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.
Keywords: Community-engaged research; Hypertension; Lay health advisors; Patient and public involvement; Qualitative study.
Community health workers (CHWs) are usually community members trained broadly to help the community address health issues. Community members (including patients and the public) who have experiences with specific diseases can be important resources in health research, contributing critical on-the-ground feedback and information about and to their communities, especially those with high rates of health disparities. In this study, CHWs with personal experience as patients with hypertension were trained to become lay health advisors (LHAs) specifically to assist with a hypertension research study in Cleveland, Ohio. This study explored LHAs’ experiences with their training for the research study and the study itself, which ended early because the project did not get enough participants. Eight African American LHAs participated in a focus group in the fall of 2019, sharing their experiences. The focus groups were recorded on a digital device and a professional transcriptionist transcribed them. We found that the LHA trainees learned a lot from the training. They were passionate and excited about working with the community work for the project, but also felt used by the project leadership, and not included in important decisions. When the project ended, they also felt their reputations were damaged. Finally, the experience with the project led to LHAs wanting to not participate in research anymore. We conclude that projects should include strong and clear lines of communication, better integrate LHAs into research studies as partners and honor their expertise.
© 2024. The Author(s).