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Stakeholder Perspectives on Family Caregiver Involvement in Oncology Clinical Trial Decision-Making
Stakeholder Perspectives on Family Caregiver Involvement in Oncology Clinical Trial Decision-Making
상세정보
- 자료유형
- 학위논문 서양
- 최종처리일시
- 20260202104730
- ISBN
- 9798315778608
- DDC
- 616.99
- 서명/저자
- Stakeholder Perspectives on Family Caregiver Involvement in Oncology Clinical Trial Decision-Making
- 발행사항
- [Sl] : Case Western Reserve University, 2024
- 발행사항
- Ann Arbor : ProQuest Dissertations & Theses, 2024
- 형태사항
- 144 p
- 주기사항
- Source: Dissertations Abstracts International, Volume: 86-12, Section: B.
- 학위논문주기
- Thesis (Ph.D.)--Case Western Reserve University, 2024.
- 초록/해제
- 요약Family 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.
- 일반주제명
- Oncology
- 일반주제명
- Medical ethics
- 키워드
- Bioethics
- 키워드
- Research ethics
- 키워드
- Clinical trials
- 키워드
- Caregivers
- 키워드
- Decision-making
- 기타저자
- Case Western Reserve University Bioethics and Medical Humanities
- 기본자료저록
- Dissertations Abstracts International. 86-12B.
- 전자적 위치 및 접속
- 로그인 후 원문을 볼 수 있습니다.
MARC
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■020 ▼a9798315778608
■035 ▼a(MiAaPQ)AAI32142381
■040 ▼aMiAaPQ▼cMiAaPQ
■0820 ▼a616.99
■1001 ▼aBlackstone, Eric.
■24510▼aStakeholder Perspectives on Family Caregiver Involvement in Oncology Clinical Trial Decision-Making
■260 ▼a[Sl]▼bCase Western Reserve University▼c2024
■260 1▼aAnn Arbor▼bProQuest Dissertations & Theses▼c2024
■300 ▼a144 p
■500 ▼aSource: Dissertations Abstracts International, Volume: 86-12, Section: B.
■5021 ▼aThesis (Ph.D.)--Case Western Reserve University, 2024.
■520 ▼aFamily 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.
■590 ▼aSchool code: 0042.
■650 4▼aOncology
■650 4▼aMedical ethics
■653 ▼aBioethics
■653 ▼aResearch ethics
■653 ▼aClinical trials
■653 ▼aCaregivers
■653 ▼aDecision-making
■690 ▼a0497
■690 ▼a0992
■690 ▼a0769
■71020▼aCase Western Reserve University▼bBioethics and Medical Humanities.
■7730 ▼tDissertations Abstracts International▼g86-12B.
■790 ▼a0042
■791 ▼aPh.D.
■792 ▼a2024
■793 ▼aEnglish
■85640▼uhttp://www.riss.kr/pdu/ddodLink.do?id=T17358638▼nKERIS▼z이 자료의 원문은 한국교육학술정보원에서 제공합니다.
