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Cited by 39Nursing care and researchCancer survivorship and careFamily Support in Illness

Availability of Family Caregiver Programs in US Cancer Centers

Open access
Odom, J. Nicholas, Applebaum, Allison, Bakitas, Marie A., Bryant, Tara, Currie, Erin, Curry, Kayleigh, Donovan, Heidi, Fernandez, Maria E. +10 more·2023·JAMA Network Open
DOI 10.1001/jamanetworkopen.2023.37250PMC PMC10568368
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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 (χ 2 = 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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  • The ENABLE Cornerstone intervention is based on the Pearlin Stress Process of Family Caregiving.

    “Details of the ENABLE Cornerstone intervention, based on the Pearlin Stress Process of Family Caregiving,23 have been described in detail in our previously published protocol.12”

    From Palliative Care Coaching for Family Caregivers of Patients With Advanced Cancer (2026) · cites this paper as [23]

    The Introduction discusses cancer caregiver interventions generally, but does not mention ENABLE Cornerstone or the Pearlin Stress Process. A search for those terms and for the intervention’s theoretical framework found no passage in our copy addressing the claimed basis of ENABLE Cornerstone. (LLM, conf=0.78)

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Research works printed but not linked: 2

  1. [2]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. 36469654
  2. [14]Executive Office of the President. Executive Order 14095: increasing access to high-quality care and supporting caregivers. Fed Regist. 2023; 88(77): 24669- 24676.

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Authors
Odom, J. N., Applebaum, A., Bakitas, M. A., Bryant, T., Currie, E., Curry, K., Donovan, H., Fernandez, M. E., Ferrell, B., Azuero, A., Gray, T. F., Hendricks, B. A., Meier, D., Nightingale, C., Reinhard, S., Sannes, T. S., Sterba, K., & Young, H. M.
Affiliations
  • School of Nursing, The University of Alabama at Birmingham, Birmingham
  • Memorial Sloan Kettering Cancer Center (US)
  • University of Alabama at Birmingham (US)
  • Viva Health Inc, Birmingham, Alabama
  • University of Pittsburgh (US)
  • Department of Health Promotion and Behavioral Sciences, University of Texas Health Science Center at Houston School of Public Health, Houston
  • City Of Hope National Medical Center (US)
  • Harvard University (US)
  • University of Nebraska Medical Center (US)
  • Mount Sinai Medical Center, New York, New York
  • Wake Forest University (US)
  • AARP (US)
  • UMass Memorial Medical Center (US)
  • Medical University of South Carolina (US)
  • University of California, Davis (US)
ORCID
Venue
JAMA Network Open
Publisher
American Medical Association (AMA)
Published
2023-10-11
Volume
6
Issue
10
Pages
e2337250
ISSN
2574-3805 (ISSN-L)
DOI
10.1001/jamanetworkopen.2023.37250
PMC
PMC10568368
OpenAlex
W4387540682
Cited by
39
References
32
Citations by year
2026: 15 · 2025: 9 · 2024: 14 · 2023: 1
FWCI
16.08
Type
journal article
Language
en
Open access
Licence
cc-by
Locations
  • JAMA Network Open (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • Digital Commons-TMC (Texas Medical Center) (submittedVersion)
Funders
  • Gordon and Betty Moore Foundation
  • University of Alabama at Birmingham
  • University of Alabama
  • National Cancer Institute (P30CA008748)
Topics
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Social Sciences › Sociology and Political Science › Family Support in Illness
Keywords
family caregivers, cancer centers, caregiver support programs, program availability, peer mentoring, caregiver education, psychosocial support, caregiver self-care, children as caregivers, program funding, evidence-based practice implementation, Commission on Cancer accreditation, outpatient volume, palliative care, hospice care, home care, community-based care
MeSH terms
Adult, Child, Cross-Sectional Studies, Educational Status, Humans, Neoplasms, Parents, Self Care, Caregivers

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