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Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey
Journal article   Open access   Peer reviewed

Family caregiver roles and challenges in assisting patients with cancer treatment decision-making: Analysis of data from a national survey

James N. Dionne-Odom, Erin E. Kent, Gabrielle B. Rocque, Andres Azuero, Erin R. Harrell, Shena Gazaway, Rhiannon D. Reed, Reed W. Bratches, Avery C. Bechthold, Kyungmi Lee, …
Health expectations : an international journal of public participation in health care and health policy, Vol.26(5), pp.1965-1976
10/01/2023
DOI: 10.1111/hex.13805
PMID: 37394734
url
https://doi.org/10.1111/hex.13805View
Published (Version of record) Open Access

Abstract

BackgroundWe aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision-making. MethodsFamily caregiver-reported data were analyzed from a national survey conducted in the United States by CancerCare & REG; (2/2021-7/2021). Four select-all-that-apply caregiver roles were explored: (1) observer (patient as primary decision-maker); (2) primary decision-maker; (3) shared decision-maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. & chi;(2) and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. ResultsOf 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision-making role, 53.9% a shared decision-making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced & GE;1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = -0.581, Wald = 10.69, p < .01). ConclusionsMost caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers. Patient or Public ContributionThe CancerCare & REG; survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision-making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.
 Health Care Sciences & Services Health Policy & Services Life Sciences & Biomedicine Public, Environmental & Occupational Health Science & Technology

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