Purpose
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.
Objectives
- 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 | ||
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Welcome and Introduction |
Erin Kent, |
1:00-1:10pm |
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Session 1: The prevalence and burden of informal cancer caregiving |
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Background and definition of informal cancer caregiving |
Julia Rowland, |
1:10-1:20pm |
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Lessons from the field: the voice of the caregiver |
Adam Kuchinski |
1:20-1:30pm |
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Defining and Counting Family Caregivers of Older Adults |
Richard Schulz, |
1:30-1:45 pm |
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State of the Science: Research with Family Caregivers of Cancer Patients |
Laurel Northouse, |
1:45-2:05 pm |
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An overview of informal cancer caregiving research funded by NCI and NINR |
Karen Huss, |
2:05-2:20 pm |
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Discussion Session 1: The Prevalence and Burden of Informal Cancer Caregiving |
Youngmee Kim, |
2:20-3:10 pm |
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Break |
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3:10-3:20pm |
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Session 2: Interventions to target cancer patients, caregivers and dyads |
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Introduction to Session |
Ann O’Mara, |
3:20-3:25pm |
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Caregiving: Impact on Patient Outcomes |
Barbara Given, |
3:25-3:40pm |
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Overview of Caregiving Interventions in the Context of the Caregiver |
Paula Sherwood, |
3:40-3:55pm |
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Dyadic Outcomes in Oncology Research: an Analysis of RCTs |
Fran Lewis, |
3:55-4:10 pm |
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Discussion Session 2: |
Hoda Badr, |
4:10-5:00 pm |
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Summary and Synthesis of Day 1 |
Nonniekaye Shelburne, |
5:00-5:15 pm |
| May 5, 2015 | ||
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Introduction to Day 2 |
Kristin Litzelman, |
8:00-8:10am |
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Session 3: Integrating caregivers into formal health systems in cancer care |
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Lessons from the field: the voice of the caregiver |
Diane Zipursky Quale |
8:10-8:20am |
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Introduction to session: Sustainability of informal caregiving interventions in health systems: barriers and opportunities |
Joan Griffin, |
8:20-8:30am |
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The Center for the Study of Cancer Caregivers |
Allison Applebaum, |
8:30-8:45am |
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Integrating Informal Caregiver Interventions into Practice:Considerations for Home and Hospice Care |
George Demiris, |
8:45-9:00am |
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Discussion Session 3: Integrating informal cancer caregivers into cancer care |
Sharon Manne, |
9:00-9:55am |
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Break |
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9:55-10:05am |
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Session 4: The role of technology in supporting cancer caregiving |
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The role of new media and technologies in support of cancer caregiving |
Wen-Ying Sylvia Chou, |
10:05-10:15am |
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Use of automated symptom-reporting systems for cancer survivors and caregivers |
Kathi Mooney, |
10:15-10:35am |
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Use and creation of online communities and their adaptation for informal cancer caregiving |
Robert Kraut, |
10:35-10:55am |
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Discussion Session 4: The role of technology in supporting informal cancer caregiving |
Catherine Mosher, |
10:55-11:55am |
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Summary and synthesis |
Erin Kent, |
11:55-12:10pm |
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Closing Remarks and Next Steps |
Julia Rowland, |
12:10-12:20pm |
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 
, PhD, RN, FAAN, University of Michigan
Richard Schulz , 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 , CRNP, MS, AOCN, National Cancer Institute
Contact
Erin Kent, PhD, MS, ORB/DCCPS/HDRP/NCI
kentee@mail.nih.gov