Caregiver recruitment and engagement: Identifying best practices and strategies for including family caregivers of Veterans in health services research

Abstract: Background: Family caregivers are integral to the care of patients and possess important perspectives regarding improving healthcare delivery. Yet, caregivers are seldom engaged in research in part because of challenges recruiting and retaining them. We sought to identify best practices for recruiting and retaining caregivers in health services research, drawing from researcher experiences in the Department of Veterans Affairs (VA). Methods: We identified VA Health Systems Research (HSR) funded studies that focused on caregivers of Veterans by reviewing ongoing and completed projects from 2017 through 2024. "Caregiver" was defined as family members and/or friends who helped Veterans manage their health issues. We interviewed principal investigators and study team members to characterize their recruitment and retention practices. We further examined their studies' published methods and results to summarize the breadth of strategies used, and to identify those that were most effective based on informants' impressions of what worked. Results: Seventeen research team members from 11 studies at six sites participated. Studies were observational (8 studies, n = 4183), experimental (2 studies, n = 237), and implementation-focused (1 study, n = 435), and included 4855 caregivers. All studies utilized multiple recruitment approaches, most commonly directly approaching potential participants, utilizing administrative data, and advertising. The most successful practices were: (1) directly approaching Veterans and caregivers; (2) recruiting through clinics; (3) reviewing registries of prior study participants; and (4) using administrative data to identify potential candidates. Flexible, virtual scheduling and individualized participant activities utilizing multiple participation modalities were helpful for caregiver retention. Conclusions: Successfully recruiting and retaining caregivers requires multiple strategies, and researcher flexibility. Health services researchers should prioritize direct outreach, outreach through trusted clinicians, and establishing registries to optimize efforts. Researchers should also use methods that allow for flexible, individualized participation to maximize retention. Enhancing caregiver-focused research through optimizing caregiver engagement will ultimately improve the evidence base necessary to inform care delivery and policy.