A National Cancer Institute-designated Comprehensive Cancer Center

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Family Caregiver Project

Improving Quality of Life and Quality of Care for Oncology Family Caregivers
The primary aim of this oncology educational initiative is to implement a national education program on family caregiving in cancer. The intent of this program is to improve quality of life and thequality of care for family caregivers who are impacted by a loved one’s cancer across the trajectory of illness.

The program aims to educate competitively chosen multidisciplinary teams (two participants per team) from cancer institutions across the nation in improving care for oncology family caregivers. Using a goal-directed method of teaching, each team will develop three (3) goals related to implementation of family caregiver support activities. These goals will be followed at 6, 12, and 18 months post-course.

The program consists of four annual 3-day courses that provide family caregiver education based on the four (4) domains of quality of life (QOL):
 
  • Physical well-being
  • Psychological well-being
  • Social well-being
  • Spiritual well-being
 
Competitively selected teams (attends 1 course) will receive:
 
  • Free Registration and Course Materials
  • Meals (breakfast, lunch and snacks)
  • $350 stipend per person applied to hotel cost at Paradise Pier Hotel (Disneyland Resort)
  • 6, 12 and 18 month follow-up and support
  • 17.5 CE credits for full attendance of course (CE Provider: City of Hope National Medical Center/Beckman Research Institute approved by the California Board of Registered Nursing, Provider No. 13380 for 17.5 contact hours and the California Board of Behavioral Sciences, Provider #2401 for 17.5 hours of continuring education for LCSWs.) Other disciplines: Certificate of Attendance. No partial CE credits will be given. Must attend entire program to receive contact hours/CE credits and Certificate of Attendance.
 
Background – Scope of the Problem
Family caregivers, although profoundly impacted by a loved one’s cancer diagnosis, have received only minimal attention by most healthcare providers who are focused primarily upon the physical needs of the patient. Family caregivers can be defined as those who provide uncompensated care in the home and who have a pre-existing relationship (either through friendship or kinship) to the person for whom care is being provided. This care can be in any of the QOL domains including physical, social, psychological and spiritual care. It is estimated that two of every three American families will at some time have at least one family member diagnosed with cancer. The current trend toward earlier discharge from acute care hospitals and the expected increase in home care results in more adult children becoming involved in caring for a physically dependent parent. Furthermore, advances in cancer treatment have led to increased survivorship, which in turn has led to caregiving demands that may exist for several months to years.

Family caregivers, like cancer patients themselves, have diverse needs and health concerns. The impact of the disease on the family is multifocal. Caring for a loved one with cancer at home entails inherent physical, psychological and financial burdens. Complex symptom management represents a challenge for the patients and their family members. Family caregivers report feelings of anxiety, depression, fear, helplessness, anger, guilt and uncertainty. They are at risk for increased distress in each domain of QOL when their loved one suffers from uncontrolled symptoms. Furthermore, family caregivers have several needs that range from informational, personal, household, and patient care that are not fully acknowledged by health care providers.

Caregiver needs and access to resources vary based onmany factors, including gender, age, culture, education, economics and geographic setting (rural vs. urban). Those caring for an especially vulnerable loved one with cognitive impairments or one who is physically or emotionally dependent and who requires substitutive decision-making are at even greater risk for increased guilt and complicated bereavement. Perhaps most importantly, caregiver needs vary based upon the trajectory of illness from diagnosis through treatment, survivorship and end of life care. At the time of diagnosis, family caregivers, like patients themselves, may be overwhelmed with the need to adapt to the myriad of new information, decision-making, and adjustments to the impact of the illness upon their lives. Many with cancer find themselves facing their illness as a chronic disease requiring months or even years of active treatment resulting in long-term impact upon family caregivers. Although the survivorship phase may now last for decades, patients are often left with an illness or treatment legacy that continues to require ongoing attention from family caregivers. For those facing end of life, caregiving needs typically escalate as family caregivers attempt to cope with the increasing burden of illness upon their loved one. Because family caregivers may assume their caregiving role under unexpected and difficult circumstances, anticipatory guidance and education regarding effective coping strategies are often desperately needed. Disseminating what has been learned over the past 2 decades of family caregiver research and what is currently being done in model settings can provide professionals with information and ideas to take back to their own institutions for implementation.
 
