ORIGINAL RESEARCH article
Front. Health Serv.
Sec. Patient Centered Health Systems
Volume 5 - 2025 | doi: 10.3389/frhs.2025.1611360
This article is part of the Research TopicBreaks that Benefit: International Evidence to Support Innovation in Research, Policy, and Practice Around Unpaid Carer Short BreaksView all 3 articles
Redefining Respite for Family Caregivers: Lessons Learned During and After COVID in America
Provisionally accepted
Rebecca Lynn Utz*
Hannah L MundingerAmber Thompson
Gail TowsleyKara B DasselAlex TerrillAlycia A Bristol- The University of Utah, Salt Lake City, United States
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Respite care is provided to caregivers through in-home respite providers, drop-off day centers, and institutional or overnight facilities, where the caregiver can take a break or get timeaway, while the care-recipient is provided with personal care, companionship, and/or supervision. During the global COVID pandemic (2020+), these types of formal respite services were disrupted, leaving caregivers with little to no access to respite. This study aimed to understand how caregivers accessed and achieved respite when respite services were not readily available, and how their experiences during and following the unprecedented global public health crisis have influenced and informed the way that caregivers achieve the needed and desired respite. Methods: This study integrates several sources of qualitative and descriptive data collected via electronic surveys and semi-structured interviews with family caregivers and respite providers over the past several years (from 2019 to 2024). Results: The following themes were identified: (a) disruption and loss of formal respite services resulted in caregiver isolation, as well as acute and protracted stress, (b) personal networks and shared caregiving arrangements provide opportunities for informal respite, (c) respite is associated with improved caregiver wellbeing, but caregivers often are hesitant to use respite (d) daily activities and routines can provide a form of respite for caregivers, (e) family caregivers showed resilience and adaptability in the face of COVID challenges, revealing the potential benefit of taking "short breaks" throughout the day to achieve a feeling of respite. Discussion and conclusions: These qualitative, descriptive insights provide a blueprint for a reimagined definition of caregiver respite, where respite is conceptualized as an outcome or benefit that caregivers seek and can create on their own, rather than only defining respite as a formal service provided to caregivers by outside organizations. In the face of significant workforce shortages that threaten the widespread availability and access to formal respite services, a re-imagined model of respite has the potential to better meet the respite needs and wishes of family caregivers, and maximize the benefit of short-breaks when formal respite services may not be available.
Keywords: Respite, family caregivers, caregiver burden, COVID, long-term supports and systems (LTSS), long-term care (LTC), home-and community-based services
Received: 14 Apr 2025; Accepted: 23 Jun 2025.
Copyright: © 2025 Utz, Mundinger, Thompson, Towsley, Dassel, Terrill and Bristol. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Rebecca Lynn Utz, The University of Utah, Salt Lake City, United States
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