Family Caregiving for
People with Cancer and
Other Serious Illnesses
_____
Laurene Graig and Joe Alper,
Rapporteurs
Roundtable on Quality Care for
People with Serious Illness
Forum on Aging, Disability, and
Independence
National Cancer Policy Forum
Board on Health Care Services
Health and Medicine Division
Proceedings of a Workshop
THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001
This activity was supported by Contract No. 200-2011-38807 (Task Order No. 75D30120F00089), Contract No. HHSN263201800029I (Task Order No. HHSN26300008), Contract No. HHSN263201800029I (Task Order No. 75N98019F00848), and Contract No. HHSP233201400020B (Task Order No. 75P00120F37104) between the National Academy of Sciences and the Centers for Disease Control and Prevention and the National Institutes of Health/National Cancer Institute, National Institutes of Health/National Institute on Aging, and National Institute on Disability, Independent Living, Rehabilitation Research, respectively, and by AARP, Administration for Community Living, American Academy of Hospice and Palliative Medicine, American Association for Cancer Research, American Cancer Society, American College of Radiology, American Geriatrics Society, American Society of Clinical Oncology, Ascension Health, Association of American Cancer Institutes, Association of Community Cancer Centers, Association of Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross Blue Shield Association, Blue Cross Blue Shield of MA, Bristol Myers Squibb, California State University Shiley Haynes Institute for Palliative Care, Cambia Health Foundation, Cancer Support Community, Catholic Health Association, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced Care, Consumer Technology Association Foundation, Flatiron Health, Gerontological Society of America, The Greenwall Foundation, Hospice and Palliative Nurses Association, John A. Hartford Foundation, Kaiser Permanente, Leading Age, Merck, National Coalition for Hospice and Palliative Care, National Comprehensive Cancer Network, National Hospice and Palliative Care Organization, Independent Living, and Rehabilitation Research, National Palliative Care Research Center, National Patient Advocate Foundation, New York Academy of Medicine, Novartis Oncology, Oncology Nursing Society, Partners in Health, Patient-Centered Outcomes Research Institute, Pfizer Inc, PHI, Sanofi, SCAN Foundation, Society for Immunotherapy for Cancer, and USC Leonard D. Schaeffer Center for Health Policy & Economics. Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project.
International Standard Book Number-13: 978-0-309-69391-2
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Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2023. Family caregiving for people with cancer and other serious illnesses: Proceedings of a workshop. Washington, DC: The National Academies Press. https://doi.org/10.17226/26721.
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PLANNING COMMITTEE FOR A WORKSHOP ON FAMILY CAREGIVING FOR PEOPLE WITH CANCER AND OTHER SERIOUS ILLNESSES1
GRACE CAMPBELL (Co-Chair), Assistant Professor, Duquesne University School of Nursing; Director of Quality and System Integration, Family CARE Center Gynecologic Oncology Program, Hillman Cancer Center at UPMC Magee
RANDALL A. OYER (Co-Chair), Clinical Professor of Medicine, Perelman School of Medicine; Executive Medical Director, Ann B. Barshinger Cancer Institute; Medical Director, Oncology and the Cancer Risk Evaluation Program, Penn Medicine Lancaster General Health
ALLISON J. APPLEBAUM, Associate Attending Psychologist, Director of the Caregivers Clinic, Memorial Sloan Kettering Cancer Center; Assistant Professor of Psychology in Psychiatry, Weill Cornell Medicine
