Cancer Caregivers

Edited by Allison J. Applebaum

This textbook is the first comprehensive guide to the state of the science of cancer caregiving
Illustrated with many in-depth case studies describing the psychosocial interventions for caregivers
Delves into the support available to cancer caregivers within their community
Provides insight on legal and ethical questions surrounding informal caregiving

Cancer Caregivers

Edited by Allison J. Applebaum

Description

Informal caregivers - family members, friends, and other loved ones - are an essential, uncompensated and significantly burdened extension of the healthcare team. Rapid advances in cancer care, including new drugs and immunotherapies and more sophisticated diagnostic tools, have markedly improved the ability to medically extend lives and enhance survival. As patients are living longer, with today's shorter hospital stays and shift towards increased outpatient care, however, the demands placed on all caregivers and their needs have substantially increased.

Cancer Caregivers reveals the field of Psycho-Oncology's exploration of the depth of complexities of caregiving experiences and identifies the vast expanses left to be understood. This text describes the characteristics and experiences of cancer caregivers based on their life stage, relationship to the patient, and ethnic group membership, as well as patients' disease and treatment type. It highlights the significant progress in research focused on the development and dissemination of psychosocial interventions for cancer caregivers, and includes in-depth case studies to illustrate their delivery and application. The text also explores the provision of support to caregivers in the community and the legal and ethical concerns faced by caregivers throughout the caregiving process. Cancer Caregivers offers both fundamental and practical information and is the essential resource for all healthcare professionals who work with patients and families facing cancer.

Cancer Caregivers

Edited by Allison J. Applebaum

Acknowledgements
Forward
By Ruth McCorkle
Preface
Section 1 - Describing the Population
(1) Who are Informal Cancer Caregivers?
Erin E. Kent, PhD, Margaret Longacre, PhD, Wen-Ying Sylvia Chou, PhD, and Michelle A. Mollica, PhD
(2) The Burden of Cancer Caregivers
Barbara Given, PhD and Charles Given, PhD
(3) The Unique Experience of Caregivers Based on their Life Stage and Relationship to the Patient
Kristen Litzelman, PhD
(4) Burden among Caregivers of Patients with Unique Sites of Cancer and/or Treatment and Comorbid Psychopathology
Maria Kryzo-Lacomb, PhD, Tamryn Gray, PhD, Margaret Bevans, PhD, Login George, PhD, and Bill Breitbart, MD
(5) Sociocultural Investigation of Cancer Caregiving
Patricia B. Pedreira, BS, Hannah-Rose Mitchell, MPH, Amanda Ting, BS, and Youngmee Kim, PhD
(6) Measurement of Caregiver Burden - State of the Science and Future Directions
Laurie Anderson, MD, Laura C. Polacek, BA, and KimbersonTanco, MD
Section 2 - Addressing the Needs of Cancer Caregivers: Empirically Supported Treatments
(7) Psychoeducational Interventions for Cancer Family Caregivers
J. Nicholas Dionne-Odom, PhD, RN, ACHPN, Marie A. Bakitas, DNSc, APRN, FAAN and Betty Ferrell, PhD, MA, FAAN, FPCN, CHPN
(8) FOCUS: A Psychoeducational Program for Cancer Patients and Their Family Caregivers
Laurel Northouse PhD, RN, FAAN, Clayton Shuman PhD, RN, Moira Visovatti PhD, RN, Bonnie Dockham LMSW, and Marita Titler PhD, RN, FAAN
(9) Cognitive Behavioral Therapy (CBT) for Informal Cancer Caregivers
Jamie M. Jacobs, PhD, Lara Traeger, PhD, Emily A. Walsh, BA, and Joseph A. Greer, PhD
(10) Problem-Solving Based Interventions
Arthur M Nezu, PhD, DHL, ABPP, Christine Maguth Nezu, PhD, ABPP, and Lauren B. Johnson, EdM
(11) Family Therapies
Tammy A. Schuler, PhD, David W. Kissane, MD, and I. Zaider, PhD
Section 3 - Addressing the Needs of Cancer Caregivers: Adaptations of Empirically Supported Treatments
(12) CBT for Insomnia for Caregivers
Kelly M. Shaffer, PhD, Patricia Carter, PhD, RN, CNS, Sheila N. Garland, PhD, and Allison J. Applebaum, PhD
(13) Emotion Regulation Therapy for Cancer Caregivers: Targeting Mechanisms of Distress
Aliza A. Panjwani, MA, Mia S. O'Toole, PhD,Allison J. Applebaum, PhD, David M. Fresco, PhD, and Douglas S. Menin, PhD
(14) Meaning-Centered Psychotherapy for Cancer Caregivers (MCP-C)
Allison Applebaum, PhD
Section 4 - Delivery of Support to Caregivers in the Community
(15) The Cancer Support Community: A Person-Centered Model of Evidence-Based Cancer Caregiver Support
Joanne S. Buzaglo, PhD, Alexandra K. Zaleta, PhD, Margaret L. Longacre, PhD, and Mitch Golant, PhD
(16) American Cancer Society's Delivery of Support to Caregivers in the Community
Rachel S. Cannady, BS and Katherine Sharpe, MTS
(17) CancerCare - A Psychosocial Oncology Support Organization
Sarah K. Kelly, MSW, LCSW and William Goeren, LCSW-R, OSW-C, ACSW
Section 5 - Future Directions
(18) Important Legal Concerns Faced by Informal Cancer Caregivers
Debra Wolf, JD and Cristina Pejoves Gorman, JD
(19) Conclusions and Future Directions
Allison Applebaum, PhD

