Scoping review of family caregiver roles in cancer clinical trial decision-making

Background Cancer clinical trials are vital for improving treatments. Clinical trial decision-making has been examined from the perspectives of patients and oncologists, but caregiver perspectives on clinical trials and roles in patient enrollment decisions remain understudied. Methods This scoping review assessed the state of current research on caregiver roles in cancer trial enrollment decision-making. A review of empirical literature was conducted in January 2024 using PubMed and Embase. Articles were evaluated using a review instrument to determine the aspect of decision-making evaluated, the roles of caregivers in clinical trial enrollment decision-making, and recommendations based on study results. Results A total of 23 articles were included in the review. Studies focused on awareness and attitudes about clinical trials (7 articles), hypothetical willingness to participate in a trial (6 articles), and experiences with decision-making (10 articles). Caregiver roles included supporting and deferring to patient autonomy, communicating with clinicians, and taking on burden to facilitate participation in the trial. Researchers recommended including caregivers in clinical trial enrollment discussions and educational outreach, developing interventions to reduce caregiver burden, and future research on caregiver clinical trial decision-making using the framework of relational autonomy. Conclusion Empirical research on caregiver roles in clinical trial enrollment decision-making is limited. Findings of this review suggest that caregivers experience tension between their perceived role of supporting the patient’s autonomy and their own well-being. More research is needed to understand how caregivers navigate these challenges and identify best practices for their inclusion in clinical trial consent.