Engaging Asian American Family Caregivers in Clinical Trials: Awareness, Preferences, and Concerns

Abstract

The purpose of this study was to evaluate Asian American caregivers’ experiences and concerns related to clinical trials and the types of information they trust, use, and prefer before enrolling their older relative in a clinical trial. We conducted an online, cross-sectional survey with Asian American family caregivers between July 2022 and April 2023. Of all respondents ( n = 98), 62.2% reported knowing only a little about clinical trials. Respondents expressed wanting information about (a) the purpose, design, and components of the trial; (b) trial research ethics and safety; and (c) their responsibilities as the caregiver. Greater engagement between clinicians and family caregivers of culturally diverse older adults could help minimize sociocultural barriers to participation in clinical trials. Providing key information to family caregivers in a comprehensive and accessible way without adding burden could help caregivers understand their responsibilities through the clinical trial process.