Cancer Caregivers

Edited by Allison J. Applebaum

Author Information

Edited by Allison J. Applebaum, Assistant Attending Psychologist, Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center

Allison J. Applebaum, PhD is Assistant Attending Psychologist and director of the Caregivers Clinic at the Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center. She is also an Assistant Professor of Psychology in Psychiatry at Weill Cornell Medical College, New York, New York.

Contributors:

Laurie Anderson, MD
Fellow
Department of Palliative Care Medicine
The University of Texas MD Anderson Cancer Center
Houston, TX
USA

Allison J. Applebaum, PhD
Assistant Attending Psychologist
Department of Psychiatry and Behavioral Sciences
Memorial Sloan Kettering Cancer Center
Assistant Professor of Psychology in Psychiatry
Weill Cornell Medical College
New York, NY
USA

Marie A. Bakitas, DNSc, APRN, FAAN
Professor, Marie L. O'Koren Endowed Chair
School of Nursing
University of Alabama at Birmingham
Birmingham, AL
USA

Margaret Bevans, PhD,RN, AOCN, FAAN
Program Director
Scientific Resources
and
Clinical Nurse Scientist
Nursing Research & Translational Science
National Institutes of Health Clinical Center
Bethesda, MD
USA

William S. Breitbart, MD
Chairman, Department of Psychiatry and Behavioral Sciences
The Jimmie C. Holland Chair in Psychiatry Oncology
Chief, Psychiatry Service
Memorial Sloan Kettering Cancer Center
Professor of Clinical Psychiatry
Weill Medical College of Cornell University
New York, NY
USA

Joanne S. Buzaglo, PhD
Executive Director, PRO Solutions
Vector Oncology
Memphis, TN
USA

Rachel S. Cannady, BS
Strategic Director, Cancer Caregiver Support
American Cancer Society
Atlanta, GA
USA

Patricia Carter, PhD, RN, CNS
Associate Professor
School of Nursing
The University of Texas at Austin
Austin, TX
USA

J. Nicholas Dionne-Odom, PhD, RN, ACHPN
Postdoctoral Fellow
School of Nursing
University of Alabama at Birmingham
Birmingham, AL
USA

Bonnie Dockman, LMSW
Program Facilitator
FOCUS Program
Cancer Support Community
University of Michigan Rogel Cancer Center
Ann Arbor, MI
USA

Betty Ferrell, PhD, MA, FAAN, FPCN, CHPN
Director and Professor
Division of Nursing Research and Education
Department of Population Sciences
City of Hope National Medical Center
Duarte, CA
USA

David Fresco, PhD
Professor
Director of the Psychopathology and Emotion Regulation Laboratory (PERL)
Co-Director of the Kent Electrophysiological Neuroscience Laboratory
Department of Psychological Sciences
Kent State University
Kent, OH
USA

Sheila N. Garland, PhD
Assistant Professor
Department of Psychology
Memorial University of Newfoundland
St. John's, Newfoundland, Canada

Login George, PhD, MA
Department of Psychological Sciences
University of Connecticut
Storrs, CT
USA

Barbara Given, PhD, RN, FAAN, FAPOS
University Distinguished Professor Emerita
Interim Associate Dean for Research
College of Nursing
Michigan State University
East Lansing, MI
USA

Charles Given, PhD
Professor
Department of Family Medicine
Michigan State University
East Lansing, MI
USA

William Goeren, LCSW-R, OSW-C, ACSW
Director of Clinical Programs
CancerCare
New York, NY
USA

Mitch Golant, PhD
Senior Consultant, Strategic Initiatives
Cancer Support Community
Los Angeles, CA
USA

Cristina Pejoves Gorman, JD
Senior Staff Attorney
LegalHealth
New York Legal Assistance Group
New York, NY
USA

Tamryn Gray, PhD, MSN, RN, CNL, BMTCN
Postdoctoral Research Fellow
Dana-Farber Cancer Institute
Harvard Medical School
Boston, MA
USA

Joseph Greer, PhD
Assistant Professor and Clinical Director
Department of Psychiatry
and
Research Scientist
Center for Psychiatric Oncology and Behavioral Sciences
Massachusetts General Hospital Cancer Center
Boston, MA
USA

Jamie Jacobs, PhD
Psychologist
Massachusetts General Hospital Cancer Center
and
Instructor
Department of Psychiatry
Harvard Medical School
Boston, MA
USA

Lauren B. Johnson, EdM
Doctoral Candidate
Department of Psychology
Drexel University
Philadelphia, PA
USA

