ARCH Respite Research Initiative

ARCH has advanced efforts to enhance the respite evidence base to assist with sustainability, promote continuous quality improvement, and help grantees and others translate research into best practices. Through the Respite Research Initiative, ARCH is working to collect, synthesize, disseminate, and stimulate research in the field of respite and family caregiver support.

The ARCH Goals for Advancing Respite Research include:

Improve access to and quality of respite services
Identify aspects of respite services and models that make them exemplary
Evaluate and replicate promising respite services
Translate research findings into practice and policy
Identify additional possibilities (e.g., funding opportunities for research)

The Expert Panel on Respite Research, convened by ARCH in collaboration with the Administration for Community Living from 2013-2015, was key to helping advance ARCH's mission to build an evidence base for respite. The final report of the Expert Panel, a Research Agenda for Respite Care: Deliberations of an Expert Panel of Researchers, Advocates and Funders, included recommendations and a research framework for conducting focused research on respite care.

To help implement the Expert Panel's research agenda, ARCH built a Respite Research Consortium to link interested researchers and funders to engage in respite research that follows the Expert Panel's research framework. If you are interested in keeping current with respite research, please subscribe to the Respite Research Consortium Updates.

A virtual Respite Research Summit was held on September 29 and 30, 2020, to evaluate the progress made by ARCH and the Consortium and to identify next steps. Interested researchers, providers and advocates are encouraged to subscribe to Respite Research Consortium Updates to follow its progress. Following the Summit, a summary report with findings, Advancing Respite Research, was published.

ARCH also collaborates with the BREAK (Building Respite Evidence and Knowledge) Exchange, which is an international group of researchers, respite providers, agencies, and individuals who are committed to building a culture of evidence-based respite care. With this collaboration, ARCH will be linking respite services we identify as Innovative and Exemplary through a rigorous national application and selection process to interested researchers worldwide.

Committee for Advancement of Respite Research

In September 2020, ARCH announced the formation of the ARCH Committee for Advancement of Respite Research (CARR) that is charged with advising ARCH and identifying additional goals for respite research. This initiative includes: examination of how to improve access to and quality of respite services; identification of aspects of respite services and models that make them exemplary; encouragement of evaluation and replication of promising services; and translation of research findings into practice. Given the effects of COVID-19 on respite service delivery, another focus of the Committee is to identify methods for evaluating the impact of alternative respite options that have been developed to support family caregivers during the pandemic, and how these may be translated into more flexible respite options for families in the future.

On October 28, 29, and 30, 2024, from 1:00 pm to 4:30 pm ET each afternoon, the CARR will host its capstone event, the 2024 virtual Respite Research Summit. During the Summit, we will explore the CARR initiatives undertaken over the last several years, including the development of a Framework for Measuring the Value of Respite, recommendations for Common Data Elements in Future Respite Research, and tools for Ensuring Cultural and Linguistic Competence in Respite Research. We will highlight cutting-edge national, state and local respite and caregiving research and evaluations that align with and elevate this work, and will feature real-life examples of research-ready innovative and exemplary respite services from around the country. Read more and register for the event.

CARR Committee Members

Joseph Caldwell, PhD
Director, Community Living Policy Center
Lurie Institute for Disability Policy
Brandeis University
Waltham, MA

Thomas V. Caprio, MD, MPH, MS
Professor of Medicine/Geriatrics,
Psychiatry, Dentistry, Clinical Nursing, &
Public Health Sciences
University of Rochester Medical Center
Rochester, NY

Joseph E. Gaugler, PhD
Robert L. Kane Endowed Chair in Long-Term Care and Aging & Professor
Director, Center for Healthy Aging & Innovation
Division of Health Policy and Management
School of Public Health, University of Minnesota
Minneapolis, MN

Ken Genewick
Vice President of Programs
Health Foundation for Western and Central New York
Buffalo, NY

Tamar Heller, PhD
Distinguished Professor, Department Head
Department of Disability and Human Development University of Illinois at Chicago
University of Illinois at Chicago
Chicago, IL