JENNIFER MOORE BALLENTINE, Executive Director, California State University Shiley Haynes Institute for Palliative Care
CATHY J. BRADLEY, David F. and Margaret Turley Grohne Endowed Chair for Cancer Prevention and Control Research and Professor and Associate Dean for Research, Colorado School of Public Health; Bunn Chair of Cancer Research, Deputy Director, University of Colorado Comprehensive Cancer Center
JULIE BYNUM, Margaret Terpenning Professor of Medicine, Division of Geriatric Medicine, University of Michigan
JANE CARMODY, Senior Program Officer, The John A. Hartford Foundation
SARA DAMIANO, National Director of Palliative Care, Ascension
PAMELA S. HINDS, Executive Director, Department of Nursing Science, Professional Practice & Quality, Research Integrity Officer, Children’s National Hospital; Professor of Pediatrics, School of Medicine and Health Sciences, George Washington University
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s planning committees are solely responsible for organizing the workshop, identifying topics, and choosing speakers. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
RANDY A. JONES, Professor and Associate Dean, Partner Development and Engagement, University of Virginia School of Nursing; Assistant Director of Outreach, Recruitment, and Engagement, University of Virginia Comprehensive Cancer Center
REBECCA KIRCH, Executive Vice President of Healthcare Quality and Value, National Patient Advocate Foundation
AMY MELNICK, Executive Director, National Coalition for Hospice and Palliative Care
CLYDE W. ODEN, JR., Assistant Director, Alameda County Care Alliance
Project Staff
LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness
SHARYL NASS, Senior Director, Board on Health Care Services, and Co-Director, National Cancer Policy Forum
TRACY LUSTIG, Director, Forum on Aging, Disability, and Independence
LORI BENJAMIN BRENIG, Research Associate
RACHEL AUSTIN, Senior Program Assistant (through June 2022)
Consultant
JOE ALPER, Consulting Writer
ROUNDTABLE ON QUALITY CARE FOR PEOPLE WITH SERIOUS ILLNESS1
PEGGY MAGUIRE (Chair), President and Board Chair, Cambria Health Foundation
JAMES A. TULSKY (Co-Chair) (through May 2022), Chair, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute; Chief, Division of Palliative Medicine, Brigham and Women’s Hospital; Professor of Medicine and Co-Director, Center for Palliative Care, Harvard Medical School
JENNIFER MOORE BALLENTINE, Executive Director, California State University Shiley Haynes Institute for Palliative Care
KAREN BULLOCK, Professor and Head of the School of Social Work, North Carolina State University (representing Social Work Hospice and Palliative Care Network)
GRACE B. CAMPBELL, Assistant Professor, Duquesne University School of Nursing; Director of Quality and System Integration, Family CARE Center Gynecologic Oncology Program, Hillman Cancer Center at UPMC Magee (representing the Association of Rehabilitation Nurses)
JANE CARMODY, Senior Program Officer, The John A. Hartford Foundation
STEVE CLAUSER, Program Director, Improving Healthcare Systems Research Program, Patient-Centered Outcomes Research Institute
SARA DAMIANO, National Director of Palliative Care, Ascension Health
MATTHEW GONZALES, Providence Institute for Human Caring (representing the Catholic Health Association)
ANNA GOSLINE, Senior Director of Strategic Initiatives, BlueCross BlueShield of Massachusetts, Executive Director, Massachusetts Coalition for Serious Illness Care
MICHELLE GROMAN, President and Chief Executive Officer, The Greenwall Foundation
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
DENISE HESS, Director, Supportive Care, The Catholic Health Association of the United States (representing the Association of Professional Chaplains)
