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Full text release has been delayed at the author's request until May 17, 2025

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Stakeholder Perspectives on Family Caregiver Involvement in Oncology Clinical Trial Decision-Making

Blackstone, Eric C
http://orcid.org/0000-0003-1780-514X
http://rave.ohiolink.edu/etdc/view?acc_num=case1712136684507255

Abstract Details

2024, Doctor of Philosophy, Case Western Reserve University, Bioethics and Medical Humanities.
Family caregivers are influential in medical decision-making for cancer patients, yet little is known regarding how they are included in clinical trial decisions. Clinical trial staff are responsible for informed consent in oncology trials and maintain ongoing contact with patients and caregivers, yet they are also overlooked in clinical trial decision-making research. This study fills this knowledge gap by eliciting perspectives from family caregivers and clinical trial staff, key stakeholders in clinical trial decision-making. The specific aims were: (1) to understand how family caregivers of patients with cancer conceptualize their role in clinical trial decision making, (2) to determine factors influential to family caregivers of patients with cancer during the clinical trial decision-making process, and (3) to identify attitudes, beliefs, and approaches used by clinical trial staff to navigate family caregiver involvement in the informed consent process for clinical trials. I conducted focus groups with 10 clinical trial staff and 9 caregivers of patients with cancer, then 15 caregivers participated in semi-structured interviews. Focus group data were used to refine interview guides for subsequent semi-structured interviews with caregivers. Transcripts were coded, then analyzed with NVivo using content analysis. Caregiver themes included promoting patient autonomy, influential factors, and burdens of trial participation. Trial staff themes were approaches to caregiver inclusion, caregiver utility for consent and adherence, and the need for training. Caregivers viewed their role as supporting patient understanding and deferring to the patient as final decision-maker. Hope for therapeutic benefit, oncologist endorsement, and practical barriers (e.g. cost, distance) were influential. Trial staff viewed caregivers as highly influential and relied on them to enhance patient understanding and adherence to the trial protocol. Staff experienced occasional challenges during the consent process such as family disagreement and undue influence. Early communication with caregivers when offering a trial is vital due to their influential role. Clinical trial staff would benefit from training on best practices for inclusion of caregivers, including communication, managing emotions, mediating disagreement, and where to refer caregivers for support. Researchers should consider caregiver burden and potential sources of caregiver support during trial design to minimize barriers to participation.
Sana Loue (Committee Chair)
Jennifer Dorth (Committee Member)
Barbara Daly (Committee Member)
Mark Aulisio (Committee Member)
143 p.
Medical Ethics; Oncology
bioethics; research ethics; clinical trials; oncology; caregivers; decision-making

Recommended Citations

Citations

  • Blackstone, E. C. (2024). Stakeholder Perspectives on Family Caregiver Involvement in Oncology Clinical Trial Decision-Making [Doctoral dissertation, Case Western Reserve University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=case1712136684507255

    APA Style (7th edition)

  • Blackstone, Eric. Stakeholder Perspectives on Family Caregiver Involvement in Oncology Clinical Trial Decision-Making. 2024. Case Western Reserve University, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=case1712136684507255.

    MLA Style (8th edition)

  • Blackstone, Eric. "Stakeholder Perspectives on Family Caregiver Involvement in Oncology Clinical Trial Decision-Making." Doctoral dissertation, Case Western Reserve University, 2024. http://rave.ohiolink.edu/etdc/view?acc_num=case1712136684507255

    Chicago Manual of Style (17th edition)

case1712136684507255
© 2024, all rights reserved.
This open access ETD is published by Case Western Reserve University School of Graduate Studies and OhioLINK.