Caregiver-Reported Roles in Treatment Decision Making in Advanced Cancer and Associated Caregiving Burden and Psychological Distress: A Longitudinal Study
Abstract
Objective To longitudinally examine caregiver-reported treatment decision-making roles and to investigate the associations of these roles with caregiver burden, caregiving esteem, caregiver anxiety, and depression. Methods 281 caregivers of patients with stage IV solid cancers were recruited from outpatient clinics in Singapore. Caregivers were eligible if they were aged ≥21 y, primary informal caregiver, and involved in treatment decision making. We used 3 y of longitudinal data. The decision-making roles were grouped into 4 categories: no family involvement, patient/physician-led, joint, and family-led/alone decision making. Mixed-effects linear regressions were used to assess associations between decision-making roles and caregiver outcomes. Results On average, 72% of caregivers reported family involvement in decision making. Compared with baseline, a higher proportion of caregivers at the 36-mo follow-up reported no family involvement (from 23% to 34%, P = 0.05) and patient/physician-led decision making (from 22% to 34%, P = 0.02), while a lower proportion reported family-led/alone (from 19% to 7%, P = 0.01) decision making. Compared with family-led/alone decision making, caregivers reporting no family involvement reported lower impact on finances (-0.15 [-0.28, -0.01], P = 0.03) while caregivers who reported patient/physician-led decision making reported lower impact on schedule and health (-0.12 [-0.20, -0.03], P = 0.01), and finances (-0.15 [-0.28, -0.03], P = 0.02), a…
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The phenomenon of caregivers internalizing guilt and responsibility is echoed in the global caregiving literature.
“a phenomenon echoed in the global caregiving literature.”
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- Authors
- Ozdemir, S., Ng, S., Chaudhry, I., Teo, I., Malhotra, C., Finkelstein, E. A., & COMPASS Study Group
- Affiliations
- Lien Centre for Palliative Care, Duke-NUS Medical School, Singapore
- Duke-NUS Medical School (SG)
- National University of Singapore (SG)
- Venue
- Medical Decision Making
- Publisher
- SAGE Publications
- Published
- 2022-09-16
- Volume
- 43
- Issue
- 2
- Pages
- 191-202
- ISSN
- 0272-989X (ISSN-L)
- 1552-681X
- OpenAlex
- W4296164279
- Cited by
- 27
- References
- 39
- Citations by year
- 2026: 9 · 2025: 8 · 2024: 7 · 2023: 3
- FWCI
- 3.97
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Medical Decision Making (publishedVersion)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- Funders
- Lien Centre for Palliative Care (LCPC-IN14-0003)
- Singapore Millennium Foundation (2015-SMF-0003)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Health Sciences › Health Professions › General Health Professions › Patient-Provider Communication in Healthcare
- Keywords
- family caregivers, treatment decision-making, advanced cancer, caregiver burden, psychological distress, caregiver anxiety, caregiver depression, family involvement in decision-making, shared decision-making, caregiver well-being
- MeSH terms
- Psychological Distress, Caregiver Burden, Decision Making, Depression, Humans, Longitudinal Studies, Neoplasms, Stress, Psychological, Caregivers
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