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

Abstract Background We aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision‐making. Methods Family caregiver‐reported data were analyzed from a national survey conducted in the United States by CancerCare® (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. χ 2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics. Results Of 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 ≥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). Conclusions Most 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 Contribution The CancerCare® 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.

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).
Conclusions: Most 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 Contribution: The CancerCare ® 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.  1,2,4,5 While identifying the various kinds of decision support roles (e.g., information gatherer, values and illness understanding discussant, option clarifier) that caregivers assume is becoming clearer, less is known proportions of how caregivers are partnering with their patients to make different treatment decisions. For example, it is unknown whether caregivers are more likely to serve as observers providing an opinion or instead serve as equal partners with patients in the treatment decision-making process. Additionally, while qualitative reports have illuminated challenges faced by caregivers when assisting with decisions, such as having enough information or understanding costs, 1,6 little work has attempted to quantify proportions of individuals experiencing these challenges. Given the link between family involvement in decision-making and patient outcomes such as satisfaction and treatment adherence, 6,7 understanding this type of systems-level quantitative data is important to developing and testing broad strategies that enhance the support of families who partner with patients in their healthcare decisions.
Given this, we used data from a large national sample of cancer family caregivers in the United States to describe their involvement and role in patients' cancer treatment decision-making and the challenges faced by family caregivers when assisting with these decisions. Furthermore, we explored associations between the sociodemographic characteristics of caregivers and patient clinical characteristics and the extent to which they encountered challenges to identify subpopulations who may be in most need of support.

| MATERIALS AND METHODS
This was an analysis of data from a large national online US survey of 2703 family and friend caregivers of patients with cancer recruited through national consumer research panels from February to July 2021. The aim of the survey was to gain an understanding of cancer caregivers' needs and experiences in shared decisionmaking. 8

| Statistical approach
Descriptive statistics were used to characterize caregiver respondent-reported sociodemographic and patient clinical characteristics. We assessed involvement in treatment decision-making at both the level of the individual decision areas and in aggregate.

Using data from those respondents completing the 'Decision
Deep Dive' section on one of the five cancer treatment decisionmaking areas, we used cross-tabulations and Pearson χ 2 tests to: (1) examine associations between reporting each of the caregiver roles in patient decision-making and the five treatment decision areas; (2) examine associations between the five treatment decision-making areas and reported challenges faced by caregivers in decision involvement and (3) assess associations between individual sociodemographic characteristics and experiencing one or more challenges when helping their care recipient with decisions.
Multinomial logistic regression was used to examine simultaneously the association between sociodemographic and patient clinical characteristics by reporting one or more challenges in helping patients with cancer treatment decisions. All analyses were conducted using IBM SPSS Statistics ® , Version 25.

| Demographics and clinical characteristics
There were a total of 2703 caregivers who responded to the survey, of whom 2367 (87.6%) reported involvement in at least one type of DIONNE-ODOM ET AL.  Caregivers were White (79.6%), African American (11.0%) and Asian (   worry about signalling a loss of optimism on behalf of a loved one, which is counter to being a 'good' family member or friend. 14 It might also be the case that some oncology clinicians and/or the patients themselves believe this treatment decision should be dictated solely by the patient's wishes. 15 The results suggest that, while families are highly involved in patient treatment decision-making, how they are involved can differ across different decisions. A number of factors may explain these differences, such as (but not limited to) differences in perceived stakes of the decision including the severity of the patient's illness condition, patient preferences, family and cultural values, the perceived impact of the decisions on the caregiver's health, patientcaregiver discordance on decisions, unique challenges of the sociodemographic context (e.g., access to care, insurance) and the treatment decision-making conversation practices and communication skills of clinicians. 3