlying processes involved in creating more positive outcomes, and whether undesirable effects on study outcomes occur simultaneously. We conducted focus group interviews with 31 disadvantaged women who participated in a CBPR-driven randomized controlled trial (RCT) both to explore their study experiences and to obtain their interpretations of select study findings. Using dimensional analysis, we found the tailored health questionnaire, treatment by study staff members, and RCT participants' understandings of and responses to randomization were salient to what women described as transformative experiences that occurred over the course of the RCT. These findings have implications for understanding how CBPR and non-CBPR aspects of interventions and study designs have the potential to affect both process and endpoint study outcomes.

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