PAMELA S. HINDS, Executive Director, Department of Nursing Science, Professional Practice & Quality, Research Integrity Officer, Children’s National Hospital; Professor of Pediatrics, School of Medicine and Health Sciences, George Washington University
HAIDEN HUSKAMP, 30th Anniversary Professor of Health Care Policy, Harvard Medical School
REBECCA A. KIRCH, Executive Vice President of Healthcare Quality and Value, National Patient Advocate Foundation
TOM KOUTSOUMPAS, Co-Founder, Coalition to Transform Advanced Care
SHARI M. LING, Deputy Chief Medical Officer, Centers for Medicare & Medicaid Services
DIANE E. MEIER, Director, Center to Advance Palliative Care
AMY MELNICK, Executive Director, National Coalition for Hospice and Palliative Care
R. SEAN MORRISON, Director, National Palliative Care Research Center, Icahn School of Medicine at Mount Sinai
CAROL PEDEN, Executive Director for Clinical Quality, Blue Cross Blue Shield Association
THOMAS M. PRISELAC, President and Chief Executive Officer, Cedars-Sinai Health System
KITTY PURINGTON, Senior Program Director, National Academy for State Health Policy
JOANNE REIFSNYDER, Executive Vice President, Clinical Operations and Chief Nursing Officer, Genesis Healthcare (representing the Hospice and Palliative Nurses Association)
PHILLIP RODGERS, Professor, Family Medicine and Internal Medicine, and Co-Director, Clinical Palliative Care Program, University of Michigan School of Medicine (representing the American Academy of Hospice and Palliative Medicine)
JUDITH A. SALERNO, President, The New York Academy of Medicine
LEONARD D. SCHAEFFER, Judge Robert Maclay Widney Chair and Professor, University of Southern California
JOSEPH W. SHEGA, Regional Medical Director, VITAS Hospice Care (representing the American Geriatrics Society)
SUSAN ELIZABETH WANG, Regional Lead for Shared Decision-Making and Advance Care Planning, Southern California Permanente Medical Group, Kaiser Permanente
Roundtable on Quality Care for People with Serious Illness Staff
LAURENE GRAIG, Director, Roundtable on Quality Care for People with Serious Illness
SHARYL NASS, Senior Director, Board on Health Care Services, and Co-Director, National Cancer Policy Forum
ARZOO TAYYEB, Finance Business Partner, Board on Health Care Services
FORUM ON AGING, DISABILITY, AND INDEPENDENCE1
STEPHEN EWELL (Co-Chair), Executive Director, Consumer Technology Association Foundation
REBECCA JACKSON STOECKLE (Co-Chair), Senior Vice President, Education Development Center
JAMES C. APPLEBY, Chief Executive Officer, The Gerontological Society of America
JOHN AUERBACH, Director of Intergovernmental and Strategic Affairs, Centers for Disease Control and Prevention
JULIE BYNUM, Margaret Terpenning Professor of Medicine, Division of Geriatric Medicine, University of Michigan
TAMALA DAVID, Associate Professor, Department of Nursing State University of New York College at Brockport; Associate Professor, University of Rochester; Researcher, National Center for Deaf Health Research, University of Rochester Medical Center
GEORGE DEMIRIS, Penn Integrates Knowledge University Professor, Department of Biobehavioral Health Sciences, School of Nursing and Department of Biostatistics, Epidemiology and Informatics, Perelman School of Medicine, University of Pennsylvania
THOMAS E. EDES, Executive Director, Office of Geriatrics and Extended Care Operations, Department of Veterans Affairs
ROBERT ESPINOZA, Vice President of Policy, PHI
DONNA FICK, Elouise Ross Eberly Endowed Professor of Nursing, The Pennsylvania State University College of Nursing; Director, Penn State Center for Geriatric Nursing Excellence
TERRY T. FULMER, President, The John A. Hartford Foundation
KATHY GREENLEE, President and Chief Executive Officer, Greelee Global LLC
ROBERT JARRIN, Senior Director of Government Affairs, Qualcomm Inc.
