Strengthening the Evidence for Respite – Findings and Recommendations from the Respite Research Summit, October 28-30, 2024

The Respite Research Summit hosted by the ARCH National Respite Network and Resource Center’s Lifespan Respite Technical Assistance Center (TARC) and the Committee for Advancement of Respite Research (CARR), and supported by the Administration for Community Living, was devoted to augmenting the research and evaluation capacity of community-based providers and state- and federal-level organizations with the goal of ensuring that respite care and caregiver1 services are of high quality, meaningful for family caregivers, replicable, and informed by evidence.

This document provides an overview of the sessions presented during the 3-day Summit with a focus on the application of the Framework for Measuring the Value of Respite and
Recommended Common Data Elements for Respite Research developed by the CARR. Sessions highlighted cutting-edge national, state, and local respite and caregiving research and evaluations that align with and elevate this work including examples of research-ready innovative and exemplary respite services from around the country.

This report summarizes recommendations and key themes from the deliberations of Summit participants. The emergent themes include the importance of:

• Caregiver-Centered Approaches. Placing caregivers at the core of respite research and program design should be a basic tenet of respite research.
• Advancement of Measurement and Evaluation. A need to improve the ways respite is measured should be a priority.
• Building Research Capacity in Respite Programs. Building research-ready respite programs requires practical support in designing and implementing program evaluation plans and in collecting, using, interpreting, and sharing standardized data.
• Community and Caregiver Engagement. Meaningful engagement with family caregivers consistently identified as both vital and under-resourced.
• Addressing Systemic and Structural Barriers. Ongoing administrative barriers, funding limitations, workforce shortages, and institutional challenges hinder respite service delivery and research efforts.