Findings from the Respite Research Summit, September 2020

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ARCH is grateful to the John A. Hartford Foundation and the Wareheim Foundation for their generous support of the Respite Research Summit.

This project is supported, in part by grant number 90LT0002, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy.

 Executive Summary

On September 29 and 30, 2020, ARCH convened the virtual Respite Research Summit with more than 130 national and international participants, including researchers, philanthropic foundation representatives, representatives from the Administration on Community Living, policy analysts, advocates, Lifespan Respite grantees and partners, and respite program providers. The Summit was a capstone event to an initiative by the ARCH National Respite Network and Resource Center to advance a respite research agenda developed by an Expert Panel.

The purpose of the Summit was to review and assess the current state of respite research with the goal of advancing a respite research agenda to strengthen respite services. Researchers currently engaged in respite-related research were invited to present their research on respite and caregiving, with specific reference to six recommendations made by an Expert Panel of researchers, advocates and funders convened by ARCH in 2015. 

Two reactor panels contributed summative and interpretive comments on the presentations. Breakout discussion sessions provided an opportunity for Summit participants to discuss issues and ideas for research and mechanisms for continuing to advance the research agenda’s six recommendations. This report presents in detail the findings of studies presented, and summarizes recommendations and key themes from the deliberations of Summit participants. The emergent themes include defining and describing respite; research funding; measures and measurement; culturally appropriate research with hard-to-reach or serve populations; rethinking cost-effectiveness and cost-benefit studies; workforce development and access to research; and utilizing research findings to inform and improve policy and practice.

The recommendations made by both researchers and other Summit participants will be used to advise ARCH on the next phase of advancing respite research. ARCH will convene a Committee for Advancement of Respite Research charged with taking the original work of the Expert Panel and the findings from this Research Summit to help tailor ARCH’s next steps for advancing respite research.