SUSAN JENKINS, Director, Office of Performance and Evaluation, Administration for Community Living, Department of Health and Human Services
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
MELINDA KELLEY, Director, Office of Legislation, Policy, and International Activities, National Institute on Aging
JANNI LEHRER-STEIN, Retired Attorney and Disability Rights Advocate; Vice Chair, Finance, Democratic National Committee Disability Council; Member, Democratic National Committee Rules Committee
FRANK R. LIN, Director, Cochlear Center for Hearing and Public Health, Professor of Otolaryngology, Medicine, Mental Health, and Epidemiology, Johns Hopkins University
SARITA MOHANTY, President and Chief Executive Officer, The SCAN Foundation
ANNE ORDWAY, Program Specialist, National Institute on Disability, Independent Living, and Rehabilitation Research, Administration for Community Living, Department of Health and Human Services
JON A. SANFORD, Professor, School of Industrial Design, Georgia Tech
KATIE SMITH SLOAN, President and Chief Executive Officer, LeadingAge
BONNELIN SWENOR, Associate Professor, The Johns Hopkins Wilmer Eye Institute; Associate Professor, Department of Epidemiology, The Johns Hopkins Bloomberg School of Public Health
ERWIN TAN, Director of Thought Leadership for Health, AARP
FERNANDO TORRES-GIL, Professor of Social Welfare and Public Policy, University of California, Los Angeles
Forum on Aging, Disability, and Independence Staff
TRACY LUSTIG, Forum Director
SHARYL NASS, Senior Director, Board on Health Care Services, and Co-Director, National Cancer Policy Forum
NATIONAL CANCER POLICY FORUM1
EDWARD J. BENZ, JR. (Chair), President and Chief Executive Officer Emeritus, Dana-Farber Cancer Institute; Richard and Susan Smith Distinguished Professor of Medicine, Genetics, and Pediatrics, Harvard Medical School
PETER C. ADAMSON, Global Head, Oncology Development & Pediatric Innovation, Sanofi
GARNET L. ANDERSON, Senior Vice President and Director, Public Health Sciences Division, Fred Hutchinson Cancer Center; Affiliate Professor, Department of Biostatistics, University of Washington; and Principal Investigator, Clinical Coordinating Center, Women’s Health Initiative
KAREN BASEN-ENGQUIST, Annie Laurie Howard Research Distinguished Professor, Director of the Center for Energy Balance in Cancer Prevention & Survivorship, and Professor of Behavioral Science, The University of Texas MD Anderson Cancer Center
SMITA BHATIA, Director of the Institute for Cancer Outcomes and Survivorship, Gay and Bew White Endowed Chair in Pediatric Oncology, and Professor and Vice Chair of Outcomes for Pediatrics, Department of Pediatrics, School of Medicine, Institute for Cancer Outcomes and Survivorship, The University of Alabama at Birmingham
CHRIS BOSHOFF, Chief Development Officer, Global Product Development, Oncology and Rare Disease, Pfizer Inc.
CATHY J. BRADLEY, David F. and Margaret Turley Grohne Endowed Chair for Cancer Prevention and Control Research and Professor and Associate Dean for Research, Colorado School of Public Health; and Bunn Chair of Cancer Research and Deputy Director, University of Colorado Comprehensive Cancer Center
OTIS W. BRAWLEY, Bloomberg Distinguished Professor, Department of Epidemiology and Oncology, Bloomberg School of Public Health, Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University
___________________
1 The National Academies of Sciences, Engineering, and Medicine’s forums and roundtables do not issue, review, or approve individual documents. The responsibility for the published Proceedings of a Workshop rests with the workshop rapporteurs and the institution.
