How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: A qualitative study
Open accessAbstract
AIMS: Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver's role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. METHODS: Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. FINDINGS: Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient's partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported "fair" or "poor" health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients' upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient's treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing "what if" scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. CONCLUSIONS: These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.
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African American and rural-dwelling family caregivers of patients with newly diagnosed advanced cancer face circumstances that can exacerbate challenges of the role.
“African American and rural-dwelling family caregivers of patients with newly diagnosed advanced cancer not only shoulder a demanding set of caregiving responsibilities but also face circumstances that can exacerbate challenges of the role.1,2”
From Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer (2026) · cites this paper as [2]
The Discussion describes employment, finances, and childcare as collateral challenges for cancer caregivers, and the study’s participants were rural-dwelling. But the study does not establish that African American or rural-dwelling caregivers face distinct circumstances that exacerbate those challenges. The Findings report that caregivers were mostly white and had provided care for more than two years, rather than studying caregivers specifically at a new diagnosis. (LLM, conf=0.84)
Experimental — accuracy not yet measuredThere has been a lack of culturally responsive interventions for historically underresourced groups of family caregivers of patients with advanced cancer, namely African American and rural-dwelling individuals.
“There has been a lack of culturally responsive interventions for historically underresourced groups of family caregivers of patients with advanced cancer, namely African American and rural-dwelling individuals.2,11”
From Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer (2026) · cites this paper as [2]
The Discussion (page unavailable) says there is a lack of effective interventions to support families’ decision-partnering role in advanced cancer care. The Methods describe a study of rural-dwelling caregivers, but the paper does not establish a lack of culturally responsive interventions specifically for African American and rural-dwelling caregivers. (LLM, conf=0.84)
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- Authors
- Dionne-Odom, J. N., Ejem, D., Wells, R., Barnato, A. E., Taylor, R. A., Rocque, G. B., Turkman, Y. E., Kenny, M., Ivankova, N. V., Bakitas, M. A., & Martin, M. Y.
- Affiliations
- University of Alabama at Birmingham (US)
- Dartmouth College (US)
- University of Tennessee Health Science Center (US)
- Corresponding author
- Dionne-Odom, J. Nicholas
- ORCID
- Venue
- PLOS ONE
- Publisher
- Public Library of Science (PLoS)
- Published
- 2019-03-13
- Volume
- 14
- Issue
- 3
- Pages
- e0212967
- ISSN
- 1932-6203 (ISSN-L)
- PMC
- PMC6415885
- OpenAlex
- W2921137266
- Cited by
- 111
- References
- 52
- Citations by year
- 2026: 13 · 2025: 13 · 2024: 25 · 2023: 14 · 2022: 18 · 2021: 14 · 2020: 12 · 2019: 2
- FWCI
- 10.59
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- PLoS ONE (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- RePEc: Research Papers in Economics (submittedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Funders
- National Palliative Care Research Center
- National Institute of Nursing Research (R00NR015903)
- 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 › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
- Keywords
- family caregivers, advanced cancer, metastatic cancer, healthcare decision-making, surrogate decision-making, community-dwelling patients, patient values, decision support interventions, caregiver role, work arrangements
- MeSH terms
- Adult, Aged, Aged, 80 and over, Decision Making, Decision Support Techniques, Family, Family Relations, Female, Humans, Male, Middle Aged, Neoplasms, Caregivers, Qualitative Research
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