The Perspectives of Patients and Community Health Workers on the Recruitment and Retention of Latino Individuals in Research in Dialysis: A Qualitative Study

Rationale & Objective: Latino individuals are poorly represented in dialysis research, and little is known about strategies to enhance Latino representation in dialysis research.We sought to characterize the perceived barriers to and facilitators of research recruitment and retention through qualitative interviews with Latino participants receiving dialysis and community health workers (CHWS) who recruit Latinos for clinical trials. Study Design: This qualitative study administered semistructured interviews, which were audio recorded, transcribed verbatim, and analyzed using thematic analysis. Setting & Participants: Adult Latino individuals with dialysis-dependent kidney failure and CHWs with experience recruiting Latino individuals in clinical trial research from 2 urban dialysis centers in Denver, Colorado. Results: We interviewed 13 Latino individuals with dialysis-dependent kidney failure (mean age 55 ± 7 years) and 15 CHWs (mean age 42 ± 13 years). We identified 5 themes (subthemes): valuing knowledge and empowerment (personal health benefit, gain knowledge about kidney disease, helping the community, and financial incentives), building trust between researchers and participants (clear communication about the study risks and benefits, understanding of culture and language, and incorporating family support), culturally concordant connection and respect (taking time to build personal connection, sincerity and warmth of connection, and approaching with respect and an equal footing), uncertainty and doubt about research (confusion about research concepts, discrimination, and language barriers), and conflicting priorities and burden of participation (physical impediments precluding participation, intruding on work priorities, and lack of transportation and phone communication). Limitations: The study was limited to Denver and to participants who had participated in research. Conclusions: Latinos are underrepresented in research, and an understanding of how to increase their participation is essential, especially in areas such as kidney failure, where they are over-represented as patients. The strategies identified in this study offer insights for augmenting representation of Latino participants in dialysis research, an essential step toward achieving health equity.