ROBERT W. CARLSON, Chief Executive Officer, National Comprehensive Cancer Network
CHRISTINA CHAPMAN, Assistant Professor of Radiation Oncology, Baylor College of Medicine; Investigator, Houston VA and Baylor Department of Internal Medicine Center for Innovations in Quality, Effectiveness, and Safety
GWEN DARIEN, Executive Vice President, Patient Advocacy and Engagement, National Patient Advocate Foundation
NANCY E. DAVIDSON, Executive Vice President for Clinical Affairs, Senior Vice President and Professor, Clinical Research Division, Fred Hutchinson Cancer Center; Professor and Head, Division of Medical Oncology, Department of Medicine, University of Washington Raisbeck Endowed Chair for Collaborative Cancer Research
JAMES H. DOROSHOW, Director, Division of Cancer Treatment and Diagnosis, Deputy Director for Clinical and Translational Research, Head, Oxidative Signaling and Molecular Therapeutics Group, National Cancer Institute, National Institutes of Health
NICOLE F. DOWLING, Associate Director for Science, Divison of Cancer Prevention and Control, National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention
SCOT W. EBBINGHAUS, Vice President and Therapeutic Area Head Oncology Clinical Research, Merck Research Laboratories
KOJO S. J. ELENITOBA-JOHNSON, Inaugural Chair of the Department of Pathology and Laboratory Medicine, Memorial Sloan Kettering Cancer Center
STANTON L. GERSON, Dean and Senior Vice President, Medical Affairs, Case Western Reserve University School of Medicine; Acting Director, Case Comprehensive Cancer Center; Asa & Patricia Shiverick-Jance B. Shiverick (Tripp) Professor of Hematological Oncology and Distinguished University Professor; Director, National Center for Regenerative Medicine
JULIE R. GRALOW, Chief Medical Officer, Executive Vice President, American Society of Clinical Oncology
ROY S. HERBST, Ensign Professor of Medicine, Professor of Pharmacology, Chief of Medical Oncology, and Associate Director for Translational Research, Yale Comprehensive Cancer Center, Yale School of Medicine
HEDVIG HRICAK, Chair, Department of Radiology, Memorial Sloan Kettering Cancer Center
CHANITA HUGHES-HALBERT, Vice Chair for Research and Professor, Department of Preventive Medicine, and Associate Director for Cancer Equity, Norris Comprehensive Cancer Center, University of Southern California
ROY A. JENSEN, Professor of Pathology and Laboratory Medicine, William R. Jewell, M.D. Distinguished Masonic Professor of Cancer Research, Director, The University of Kansas Cancer Center, and Director, Kansas Masonic Cancer Research Institute, The University of Kansas Medical Center; Past President, Association of American Cancer Institutes
RANDY A. JONES, Professor and Associate Dean, Partner Development and Engagement, University of Virginia School of Nursing; Assistant Director of Outreach, Recruitment, and Engagement, University of Virginia Comprehensive Cancer Center
BETH Y. KARLAN, Vice Chair, Women’s Health Research, Professor, Department of Obstetrics and Gynecology, and Director, Cancer Population Genetics, Jonsson Comprehensive Cancer Center, David Geffen School of Medicine at UCLA
SAMIR N. KHLEIF, Biomedical Scholar & Professor of Oncology, and Director, Jeannie and Tony Loop Immuno-Oncology Lab, Lombardi Comprehensive Cancer Center, Georgetown University Medical Center; Member, Society for Immunotherapy of Cancer
MIA LEVY, Chief Medical Officer, Foundation Medicine, Inc.
SCOTT M. LIPPMAN, Director, Moores Cancer Center, Distinguished Professor of Medicine, Senior Associate Dean and Associate Vice Chancellor for Cancer Research and Care, and Chugai Pharmaceutical Chair in Cancer, University of California, San Diego
LARISSA NEKHLYUDOV, Professor of Medicine, Harvard Medical School; Internist, Brigham and Women’s Hospital; Clinical Director, Internal Medicine for Cancer Survivors, Dana-Farber Cancer Institute
RANDALL A. OYER, Clinical Professor of Medicine, Perelman School of Medicine; Executive Medical Director, Ann B. Barshinger Cancer Institute, Medical Director, Oncology and the Cancer Risk Evaluation Program, Penn Medicine Lancaster General Health
CLEO A. RYALS, Head of Health Equity and Health Disparities Research, Flatiron Health
RICHARD L. SCHILSKY, Principal Investigator, ASCO TAPUR Study, and Professor Emeritus, University of Chicago
JULIE SCHNEIDER, Associate Director, Research Strategy and Partnership, Oncology Center of Excellence, U.S. Food and Drug Administration
