Inclusion of Racially and Ethnically Diverse Samples in Cognitive Rehabilitation Research: An Ethnographic Study of Recruitment and Retention Practices.
Jessica Kersey, Christian Le, Emily Evans, Zaccheus J Ahonle, Patricia Garcia, Anthony H Lequerica, Devina Kumar, Devan Parrott
Author Information
Jessica Kersey: Program in Occupational Therapy, Washington University School of Medicine, St. Louis, MO, USA. Electronic address: jkersey@wustl.edu.
Christian Le: University of Texas at Austin, Austin, TX, USA.
Emily Evans: Department of Physical Therapy Boston University, Sargent College of Health & Rehabilitation Sciences, Boston, MA, USA.
Zaccheus J Ahonle: Department of Counseling, Higher Educational Leadership, Educational Psychology and Foundations, Mississippi State University, MS, USA.
Patricia Garcia: Assistant Professor of Neurology, Assistant Professor of Physical Medicine and Rehabilitation, Indiana University School of Medicine, Indianapolis, IN, USA.
Anthony H Lequerica: Center for Traumatic Brain Injury Research, Kessler Foundation, East Hanover, NJ, USA, and Department of Physical Medicine and Rehabilitation, Rutgers-New Jersey Medical School, Newark, NJ, USA.
Devina Kumar: Physical Therapy Department, University of Rhode Island, Kingston, RI, USA.
Devan Parrott: Associate Professor of Physical Medicine and Rehabilitation, Indiana University School of Medicine, Indianapolis, IN, USA.
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.
