Building a shared measurement framework for “breaks that benefit” family caregivers: a call to action for respite research, policy, and practice
- 1College of Nursing, Marquette University, Milwaukee, WI, United States
- 2Munroe-Meyer Institute, University of Nebraska Medical Center, Omaha, NE, United States
Abstract
Family caregivers—individuals who serve in unpaid, informal caregiving roles—are essential to health and social care systems worldwide, yet sustaining their ability to provide care requires access to meaningful respite, often referred to internationally as “short breaks.” Although respite is widely recognized as a critical support, the evidence base remains fragmented because studies use inconsistent terminology, outcome measures, and evaluation methods, limiting the ability to determine which respite models are most effective, for whom they work, and under what circumstances they produce meaningful benefit. This Policy & Practice Review argues that advancing the science of “breaks that benefit” requires a shared measurement framework grounded in standardized common data elements. We examine the current challenges posed by fragmented measurement and describe the development of a theory-informed framework based on the Value of Respite Model with recommended common data elements developed by the ARCH Committee for Advancement of Respite Research. The implications for research, program evaluation, policy, and international collaboration across diverse health and social care systems are discussed and actionable recommendations are provided for researchers, evaluators, respite programs, funders, policymakers, international partners, and family caregivers. Establishing a shared measurement framework will strengthen the rigor and comparability of respite research, facilitate international collaboration and shared learning, inform policy and investment decisions, and ultimately improve access to equitable, effective, and sustainable “breaks that benefit” family caregivers worldwide. This review is a “call to action” for adoption of a shared framework and common data elements to measure and improve “breaks that benefit” family caregivers.
Related
- Healthcare workers and caregivers’ perspectives on access to cancer screening for people with intellectual disabilities as revealed by system dynamics and group model building
- Building capacity in health systems with and for caregivers: a scoping review
- Building capacity in health systems with and for caregivers: A photovoice protocol
- From publication to practice: Building a global home for interventional epidemiology and public health
- What is an ideal mHealth for post-discharge home care of CHD: perspectives from primary caregivers, healthcare professionals, and project technical consultants: a qualitative research study
BibTeX
@article{whitmore2026building,
title = {{Building a shared measurement framework for “breaks that benefit” family caregivers: a call to action for respite research, policy, and practice}},
author = {Kim E. Whitmore and Sarah Swanson},
journal = {Frontiers in Health Services},
year = {2026},
month = nov,
doi = {10.3389/frhs.2026.1779414},
url = {https://doi.org/10.3389/frhs.2026.1779414},
note = {CC BY},
}
RIS
TY - JOUR
TI - Building a shared measurement framework for “breaks that benefit” family caregivers: a call to action for respite research, policy, and practice
AU - Kim E. Whitmore
AU - Sarah Swanson
PY - 2026
DA - 2026/11/05
JO - Frontiers in Health Services
DO - 10.3389/frhs.2026.1779414
UR - https://doi.org/10.3389/frhs.2026.1779414
AB - Family caregivers—individuals who serve in unpaid, informal caregiving roles—are essential to health and social care systems worldwide, yet sustaining their ability to provide care requires access to meaningful respite, often referred to internationally as “short breaks.” Although respite is widely recognized as a critical support, the evidence base remains fragmented because studies use inconsistent terminology, outcome measures, and evaluation methods, limiting the ability to determine which respite models are most effective, for whom they work, and under what circumstances they produce meaningful benefit. This Policy & Practice Review argues that advancing the science of “breaks that benefit” requires a shared measurement framework grounded in standardized common data elements. We examine the current challenges posed by fragmented measurement and describe the development of a theory-informed framework based on the Value of Respite Model with recommended common data elements developed by the ARCH Committee for Advancement of Respite Research. The implications for research, program evaluation, policy, and international collaboration across diverse health and social care systems are discussed and actionable recommendations are provided for researchers, evaluators, respite programs, funders, policymakers, international partners, and family caregivers. Establishing a shared measurement framework will strengthen the rigor and comparability of respite research, facilitate international collaboration and shared learning, inform policy and investment decisions, and ultimately improve access to equitable, effective, and sustainable “breaks that benefit” family caregivers worldwide. This review is a “call to action” for adoption of a shared framework and common data elements to measure and improve “breaks that benefit” family caregivers.
SN - 2813-0146
ER -