SUSAN M. SCHNEIDER, Associate Professor Emerita, Duke University School of Nursing
LAWRENCE N. SHULMAN, Professor of Medicine, Deputy Director, Clinical Services, and Director, Center for Global Cancer Medicine, Abramson Cancer Center, University of Pennsylvania
HEIDI SMITH, Vice President, Center of Operations and Research Excellence (CORE), U.S. Clinical Development and Medical Affairs Oncology, Novartis Pharmaceuticals
GEORGE J. WEINER, Director, Holden Comprehensive Cancer Center at The University of Iowa, C.E. Block Chair of Cancer Research, and Professor, Departments of Internal Medicine and Pharmaceutical Science Experimental Therapeutics
ROBERT A. WINN, Director, VCU Massey Cancer Center, Senior Associate Dean for Cancer Innovation, Professor of Pulmonary Disease and Critical Care Medicine, and Lipman Chair in Oncology, VCU School of Medicine
ROBIN YABROFF, Scientific Vice President of Health Services Research, American Cancer Society
National Cancer Policy Forum Staff
SHARYL NASS, Co-Director, National Cancer Policy Forum, Senior Director, Board on Health Care Services
ERIN BALOGH, Co-Director, National Cancer Policy Forum
FRANCIS AMANKWAH, Program Officer
RACHEL AUSTIN, Senior Program Assistant (until June 2022)
LORI BENJAMIN BRENIG, Research Associate
TORRIE BROWN, Program Coordinator
CHIDINMA CHUKWURAH, Senior Program Assistant (from August 2022)
JACARI JENNINGS, Senior Program Assistant (from July 2022)
ARZOO TAYYEB, Finance Business Partner
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Reviewers
This Proceedings of a Workshop was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published proceedings as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the charge. The review comments and draft manuscript remain confidential to protect the integrity of the process.
We thank the following individual for her review of this proceedings:
ERIN E. KENT, University of North Carolina at Chapel Hill
Although the reviewer listed above provided many constructive comments and suggestions, she was not asked to endorse the content of the proceedings nor did she see the final draft before its release. The review of this proceedings was overseen by BETTY FERRELL, City of Hope. She was responsible for making certain that an independent examination of this proceedings was carried out in accordance with standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the rapporteurs and the National Academies. We also thank staff member JULIE SCHUCK for reading and providing helpful comments on this manuscript.
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Acknowledgments
The Roundtable on Quality Care for People with Serious Illness, together with the National Cancer Policy Forum and the Forum on Aging, Disability, and Independence express their sincere gratitude to the Planning Committee Co-Chairs Grace Campbell and Randall A. Oyer for their valuable contributions to the development and orchestration of this workshop. We also wish to thank all the members of the planning committee, who collaborated to ensure a workshop complete with informative presentations and rich discussions. Finally, we want to thank the speakers and moderators, who generously shared their expertise and their time with workshop participants.
Support from the many annual sponsors of the Roundtable on Quality Care for People with Serious Illness; Forum on Aging, Disability, and Independence; and the National Cancer Policy Forum is critical to the roundtable and forums’ work.
The sponsors of the Roundtable on Quality Care for People with Serious Illness include the American Academy of Hospice and Palliative Medicine, American Geriatrics Society, Ascension Health, Association of Professional Chaplains, Association of Rehabilitation Nurses, Blue Cross Blue Shield Association, Blue Cross Blue Shield of MA, California State University Shiley Haynes Institute for Palliative Care, Cambia Health Foundation, Catholic Health Association, Cedars-Sinai Health System, Center to Advance Palliative Care, Coalition to Transform Advanced
Care, Greenwall Foundation, John A. Hartford Foundation, Hospice and Palliative Nurses Association, Kaiser Permanente, National Coalition for Hospice and Palliative Care, National Hospice and Palliative Care Organization, National Palliative Care Research Center, National Patient Advocate Foundation, New York Academy of Medicine, Patient-Centered Outcomes Research Institute, and USC Leonard D. Schaeffer Center for Health Policy & Economics.
