Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop
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ORIGINAL ARTICLE
Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop Teresa Hagan Thomas 1 & Grace B. Campbell 1 & Young Ji Lee 1 & Mary C. Roberge 1 & Erin E. Kent 2 & Jennifer L. Steel 3 & Donna M. Posluszny 4 & Janet A. Arida 1 & Sarah M. Belcher 1 & Paula R. Sherwood 1 & Heidi S. Donovan 1 Received: 10 June 2020 / Accepted: 8 September 2020 # Springer-Verlag GmbH Germany, part of Springer Nature 2020
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 wellbeing, 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. Keywords Behavioral science . Cancer . Family caregivers . Neoplasms . Supportive care
* Teresa Hagan Thomas [email protected]
Janet A. Arida [email protected] Sarah M. Belcher [email protected]
Grace B. Campbell [email protected]
Paula R. Sherwood [email protected]
Young Ji Lee [email protected]
Heidi S. Donovan [email protected]
Mary C. Roberge [email protected] Erin E. Kent [email protected] Jennifer L. Steel [email protected] Donna M. Posluszny [email protected]
1
School of Nursing, University of Pittsburgh, Pittsburgh, USA
2
Gillings School of Global Public Health, University of North Carolina, Chapel Hill, USA
3
Department of Surgery, University of Pittsburgh, Pittsburgh, USA
4
Department of Medicine, Hematology/Oncology, University of Pittsburgh, Pittsburgh, USA
Support Care Cancer
Background Family caregivers are increasingly recognized as instrumental partners in the cancer healthcare experience [1–3]. While caregivers vary in their relationship to pa
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