“They should’ve talked to us more”: lay health advisors’ experiences with community-engaged hypertension research

Abstract

Background Lay health advisors (LHAs) are increasingly being used to increase patient and public involvement in research, disseminate health information, and work toward preventing health disparities within communities at risk. This research explored LHAs’ experiences with training and recruiting for a hypertension research project which ended due to minimal enrollment. Methods The methodological design was qualitative description. One face-to-face semi-structured focus group was held with eight African American LHAs in Cleveland, Ohio, in the fall of 2019. The focus group was digitally recorded and transcribed by a professional transcriptionist and thematically analyzed. Results Trainees reflected on how much they learned from the training and described feeling passionate and excited about their community work for the project. We identified three key themes from the data: (1) Systemic and Institutional Factors Affected LHAs’ Experiences (subthemes: Unnecessarily Burdensome Requirements and Exploitation of Community Members for Research Gain; (2) Feeling Used Yet Unseen: Exclusion from Decision-Making Processes; (3) Worrying that Project Termination Damaged their Reputation; and (4) Disengaging from Research. We share lessons learned, including the need for LHAs’ expertise to be integrated into research studies, and for projects to establish clear communication and expectations regarding research rigor and requirements. Conclusion Our results have implications for future studies attempting to build equitable and strong academic-community relationships to yield rigorous and useful research to reduce health disparities.