Availability of family caregiver support in U.S. cancer centers.

Authors

James Odom

James Nicholas Odom

University of Alabama at Birmingham, Birmingham, AL

James Nicholas Odom, Allison J Applebaum, Marie Bakitas, Tara Bryant, Erin Currie, Kayleigh Curry, Heidi AS Donovan, Maria Fernandez, Betty R. Ferrell, Tamryn Gray, Bailey Hendricks, Diane E. Meier, Chandylen L Nightingale, Susan Reinhard, Timothy S. Sannes, Katherine R. Sterba, Heather Young

Organizations

University of Alabama at Birmingham, Birmingham, AL, Memorial Sloan Kettering Cancer Center, New York, NY, Viva Health, Inc., Birmingham, AL, University of Pittsburgh School of Nursing, Pittsburgh, PA, University of Texas Health Science Center, SAN Antonio, TX, City of Hope Medical Center, Duarte, CA, Dana-Farber Cancer Institute, Boston, MA, University of Nebraska Medical Center, Omaha, NE, Mount Sinai Medical Center, New York, NY, Wake Forest University School of Medicine, Winston-Salem, NC, AARP Public Policy Institute, Washington, DC, UMass Memorial Cancer Center, Worchester, MA, Medical University of South Carolina, Charleston, SC, University of California, Davis, Davis, CA

Research Funding

Other Foundation
Gordon and Betty Moore Foundation

Background: Family caregivers provide the majority of health care to the 18 million persons with cancer in the U.S. Yet despite providing complex medical and nursing care, a large proportion report no formal support or training. Recognizing this gap, many interventions to support cancer caregivers have been developed and tested over the past two decades and many have demonstrated effectiveness. However, there is little system-level data on whether U.S. cancer centers have adopted and implemented these interventions. We conducted the first national survey of Commission on Cancer (CoC)-accredited U.S. cancer centers to characterize the availability and types of family caregiver support programs. Methods: We conducted a mail and web-based survey of staff from CoC-accredited U.S. cancer centers regarding their family caregiver support programs (09/2021-03/2023). “Family caregiver programs” were defined as structured, planned, coordinated groups of activities and procedures aimed specifically at supporting family caregivers as part of usual care. Survey questions about 11 types of family caregiver programs (e.g., peer-mentoring, education classes, psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Results: Surveys were sent to potential respondents at 971 adult cancer centers and 238 were completed (response rate: 25%). Most cancer centers had at least 1 family caregiver program (178/238, 75.1%), which was most commonly “Information and Referral Services” (53.4%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (p<.05). Few centers had caregiver programs on: training in medical and/or nursing tasks (21.8%), caregiver self-care (20.3%), caregiver-specific distress screening (19.3%), peer mentoring (18.5%), and minor children caregiving for a parent (8.4%). Very few programs were developed from published evidence in a journal (7.9%). The top reason why cancer centers chose their programs was community members requesting the program (26.5%); only 11.8% chose their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.0%) or by philanthropy (42.4%). Conclusions: While most U.S. cancer centers had some family caregiver programs, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence-based, with few centers offering caregiver education and training. Implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions.

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Abstract Details

Meeting

2023 ASCO Quality Care Symposium

Session Type

Poster Session

Session Title

Poster Session B

Track

Health Care Access, Equity, and Disparities,Technology and Innovation in Quality of Care,Palliative and Supportive Care

Sub Track

Caregivers

Citation

JCO Oncol Pract 19, 2023 (suppl 11; abstr 218)

DOI

10.1200/OP.2023.19.11_suppl.218

Abstract #

218

Poster Bd #

F27

Abstract Disclosures

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