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

Authors
  • Thomas, Teresa Hagan1
  • Campbell, Grace B2
  • Lee, Young Ji2
  • Roberge, Mary C2
  • Kent, Erin E3
  • Steel, Jennifer L4
  • Posluszny, Donna M5
  • Arida, Janet A2
  • Belcher, Sarah M2
  • Sherwood, Paula R2
  • Donovan, Heidi S2
  • 1 School of Nursing, University of Pittsburgh, Pittsburgh, USA. [email protected]
  • 2 School of Nursing, University of Pittsburgh, Pittsburgh, USA.
  • 3 Gillings School of Global Public Health, University of North Carolina, Chapel Hill, USA.
  • 4 Department of Surgery, University of Pittsburgh, Pittsburgh, USA.
  • 5 Department of Medicine, Hematology/Oncology, University of Pittsburgh, Pittsburgh, USA.
Type
Published Article
Journal
Supportive Care in Cancer
Publisher
Springer-Verlag
Publication Date
May 01, 2021
Volume
29
Issue
5
Pages
2423–2434
Identifiers
DOI: 10.1007/s00520-020-05760-y
PMID: 32918611
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

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. 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. 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. 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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