Lauren J. Parker, PhD, MPH
Associate Scientist
Department of Health, Behavior and Society
Johns Hopkins Bloomberg School of Public Health
Baltimore, MD

Susan Peschin, MHS
President and CEO
Alliance for Aging Research
Washington, DC

Cordelia Robinson Rosenberg, PhD, RN
Professor Emerita
University of Colorado School of Medicine
Aurora, CO

Rani E. Snyder
Vice President, Program
The John A. Hartford Foundation
New York, NY

Sarah A. Sobotka, MD MSCP
Associate Professor of Pediatrics
Department of Pediatrics
Section of Developmental and Behavioral Pediatrics
The University of Chicago
Chicago, IL

Sarah Swanson, MPH
Assistant Professor & Family Support Coordinator
UNMC Munroe-Meyer Institute
University of Nebraska Medical Center
Omaha, NE

Rebecca L. Utz, PhD
Associate Dean of Research and Graduate Education
Professor, Department of Sociology
College of Social and Behavioral Science
University of Utah
Salt Lake City, UT

Kim E. Whitmore, PhD, RN, CPN
Assistant Professor
College of Nursing
Marquette University
Milwaukee, WI

Overview and Purpose

The purpose of the Committee for Advancement of Respite Research (CARR) is to advise ARCH on the execution of its respite research initiative and help advance a respite research agenda that supports activities and innovations to develop an evidence base for respite care and related services. The CARR is comprised of former members of the ARCH Expert Panel on Respite Research, research scholars and evaluators, and foundation representatives.

ARCH will convene CARR to review progress in implementing earlier research recommendations, monitor ongoing research activities and findings, and explore new translational and implementation research needs, including testing of new respite models and informal respite supports. CARR will consider the research findings identified during the virtual Respite Research Summit held in September 2020, review pertinent recommendations from the Raise Family Caregiving (RFC) and the Supporting Grandparents Raising Grandchildren (SGRG) Advisory Councils that might inform future research, develop priorities for new research recommendations, establish a new research agenda, and strategize to implement these recommendations.

At the conclusion of this work, ARCH and CARR will convene a Respite Research Summit to provide a status update on respite research and implementation of research recommendations to date, discuss practice and policy implications of the findings, engage with a panel of Innovative and Exemplary Respite services providers for model studies, and solicit guidance and interest from funders on advancing the agenda.

National Presentations

Advancing Respite by Building Bridges among Respite Researchers
Assistant Professor, Marquette University
Research Consultant, ARCH

Dr. Kim Whitmore, facilitator of the ARCH Committee for Advancement of Respite Research (CARR), presented virtually at the 2nd Conference on Caregiving Research, Building Bridges: Advancing Family Caregiving Research Across the Lifespan, hosted by the National Rehabilitation Research and Training Center on Family Support at the University of Pittsburgh. Dr. Whitmore provided an overview of ARCH's Respite Research Initiative and discussed the role of CARR in advancing an evidence-base for respite in her presentation Advancing Respite by Building Bridges among Respite Researchers.

Presentation Slides

Watch her presentation.

View the Conference Abstracts in the full Conference Program.

Workgroups

At the January 2022 meeting, the CARR reviewed its Overview and Purpose, and formed three workgroups that met through 2022 to identify and undertake tasks to advance a respite research agenda:

Work Group 1: Define and measure the value (cost-effectiveness) of respite

Work Group 2: Recommend common data elements (CDE) for respite-related research

Work Group 3: Expand culturally appropriate research with diverse populations

The workgroups are working on these products:

White Paper on Measuring the Value of Respite Care
The Value of Respite Model - a Multi-level, Life Course Perspective
White Paper on Recommending Common Data Elements for Respite Research
Environmental Scan - Resources to expand culturally and linguistically competent research
Assisting with the development of a Research Guide for conducting culturally and linguistically competent respite research in collaboration with the Georgetown National Center for Cultural Competence

This table, Alignment of CARR Work Groups to Key Recommendations, shows the alignment of the CARR Work Groups to key recommendations from various national initiatives. Understanding the impact of the COVID-19 on respite is a cross-cutting issue that all CARR Work Groups are considering. Family caregivers must be recognized, engaged, and supported as key partners in this work. Additionally, strong advocacy for increased funding for respite research across the lifespan is critical.

