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 scopin...

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Published in:Clinical Trials Vol. 22; no. 6; pp. 745 - 757
Main Authors: Blackstone, Eric C, Daly, Barbara J, Aulisio, Mark P, Dorth, Jennifer A, Loue, Sana
Format: research systematic review tables/charts Journal Article
Published: Sage Publications, Ltd. Dec2025
Online Access:View this record in EBSCOhost
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      dt: Dec2025
      vid: 22
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      pub: Sage Publications, Ltd.
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        10.1177/17407745251366317
        189572186
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        atl: Scoping review of family caregiver roles in cancer clinical trial decision-making.
      aug:
        au:
          Blackstone, Eric C
          Daly, Barbara J
          Aulisio, Mark P
          Dorth, Jennifer A
          Loue, Sana
        affil: Case Western Reserve University School of Medicine, Cleveland, OH, USA
      sug:
        subj:
          Caregiver Attitudes Evaluation
          Caregivers
          Neoplasms
          Clinical Trials
          Decision Making, Family
          Research Subject Recruitment
          Consent (Research)
          Human
          Scoping Review
          PubMed
          Embase
          Family Attitudes
          Health Knowledge
          Family Support
          Patient Autonomy
          Communication
          Health Personnel
          Research Personnel
          Caregiver Burden Prevention and Control
          Spouses
          Extended Family
          Proxy
          Pediatric Care
          Medical Mistrust
          Culture
          Caregivers Education
      ab: 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.
      pubtype: Academic Journal
      doctype:
        research
        systematic review
        tables/charts
        Journal Article
      ougenre: Article
    language: English
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