Sarah K. Kelly, MSW, LCSW
Clinical Supervisor
CancerCare
New York, NY
USA

Erin E. Kent, PhD, MS
Epidemiologist and Program Director
Outcomes Research Branch
National Cancer Institute
Bethesda, MD
USA

Youngmee Kim, PhD
Director
Department of Psychology
FAMILY Lab
University of Miami
Miami, FL
USA

David W. Kissane, MD
Professor of Psychiatry and Head
Department of Psychiatry
Monash University
Melbourne, Australia

Maria Kryzo-Lacombe, MA
Graduate Student Researcher
Department of Psychology
San Diego State University
San Diego, CA
USA

Kristen Litzelman, PhD
Assistant Professor
Human Development and Family Studies
University of Wisconsin-Madison
Madison, WI
USA

Margaret Longacre, PhD
Assistant Professor
Department of Public Health
Arcadia University
Philadelphia, PA
USA

Douglas S. Mennin, PhD
Professor
Department of Psychology
Health Psychology and Clinical Science
Hunter College
New York, NY
USA

Michelle A. Mollica, PhD, MPH, RN, OCN
Program Director
Outcomes Research Branch
Healthcare Delivery Research Program
National Cancer Institute
Bethesda, MD
USA

Arthur M. Nezu, PhD, DHL, ABPP
Professor of Medicine
Professor of Community Health and Prevention
Department of Psychology
Drexel University
Philadelphia, PA
USA

Christine Maguth Nezu, PhD, ABPP
Professor of Psychology
Professor of Medicine
Department of Psychology
Drexel University
Philadelphia, PA
USA

Hannah-Rose Mitchell, MPH
Graduate Research Assistant
Department of Psychology
FAMILY Lab
University of Miami
Miami, FL
USA

Laurel Northouse, PhD, RN, FAAN
Professor Emerita
University of Michigan School of Nursing
Ann Arbor, MI
USA

Mia S. O'Toole, PhD
Associate Professor
Department of Psychology and Behavioral Sciences
Aarhus University
Aarhus, Denmark

Aliza A. Panjwani, MA
Doctoral Candidate
Health Psychology and Clinical Science Program at the Graduate Center
City University of New York
New York, NY
USA

Patricia B. Pedreira, BS
Research Project Coordinator
Department of Psychology
FAMILY Lab
University of Miami
Miami, FL
USA

Laura C. Polacek, BA
Doctoral Student
Fordham University
New York, NY
USA

Tammy A. Schuler, PhD
Director of Outreach and Partnerships
Association for Behavioral and Cognitive Therapies
New York, NY
USA

Kelly Shaffer, PhD
Clinical Psychologist and Research Fellow
Department of Psychiatry and Behavioral Sciences
Center for Behavioral Health and Technology
Memorial Sloan Kettering Cancer Center
New York, NY
USA

Katherine Sharpe, MTS
Senior Vice President, Patient and Caregiver Support
American Cancer Society
Atlanta, GA
USA

Clayton Shuman, PhD, RN
Assistant Professor
Department of Systems, Populations and Leadership
University of Michigan School of Nursing
Ann Arbor, MI
USA

Wen-Ying Sylvia Chou, PhD, MPH
Program Director
Health Communication and Informatics Research Branch
Behavioral Research Program
National Cancer Institute
Bethesda, MD
USA

Kimberson C. Tanco, MD
Assistant Professor
Department of Palliative Care and Rehabilitation Medicine
Division of Cancer Medicine
The University of Texas MD Anderson Cancer Center
Houston, TX
USA

Amanda Ting, BS
Graduate Research Assistant
Department of Psychology
FAMILY Lab
University of Miami
Miami, FL
USA

Marita Titler, PhD, RN, FAAN
Professor
Rhetaugh G. Dumas Endowed Professor
Department of Systems, Populations and Leadership
University of Michigan School of Nursing
Ann Arbor, MI
USA

Lara Traeger, PhD
Psychologist
Massachusetts General Hospital Cancer Center
and
Assistant Professor
Department of Psychiatry
Harvard Medical School
Boston, MA
USA

Moira Visovatti, PhD, RN
Assistant Professor
Department of Health Behavior and Biological Sciences
University of Michigan School of Nursing
Ann Arbor, MI
USA

Emily Walsh, BA
Clinical Research Assistant
Department of Psychiatry
Columbia Center for Eating Disorders
New York, NY
USA

Debra Wolf, JD
Senior Supervising Attorney
LegalHealth
New York Legal Assistance Group
New York, NY
USA

Talia Zaider, PhD
Clinical Psychologist
Family Therapy Clinic
Memorial Sloan Kettering Counseling Center
New York, NY
USA

Alexandra K. Zaleta, PhD
Senior Director of Research
Cancer Support Community
Philadelphia, PA
USA

Cancer Caregivers

Edited by Allison J. Applebaum

Reviews and Awards

"We are fortunate to see a growing body of academic literature on informal caregivers. Cancer Caregivers serves as an important testament to the weight carried by these individuals who, while without cancer themselves, very much live with the disease every day." - Emily M. Sorg, M.D., Donna B. Greenberg, M.D. Psychosomatics Journal