Inclusion of Racially and Ethnically Diverse Samples in Cognitive Rehabilitation Research: An Ethnographic Study of Recruitment and Retention Practices.

Abstract

Objective: To describe the recruitment and retention practices of brain injury rehabilitation researchers and factors affecting the inclusion of racially and ethnically diverse research participants.

Design: Ethnographic study using surveys and qualitative interviews.

Setting: Virtual.

Participants: Eleven investigators who published cognitive rehabilitation intervention studies.

Interventions: N/A MAIN OUTCOMES: Participants completed a survey describing strategies that have shown promise for the recruitment and retention of diverse participants. They then completed a qualitative interview to describe their priorities, the perceived effectiveness of their practices, and the challenges to recruiting representative samples. Interviews were analyzed using thematic analysis.

Results: Investigators reported moderate confidence in their knowledge of promising recruitment strategies but low confidence in implementing those strategies. Qualitative themes were 1) balancing competing recruitment and retention priorities, 2) building relationships with participants and communities, and 3) research infrastructure and policies. Key factors influencing recruitment and retention practices included research study and research team characteristics, institutional infrastructure and policies, local contextual factors, and national academic community infrastructure and norms.

Conclusions: Brain injury rehabilitation research faces significant challenges in achieving representation of racially and ethnically diverse participants. Systemic changes are needed at the study, institutional, and national levels to support more equitable clinical trial enrollment and reduce health disparities for marginalized brain injury survivors.