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

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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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Data availability

Data is available upon request.

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Funding

(Donovan) The contents of this manuscript were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number 90RTGE0002-01-00). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS). The contents of this manuscript do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.

(Donovan) Health Policy Institute, University of Pittsburgh

(Thomas) American Cancer Society Mentored Research Scholar Grant MSRG-18-051-51

(Thomas) National Palliative Care Research Center Career Development Award

(UPMC Hillman Cancer Center) P30CA047904

Author information

Authors and Affiliations

  1. School of Nursing, University of Pittsburgh, Pittsburgh, USA

    Teresa Hagan Thomas, Grace B. Campbell, Young Ji Lee, Mary C. Roberge, Janet A. Arida, Sarah M. Belcher, Paula R. Sherwood & Heidi S. Donovan

  2. Gillings School of Global Public Health, University of North Carolina, Chapel Hill, USA

    Erin E. Kent

  3. Department of Surgery, University of Pittsburgh, Pittsburgh, USA

    Jennifer L. Steel

  4. Department of Medicine, Hematology/Oncology, University of Pittsburgh, Pittsburgh, USA

    Donna M. Posluszny

Authors
  1. Teresa Hagan Thomas
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  2. Grace B. Campbell
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  3. Young Ji Lee
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  4. Mary C. Roberge
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  5. Erin E. Kent
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  6. Jennifer L. Steel
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  7. Donna M. Posluszny
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  8. Janet A. Arida
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  9. Sarah M. Belcher
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  10. Paula R. Sherwood
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  11. Heidi S. Donovan
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Contributions

Study conceptualization: Thomas, Donovan, Posluszny, and Sherwood

Data collection: Thomas, Campbell, Lee, Roberge, Kent, Steel, Posluszny, Arida, Belcher, and Donovan

Data analysis: Thomas, Campbell, Lee, Roberge, Kent, Steel, Posluszny, Arida, Belcher, and Donovan

Manuscript review and approval: Thomas, Campbell, Lee, Roberge, Kent, Steel, Posluszny, Arida, Belcher, Sherwood, and Donovan

Corresponding author

Correspondence to Teresa Hagan Thomas.

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Conflict of interest

The authors have no conflicts of interest or competing interests to report.

Ethics approval

This study was approved by the University of Pittsburgh Institutional Review Board (STUDY20010122).

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All participants provided consent to participate in this research study before participating.

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Not applicable.

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Thomas, T.H., Campbell, G.B., Lee, Y.J. et al. Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop. Support Care Cancer 29, 2423–2434 (2021). https://doi.org/10.1007/s00520-020-05760-y

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  • DOI: https://doi.org/10.1007/s00520-020-05760-y

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