Cited by 35Nursing care and researchCancer survivorship and careFamily Caregiving in Mental Illness

Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop

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Thomas, Teresa Hagan, Campbell, Grace B., Lee, Young Ji, Roberge, Mary C., Kent, Erin E., Steel, Jennifer L., Posluszny, Donna M., Arida, Janet A. +3 more·2021·Supportive Care in Cancer

Abstract

Purpose Caregivers of people with cancer represent a large, overburdened, and under-recognized part of the cancer care workforce. Research efforts to address the unmet needs of these caregivers are expanding with studies focused on caregivers' skill sets, physical and psychological health, and integration into healthcare delivery. As this field of research continues to expand, integrating caregivers' input is vital to studies to ensure that research aligns with their experiences. Methods This is a focus group study of 15 cancer caregivers conducted during a cancer caregiving workshop at the University of Pittsburgh in February 2020. During the workshop, caregivers reviewed, critiqued, and proposed priorities to support caregivers of adults with cancer. We used a multistage consensus building approach to identify priority areas of research and clinical practice to address caregivers' experiences and needs. We used descriptive content analysis to summarize caregivers' priorities. Results Caregiver-identified priorities included (1) training and information about cancer and treatment, (2) caregiver integration into the patient's healthcare delivery, (3) assistance with navigating the healthcare system, (4) focus on caregiver health and well-being, and (5) policy reform to address caregiver needs. We identified ways in which these priorities can inform cancer caregiving research and practice. Conclusion These recommendations should be considered by researchers, clinicians, cancer center leadership, and policymakers interested in creating caregiver-focused research protocols, interventions, and support systems.

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  • Previous findings indicate that information provision and family caregiver training are among the most frequently reported unmet needs in cancer care.

    “These results support previous findings that information provision and family caregiver training are among the most frequently reported unmet needs in cancer care.”

    From The burdens, coping strategies, and unmet needs of family caregivers of Chinese patients with lymphoma receiving commercial CAR-T-cell therapy: A qualitative study (2026) · cites this paper as [70]

    The Results section identifies information and training about cancer and treatment as a caregiver priority, and participants described lacking adequate information and training after hospital discharge. The paper does not establish that these were among the most frequently reported unmet needs across cancer care; it reports priorities from a caregiver workshop, not a frequency ranking. (LLM, conf=0.86)

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  1. [5]Hunt GG, Longacre ML, Kent EE, Weber-Raley L (2016) Cancer caregiving in the U.S. An intense, episodic, and challenging care experience. In: National Alliance for Caregiving, vol 2016, p 34

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Authors
Thomas, T. H., Campbell, G. B., Lee, Y. J., Roberge, M. C., Kent, E. E., Steel, J. L., Posluszny, D. M., Arida, J. A., Belcher, S. M., Sherwood, P. R., & Donovan, H. S.
Affiliations
  • University of Pittsburgh (US)
  • University of North Carolina at Chapel Hill (US)
Corresponding author
Thomas, Teresa Hagan
Venue
Supportive Care in Cancer
Published
2020-09-12
Volume
29
Issue
5
Pages
2423-2434
ISSN
  • 0941-4355 (ISSN-L)
  • 1433-7339
OpenAlex
W3086533456
Cited by
34
References
35
Citations by year
2026: 4 · 2025: 3 · 2024: 9 · 2023: 8 · 2022: 5 · 2021: 5
FWCI
6.95
Type
journal article
Language
en
Open access
Locations
  • Supportive Care in Cancer (publishedVersion)
  • PubMed (publishedVersion)
  • PubMed Central (acceptedVersion)
Funders
  • Health Policy Institute, University of Pittsburgh
  • National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR 90RTGE0002-01-00)
  • American Cancer Society (MSRG-18-051-51)
  • National Palliative Care Research Center (Career Development Award)
  • National Cancer Institute (P30CA047904)
Topics
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
Keywords
cancer caregivers, caregiver needs, caregiver priorities, health system navigation, caregiver education, caregiver support systems, consensus building
MeSH terms
Stakeholder Participation, Aged, Delivery of Health Care, Female, Humans, Male, Neoplasms, Caregivers

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