Caring for Caregivers and Patients: Revisiting the Research and Clinical Priorities for Informal Cancer Caregiving

Event Type:
May 4–5, 2015


The purpose of this meeting is to convene stakeholders to share expertise about the state of the science of informal cancer caregiving, identify gaps in the science from the perspectives of patients, caregivers, healthcare providers, and researchers, and determine what is unique about caregiving in cancer. We discussed current opportunities and challenges to work in this area, and delineate how best to design new and disseminate effective interventions to reduce the burden of cancer caregiving. A paper reviewing the meeting proceedings and providing recommendations is currently under development.


  • Review the prevalence, epidemiology, and overall burden of informal cancer caregiving.   Compare and contrast the challenges to informal caregiving in the cancer setting versus other chronic disease settings.
  • Review the state of the science of informal cancer caregiving interventions on patient, caregiver, and dyadic outcomes. Discuss challenges in both conducting intervention research and scaling up interventions, as well as strategies for improved recruitment and retention of caregivers in research.
  • Consider opportunities and challenges present in models of integrating informal caregivers into care. Discuss what may be learned from other chronic disease models vs. what is unique to cancer care.
  • Discuss the role and implications of technology in informal cancer caregiving research. Examine tools to assess relationship dynamics, caregiver burden and health outcomes and novel delivery systems/platforms for intervention.

Workshop Agenda

May 4, 2015, beginning at 1:00pm

Welcome and Introduction

Erin Kent,
National Cancer Institute
Marguerite Littleton Kearney,
National Institute of Nursing Research


Session 1: The prevalence and burden of informal cancer caregiving
Session Leads: Richard Schulz, Julia Rowland

Background and definition of informal cancer caregiving

Julia Rowland,
National Cancer Institute


Lessons from the field: the voice of the caregiver

Adam Kuchinski


Defining and Counting Family Caregivers of Older Adults

Richard Schulz,
University of Pittsburgh

1:30-1:45 pm

State of the Science: Research with Family Caregivers of Cancer Patients

Laurel Northouse,
University of Michigan

1:45-2:05 pm

An overview of informal cancer caregiving research funded by NCI and NINR

Karen Huss,
National Institute of Nursing Research
Erin Kent,
National Cancer Institute

2:05-2:20 pm

Discussion Session 1: The Prevalence and Burden of Informal Cancer Caregiving

Youngmee Kim,
University of Miami, Coral Gables

2:20-3:10 pm




Session 2: Interventions to target cancer patients, caregivers and dyads
Session Leads: Laurel Northouse, Ann O’Mara, Karen Huss

Introduction to Session

Ann O’Mara,
National Cancer Institute

Karen Huss,
National Institute of Nursing Research


Caregiving: Impact on Patient Outcomes

Barbara Given,
Michigan State University


Overview of Caregiving Interventions in the Context of the Caregiver

Paula Sherwood,
University of Pittsburgh


Dyadic Outcomes in Oncology Research: an Analysis of RCTs

Fran Lewis,
University of Washington

3:55-4:10 pm

Discussion Session 2:
Dyadic Interventions in Cancer: Targeting Patients and Caregivers

Hoda Badr,
Mount Sinai School of Medicine

Mark Laudenslager,
University of Colorado

4:10-5:00 pm

Summary and Synthesis of Day 1

Nonniekaye Shelburne,
National Cancer Institute

5:00-5:15 pm

May 5, 2015

Introduction to Day 2

Kristin Litzelman,
National Cancer Institute


Session 3: Integrating caregivers into formal health systems in cancer care
Session Leads: Nonniekaye Shelburne, Kristin Litzelman

Lessons from the field: the voice of the caregiver

Diane Zipursky Quale


Introduction to session: Sustainability of informal caregiving interventions in health systems: barriers and opportunities

Joan Griffin,
Mayo Clinic


The Center for the Study of Cancer Caregivers
MSKCC: A hospital-based informal cancer caregiver clinic

Allison Applebaum,
Memorial Sloan Kettering Cancer Center


Integrating Informal Caregiver Interventions into Practice:Considerations for Home and Hospice Care

George Demiris,
University of Washington


Discussion Session 3:  Integrating informal cancer caregivers into cancer care

Sharon Manne,
Rutgers University





Session 4: The role of technology in supporting cancer caregiving
Session Leads: Wen-Ying Sylvia Chou, Erin Kent

The role of new media and technologies in support of cancer caregiving

Wen-Ying Sylvia Chou,
National Cancer Institute


Use of automated symptom-reporting systems for cancer survivors and caregivers

Kathi Mooney,
University of Utah


Use and creation of online communities and their adaptation for informal cancer caregiving

Robert Kraut,
Carnegie Mellon University


Discussion Session 4: The role of technology in supporting informal cancer caregiving

Catherine Mosher,
Indiana University


Summary and synthesis

Erin Kent,
National Cancer Institute


Closing Remarks and Next Steps

Julia Rowland,
National Cancer Institute
Karen Huss,
National Institute of Nursing Research



Workshop Planning Committee

Planning Co-Chairs

Erin Kent, PhD, MS, National Cancer Institute
Karen Huss, PhD, National Institute of Nursing Research
Julia Rowland, PhD, National Cancer Institute

Planning Committee

Laurel Northouse Exit Disclaimer, PhD, RN, FAAN, University of Michigan
Richard Schulz Exit Disclaimer, PhD, University of Pittsburgh
Wen-Ying Sylvia Chou, PhD, MPH, National Cancer Institute
Kristin Litzelman, PhD, National Cancer Institute
Ann O’Mara, PhD, RN, MPH, National Cancer Institute
Nonniekaye Shelburne Exit Disclaimer, CRNP, MS, AOCN, National Cancer Institute



Last Updated
September 24, 2020