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Availability of Family Caregiver Programs in US Cancer Centers
IMPORTANCE: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support...
Autores principales: | , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
American Medical Association
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568368/ https://www.ncbi.nlm.nih.gov/pubmed/37819661 http://dx.doi.org/10.1001/jamanetworkopen.2023.37250 |
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author | Odom, J. Nicholas Applebaum, Allison Bakitas, Marie A. Bryant, Tara Currie, Erin Curry, Kayleigh Donovan, Heidi Fernandez, Maria E. Ferrell, Betty Azuero, Andres Gray, Tamryn F. Hendricks, Bailey A. Meier, Diane Nightingale, Chandylen Reinhard, Susan Sannes, Timothy S. Sterba, Katherine Young, Heather M. |
author_facet | Odom, J. Nicholas Applebaum, Allison Bakitas, Marie A. Bryant, Tara Currie, Erin Curry, Kayleigh Donovan, Heidi Fernandez, Maria E. Ferrell, Betty Azuero, Andres Gray, Tamryn F. Hendricks, Bailey A. Meier, Diane Nightingale, Chandylen Reinhard, Susan Sannes, Timothy S. Sterba, Katherine Young, Heather M. |
author_sort | Odom, J. Nicholas |
collection | PubMed |
description | IMPORTANCE: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions. OBJECTIVE: To describe and characterize the availability of family caregiver support programs in US cancer centers. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer–accredited US cancer centers. Data analysis was performed in May and June 2023. MAIN OUTCOMES AND MEASURES: Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies. RESULTS: Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ(2) = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%). CONCLUSIONS AND RELEVANCE: In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions. |
format | Online Article Text |
id | pubmed-10568368 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | American Medical Association |
record_format | MEDLINE/PubMed |
spelling | pubmed-105683682023-10-13 Availability of Family Caregiver Programs in US Cancer Centers Odom, J. Nicholas Applebaum, Allison Bakitas, Marie A. Bryant, Tara Currie, Erin Curry, Kayleigh Donovan, Heidi Fernandez, Maria E. Ferrell, Betty Azuero, Andres Gray, Tamryn F. Hendricks, Bailey A. Meier, Diane Nightingale, Chandylen Reinhard, Susan Sannes, Timothy S. Sterba, Katherine Young, Heather M. JAMA Netw Open Original Investigation IMPORTANCE: Family caregivers provide the majority of health care to the 18 million patients with cancer in the US. Yet despite providing complex medical and nursing care, a large proportion of caregivers report no formal support or training. In recognition of this gap, many interventions to support cancer caregivers have been developed and tested over the past 2 decades. However, there are few system-level data on whether US cancer centers have adopted and implemented these interventions. OBJECTIVE: To describe and characterize the availability of family caregiver support programs in US cancer centers. DESIGN, SETTING, AND PARTICIPANTS: This cross-sectional national survey study was conducted between September 1, 2021, and April 30, 2023. Participants comprised clinical and administrative staff of Commission on Cancer–accredited US cancer centers. Data analysis was performed in May and June 2023. MAIN OUTCOMES AND MEASURES: Survey questions about the availability of 11 types of family caregiver programs (eg, peer mentoring, education classes, and psychosocial programs) were developed after literature review, assessment of similar program evaluation surveys, and discussions among a 13-member national expert advisory committee. Family caregiver programs were defined as structured, planned, and coordinated groups of activities and procedures aimed at specifically supporting family caregivers as part of usual care. Survey responses were tabulated using standard descriptive statistics, including means, proportions, and frequencies. RESULTS: Of the surveys sent to potential respondents at 971 adult cancer centers, 238 were completed (response rate, 24.5%). After nonresponse weight adjustment, most cancer centers (75.4%) had at least 1 family caregiver program; 24.6% had none. The most common program type was information and referral services (53.6%). Cancer centers with no programs were more likely to have smaller annual outpatient volumes (χ(2) = 11.10; P = .011). Few centers had caregiver programs on training in medical and/or nursing tasks (21.7%), caregiver self-care (20.2%), caregiver-specific distress screening (19.3%), peer mentoring (18.9%), and children caregiving for parents (8.3%). Very few programs were developed from published evidence in a journal (8.1%). The top reason why cancer centers selected their programs was community members requesting the program (26.3%); only 12.3% of centers selected their programs based on scientific evidence. Most programs were funded by the cancer center or hospital (58.6%) or by philanthropy (42.4%). CONCLUSIONS AND RELEVANCE: In this survey study, most cancer centers had family caregiver programs; however, a quarter had none. Furthermore, the scope of programming was limited and rarely evidence based, with few centers offering caregiving education and training. These findings suggest that implementation strategies are critically needed to foster uptake of evidence-based caregiver interventions. American Medical Association 2023-10-11 /pmc/articles/PMC10568368/ /pubmed/37819661 http://dx.doi.org/10.1001/jamanetworkopen.2023.37250 Text en Copyright 2023 Odom JN et al. JAMA Network Open. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed under the terms of the CC-BY License. |
spellingShingle | Original Investigation Odom, J. Nicholas Applebaum, Allison Bakitas, Marie A. Bryant, Tara Currie, Erin Curry, Kayleigh Donovan, Heidi Fernandez, Maria E. Ferrell, Betty Azuero, Andres Gray, Tamryn F. Hendricks, Bailey A. Meier, Diane Nightingale, Chandylen Reinhard, Susan Sannes, Timothy S. Sterba, Katherine Young, Heather M. Availability of Family Caregiver Programs in US Cancer Centers |
title | Availability of Family Caregiver Programs in US Cancer Centers |
title_full | Availability of Family Caregiver Programs in US Cancer Centers |
title_fullStr | Availability of Family Caregiver Programs in US Cancer Centers |
title_full_unstemmed | Availability of Family Caregiver Programs in US Cancer Centers |
title_short | Availability of Family Caregiver Programs in US Cancer Centers |
title_sort | availability of family caregiver programs in us cancer centers |
topic | Original Investigation |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568368/ https://www.ncbi.nlm.nih.gov/pubmed/37819661 http://dx.doi.org/10.1001/jamanetworkopen.2023.37250 |
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