2020 ARCH Annotated Bibliography

Participant Discussion Guides

1. Roundtable Discussion Guide Group 1 OUTCOMES

2. Roundtable Discussion Guide Group 2 COST-BENEFITS

3. Roundtable Discussion Guide Group 3 SYSTEMS

4. Roundtable Discussion Guide Group 4 PROVIDERS

The ARCH Respite Research Summit will be held virtually.  To ensure meaningful engagement of participants, advanced registration is required and registration will be limited. The event is by invitation only. If you are interested and did not receive an invitation, please This email address is being protected from spambots. You need JavaScript enabled to view it. for more information.

In 2015, the ARCH National Respite Network and Resource Center released recommendations for conducting focused research on respite care in a final report from the ARCH Expert Panel on Respite Research, Research Agenda for Respite Care: Deliberations of an Expert Panel of Researchers, Advocates and Funders.  

Since then, ARCH has brought together researchers and funders in a Respite Research Consortium to help implement the Panel's research recommendations to strengthen the evidence base for respite.  Building upon their work, ARCH is convening a virtual Respite Research Summit for researchers in the ARCH Research Consortium, members of the Expert Panel on Respite Research, international and U.S. researchers, funders, respite providers and services, advocates and others who are interested in helping to advance a respite research agenda and strengthen respite services. 

Read more about the Expert Panel and the Respite Research Consortium.

The objectives of the Summit are to:

1. Provide an overview of the current status of respite and related research;

2. Highlight respite and promising practice-based research with reference to the Expert Panel research framework;

3. Review progress made in implementing the Expert Panel's six recommendations; and

4. Identify gaps in and barriers to respite research, the translation of research into practice, and steps forward to address these.

ARCH wishes to thank The John A. Hartford Foundation and the Wareheim Foundation for their generous support. 

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.

Summit Agenda

DAY 1 - September 29

1:00 - 1:30 PM ET

Welcome

Jill Kagan, ARCH National Respite Network and Resource Center

Welcome slides

Rani E Snyder, MPA, Vice President, Program, The John A. Hartford Foundation

PPT Presentation

Lori Stalbaum, Adminstration for Community Living, Administration of Aging, U.S. Department of Health and Human Services

1:30 - 1:45

Background on the ARCH Expert Panel on Respite Research and the Final Report, Research Agenda for Respite Care:  Deliberations of an Expert Panel of Researchers, Advocates and Funders

Ray Kirk, PhD, ARCH National Respite Network and Resource Center

PPT Presentation

1:45 - 2:00

Focus on Equity and Diversity in Respite Research

Kim Whitmore, PhD, RN, University of Wisconsin - Madison, School of Nursing

2:00 - 2:45

Aligning Research Agendas with Research Recommendations

Moderated by Jill Kagan, ARCH

• Research Agenda of the National Adult Day Services Association

Bill Zagorski, Chair and Research Committee Chair, National Adult Day Services Association

PPT Presentation

NADSA Research Positioning Statement and 5 Year Plan: August 2019

NADSA Research Statement, Domain Map, September 2019

• Scoping review of the evidence base on short breaks in the United Kingdom

Emma Miller, PhD, Senior Research Fellow, School of Social Work and Social Policy, University of Strathclyde, Glasgow, Scotland

PPT Presentation

Short Breaks for Carers: A scoping review, September 2019

• Break Exchange

Kim Whitmore, PhD, RN, University of WI - Madison, School of Nursing and ISBA Confernce Chair

PPT Presentation

3:00 - 4:15

Research on Respite Outcomes and Access

Moderated by Casandra Firman, MS, ARCH National Respite Network and Resource Center

PPT Presentation

Sarah A. Sobotka, MD MSCP, Assistant Professor of Pediatrics, Section of Developmental and Behavioral Pediatrics, Associate Program Director of Developmental and Behavioral Pediatrics Fellowship Training Program, Medical Director of Comer Outpatient Developmental and Behavioral Pediatric Programs, The University of Chicago

PPT Presentation

Unmet Respite Needs of Children with Medical Technogogy Dependence
Abstract

4:15 - 5:00

Reactor Panel and Group Discussion

Facilitated by Kim Whitmore, PhD, RN

Joseph Caldwell, PhD, Senior Scientist and Director, Community Living Policy Center, Lurie Institute for Disability Policy, Brandeis University

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

Cordelia Robinson Rosenberg, PhD, RN, Professor Pediatrics and Psychiatry, University of Colorado School of Medicine 

DAY 2 - September 30

1:00 - 1:15

Welcome, Recap and Agenda for the Day

Kim Whitmore, PhD, RN, University of Wisconsin - Madison, School of Nursing

1:15 - 2:00 

Using the Expert Panel Framework

Introduction by Ray Kirk, PhD, ARCH

Tiffany Washington, PhD, John A. Hartford Geriatric Social Work Scholar, Associate Professor, University of Georgia School of Social Work

PPT Presentation

2:00 - 3:00

Practice Research and Evaluation

Moderated by Casandra Firman, MS, ARCH

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

PPT Presentation

Sarah Swanson, MPH, Assistant Professor, Community and Family Resource Specialist, Munroe-Meyer Institute, University of Nebraska Medical Center

PPT Presentation

Nebraska Lifespan Respite Network: Producing Positive Outcomes for Families 2015-2017 

Susan Jenkins, PhD, Director, Office of Performance and Evaluation, Center for Policy and Evaluation, Administration for Community Living, U.S. Department of Health and Human Services 

PPT Presentation

3:15 - 4:15 

Roundtable Discussions 

Summit participants will break into groups to address Expert Panel Recommendations: 1)  Individual, family and societal outcomes research; 2) cost-benefits and cost-effectiveness research; 3) systems change research to improve access; and 4) competency and training needs of providers.

Read more about Expert Panel Key Recommendations

Facilitated by  Kim Whitmore, University of WI - Madison, School of Nursing; Casandra Firman, MS, Susan Janko Summers, PhD, and Ray Kirk, PhD, ARCH

4:15 - 4:45

Roundtable Reports and Recommendations for Future Research

Facilitated by Kim Whitmore, PhD, RN

Joseph Caldwell, PhD, Senior Scientist and Director, Community Living Policy Center, Lurie Institute for Disability Policy, Brandeis University

Ray Kirk, PhD, ARCH National Respite Network and Resource Center

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

Cordelia Robinson Rosenberg, PhD, RN, Professor Pediatrics and Psychiatry, University of Colorado School of Medicine 

4:45 - 5:00

Wrap-Up and Next Steps

Ray Kirk, PhD

Questions?

Contact This email address is being protected from spambots. You need JavaScript enabled to view it.

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