The federal sponsors of the Forum on Aging, Disability, and Independence include the National Institute on Aging and National Institute on Disability, Independent Living, and Rehabilitation Research. The nonfederal sponsors include AARP, Administration for Community Living, American Geriatrics Society, Consumer Technology Association Foundation, Leading Age, PHI, The Gerontological Society of America, John A. Hartford Foundation, and SCAN Foundation.
The federal sponsors of the National Cancer Policy Forum include the Centers for Disease Control and Prevention and National Cancer Institute/National Institutes of Health. The nonfederal sponsors include American Association for Cancer Research, American Cancer Society, American College of Radiology, American Society of Clinical Oncology, Association of American Cancer Institutes, Association of Community Cancer Centers, Bristol Myers Squibb, Cancer Support Community, Flatiron Health, Merck, National Comprehensive Cancer Network, National Patient Advocate Foundation, Novartis Oncology, Oncology Nursing Society, Partners in Health, Pfizer Inc, Sanofi, and Society for Immunotherapy of Cancer.
Contents
UNDERSTANDING THE NEEDS OF FAMILY CAREGIVERS
PROVIDING EFFECTIVE SUPPORT FOR FAMILY CAREGIVERS
A Dementia-Friendly Program for African American Faith Communities and Families Living with Dementia
A Clinical Service Dedicated to Supporting Cancer Caregivers
Family Caregiving in Indigenous Communities
ACCA’s Advanced Illness Care Program
An Academic-Clinical Partnership to Support Family Caregivers
INTEGRATING FAMILY CAREGIVERS INTO THE HEALTH CARE TEAM
Caregiving for a Loved One with Alzheimer’s Disease
Including Family Caregivers in Patient Health Care Teams
Caregivers as Surrogate Decision Makers for Patients with Serious Illness
Supporting Care Partners with Health Information Technology
RESEARCH CHALLENGES AND OPPORTUNITIES
Translating the Caregiver Experience into Research
The Science of Family Caregiving and its Impact
Moving from Silos to Bridges in Research
Research Challenges and Opportunities with Minoritized Populations
Audience Question and Answer Session
POLICY OPPORTUNITIES TO SUPPORT FAMILY CAREGIVERS
Boxes, Figures, and Table
BOXES
2Core Partnership Activities for Churches That Become Alter Partners
3The IHS: A Snapshot of Caring for People in Indian Country
4Most Frequently Identified Caregiver Needs
FIGURES
1Organization of Memorial Sloan Kettering’s Family Care Program
2Diagram showing how ACCA touches people in different ways
3The GynOnc Family CARE Center’s distress thermometer and problem list to assess caregiver distress
4Supporting care partners with health information technology on a continuum of complexity
5An organizing framework for care interventions
6The heterogeneity of caregiving
TABLE
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Acronyms and Abbreviations
| ACCA | Alameda County Care Alliance |
| ACL | Administration for Community Living |
| ADL | activity of daily living |
| AHIP | association of health insurance providers |
| AICP | Advanced Illness Care Program™ |
| ALS | Amyotrophic lateral sclerosis |
| CARE | Caregiver Advocacy, Research, and Education |
| CDC | Centers for Disease Control and Prevention |
| CII | Caregiver Intensity Index |
| CMS | Centers for Medicare & Medicaid Services |
| IADL | instrumental activity of daily living |
| ICU | intensive care unit |
| IHS | Indian Health Service |
| IRB | institutional review board |
| MCP | meaning-centered psychotherapy |
| NASHP | National Academy of State Health Policy |
| NIH | National Institutes of Health |
| NPAF | National Public Advocate Foundation |
| PCORI | Patient-Centered Outcomes Research Institute |
| PTSD | post-traumatic stress disorder |
| RAISE | Recognize, Assist, Include, Support, and Engage Family Caregivers Act |
| UPMC | University of Pittsburgh Medical Center |
| VA | Veterans Affairs |