Full Committee Meeting Documents, June 4, 2024

Full Committee Meeting Documents, March 5, 2024

Full Committee Meeting Documents, October 23, 2023

Full Committee Meeting Documents, June 22, 2023

Agenda and Meeting Notes

Presentation Slides

Alignment of research related actions in the 2022 National Strategy to Support Family Caregivers with the ARCH Committee for Advancement of Respite Research (CARR)

2022 National Strategy/CARR Crosswalk

This document presents a summary of relevant content within each of the 4 main documents that are part of the 2022 National Strategy to Support Family Caregivers aligned with the following ARCH Committee for Advancement of Respite Research (CARR) Work Groups: 1) Define and Measure the Value of Respite; 2) Recommend common data elements (CDE) for respite-related research; and 3) Expand culturally appropriate research with historically underrepresented populations.

Full Committee Meeting Documents - January 12, 2023

Full Committee Meeting Documents - January 21, 2022

Full Committee Meeting Documents - Inaugural Meeting, May 5, 2021

Response to Research Actions in the National Strategy to Support Family Caregivers

The 2022 National Strategy to Support Family Caregivers was created to support family caregivers caring for those of all ages, from youth to grandparents, and regardless of where they live or what caregiving looks like for them and their loved ones. The strategy was developed jointly by the advisory councils created by the RAISE Family Caregiving Act and the Supporting Grandparents Raising Grandchildren Act, with extensive input from the public, including family caregivers and the people they support.

The Administration for Community Living requested public comments to be used to help the Advisory Councils identify priorities for future updates of the Strategy.

In response to this request, Dr. Kim Whitmore, facilitator of the ARCH Committee for Advancement of Respite Research prepared a summary of relevant content related to respite research and data collection for the CARR within each of the 4 main documents that are part of the 2022 National Strategy to Support Family Caregivers.

ARCH prepared comments on the research relevant content in the National Strategy, shared them with members of the CARR, and submitted them in response to ACL's request for input.

Alignment of research related actions in the 2022 National Strategy to Support Family Caregivers with the ARCH Committee for Advancement of Respite Research (CARR)

2022 National Strategy/CARR Crosswalk

This document presents a summary of relevant content within each of the 4 main documents that are part of the 2022 National Strategy to Support Family Caregivers aligned with the following ARCH Committee for Advancement of Respite Research (CARR) Work Groups: 1) Define and Measure the Value of Respite; 2) Recoomend common data elements (CDE) for respite-related research; and 3) Expand culturally appropriate research with historically underrepresented populations.

Products - Environmental Scans, White Papers

Environmental Scan

Resources to help expand culturally and linguistically competent respite research

Prepared for the ARCH Committee for Advancement of Respite Research

An environmental scan was conducted by the ARCH Committee for Advancement of Respite Research (CARR) to identify resources to help expand culturally and linguistically competent and responsive research with diverse populations. The scan includes a list of resources, individuals and organizations, articles, and webinars that were identified to help researchers who are interested in learning more about how to engage in culturally appropriate research with diverse, marginalized and under-resourced groups.

We will continue to update this list as new resources are identified. If you are aware of any additional resources that should be considered, please let ARCH know.

View & Download

Measuring the Value of Respite

A White Paper by the ARCH Committee for Advancement of Respite Research (CARR)

Purpose
The purpose of this white paper is to provide an in-depth description of the current challenges related to measuring the economic value of respite and to offer a new framework for research and evaluation. View the Model

Key Points
§ There is an urgent need to identify, expand, and develop evidence-based and evidence-informed respite that improves caregiver outcomes.
§ Current research and evaluation methods do not adequately measure the economic value of respite.
§ Caregivers need respite and accrue beneficial effects from respite, even if providing respite does not save money.

Recommendations

The White Paper includes a set of key recommendations from the CARR related to measuring the value of respite care.

View & Download the White Paper

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