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. 2023 Oct 2;6(10):e2337250.
doi: 10.1001/jamanetworkopen.2023.37250.

Availability of Family Caregiver Programs in US Cancer Centers

J Nicholas Odom  1   2   3 , Allison Applebaum  4 , Marie A Bakitas  1   2   3 , Tara Bryant  5 , Erin Currie  1 , Kayleigh Curry  1 , Heidi Donovan  6   7   8 , Maria E Fernandez  9 , Betty Ferrell  10 , Andres Azuero  1 , Tamryn F Gray  11 , Bailey A Hendricks  12 , Diane Meier  13 , Chandylen Nightingale  14 , Susan Reinhard  15 , Timothy S Sannes  16 , Katherine Sterba  17 , Heather M Young  18
Affiliations

Availability of Family Caregiver Programs in US Cancer Centers

J Nicholas Odom et al. JAMA Netw Open. .

Abstract

Importance: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions.

Objective: To describe and characterize the availability of family caregiver support programs in US cancer centers.

Design, setting, and participants: This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer-accredited US cancer centers. Data analysis was performed in May and June 2023.

Main outcomes and measures: Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies.

Results: Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ2 = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%).

Conclusions and relevance: In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.

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Conflict of interest statement

Conflict of Interest Disclosures: Dr Odom reported receiving a grant for this study from the Gordon and Betty Moore Foundation and receiving salary support as principal investigator in connection with this grant during the conduct of the study. Dr Applebaum reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study and receiving personal fees from BeiGene and Blue Note Therapeutics outside the submitted work. Dr Bakitas reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Bryant reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Currie reported receiving payment for research coordination support from the Gordon and Betty Moore Foundation Grant during the course of the study. Mrs. Curry reported receiving payment for research coordination support from the Gordon and Betty Moore Foundation Grant during the course of the study. Dr Donovan reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Fernandez reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Ferrell reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Gray reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Meier reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Nightingale reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Reinhard reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Sannes reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Sterba reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. Dr Young reported receiving consultancy payments as part of the Gordon and Betty Moore Foundation during the conduct of the study. No other disclosures were reported.

Figures

Figure 1.
Figure 1.. Weight-Adjusted Proportion of US Cancer Centers Offering Family Caregiver Programs (N = 238)
Figure 2.
Figure 2.. Weight-Adjusted Primary Sources Influencing Development of Family Caregiver Programs (N = 238)
For this survey item, respondents were asked to “check all that apply.”
Figure 3.
Figure 3.. Weight-Adjusted Reasons Why Family Caregiver Programs Were Chosen (N = 238)
See this image and copyright information in PMC

References

    1. National Alliance for Caregiving . Cancer Caregiving in the U.S.: An Intense Episodic, and Challenging Care Experience. National Alliance for Caregiving; 2016.
    1. National Academies of Sciences, Engineering, and Medicine . Family Caregiving for People With Cancer and Other Serious Illnesses: Proceedings of a Workshop. National Academies Press ; 2023. - PubMed
    1. Yabroff KR, Kim Y. Time costs associated with informal caregiving for cancer survivors. Cancer. 2009;115(suppl 18):4362-4373. doi: 10.1002/cncr.24588 - DOI - PubMed
    1. Dionne-Odom JN, Ejem D, Wells R, et al. How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: a qualitative study. PLoS One. 2019;14(3):e0212967. doi: 10.1371/journal.pone.0212967 - DOI - PMC - PubMed
    1. Hasdenteufel M, Quintard B. Dyadic experiences and psychosocial management of couples facing advanced cancer: a systematic review of the literature. Front Psychol. 2022;13:827947. doi: 10.3389/fpsyg.2022.827947 - DOI - PMC - PubMed