Project Objectives
Discuss the issues and state-of-the-science for oncology family caregivers through a family caregiver-focused educational curriculum. Identify and refine team goals for improved care for oncology family caregivers within participants’ institutions and disciplines. Evaluate the impact of the curriculum by measuring process and outcomes of the educational activities on family caregivers and institutional change-efforts initiated by the participants that impact family caregivers.
 
Contact
For more information email Shaughnessy Dixson at familycaregiver@coh.org.

Application

The application for our 2013 course  is now available! See "How To Apply" section. the right. For more information email Shaughnessy Dixson at familycaregiver@coh.org.

Applicants areaccepted on a competitive basis. Applications can be submitted until May 31, 2013 or until the course is full. Early application submission is encouraged, as space is limited. Acceptance notifications will be emailed on the first of the month in April, May, and June.
 
Application Due Dates
 
  • March 22, 2013 (Early Acceptance)
  • Applications received before 3/22/2013 - notification of application status by APRIL 1
  • Applications received after 4/1/2013 - notification by MAY 1
  • Applications received after 5/1/2013 - notification by JUNE 1
 
Who Should Apply
Two team members from one institution (comprehensive cancer center, community cancer center, hospitals with oncology programs) may apply:

One team member must be a nurse, physician, social worker or administrator (TIER 1).
 
The second team member may be anyone in Tier 1 or other healthcare professionals such as psychologists, spiritual care professionals, health educators, etc., who participate in the care of cancer patients (TIER 2).
 
In the application process teams will develop three Family Caregiver-related goals for institutional change. During the course teamscan adjust and/or refine their goals. Post course, the teams will implement these goals at their home institution. A evaluation process will beused to measure team progress (See Expected Results).

Institutional support of the team is required and is indicatedby a letter of support from one institution administrator.
 
Expected Results
As each team implements their goalsat their home institution and build a framework for institutional change, there will be improvment in the quality of life and quality of care for Family Caregivers.

The achievement level of goal-driven change will be evaluated at 6, 12, and 18 months. Teams will provide goal updates and complete a brief follow-up survey, and phone interviews at 6, 12, and 18 months. Continuous access to supportive faculty will be available throughtout the 18-month follow-up period.

 

 

Course Agenda

Resources and Links

City of Hope Pain/Palliative Care Resource Center
PRC (Pain/Palliative Care Resource Center) The purpose of the City of Hope P/PRC is to serve as a clearinghouse to disseminate information and resources to assist others in improving the quality of pain management and end of life care. The City of Hope P/PRC, established in 1995, is a central source for collecting a variety of materials including pain assessment tools, patient education materials, quality assurance materials, end of life resources, research instruments and other resources.For Family Caregivers , see section V.a.

ExCEL in Social Work
Excellence in Cancer Education & Leadership
ExCEL strives to improve the delivery of psychosocial-spiritual care for oncology patients through an innovative social work-specific educational program. ExCEL is a collaborative partnership between the City of Hope, the Association of Oncology Social Work (AOSW)and the Association of Pediatric Oncology Social Workers (APOSW). The investigative team for this five-year National Cancer Institute-funded initiative includes: Shirley Otis-Green, Betty Ferrell, Marcia Grant, Brad Zebrack and Barbara Jones. Pre-conferences to theAOSWandAPOSWannual meetings will address critical aspects of quality care while encouraging oncology social workers to meet and exceed the recommendations of the Institute of Medicine (IOM) 2008 Report – “Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs .”

National Consensus Project
“The purpose of the National Consensus Project for Quality Palliative Care is to promote the implementation of Clinical Practice Guidelines that ensure care of consistent and high quality, and that guide the development and structure of new and existing palliative care services.”

CancerCare
CancerCare is a national nonprofit organization that provides free, professional support services and educational programs for anyone affected by cancer, including the professionals who care for them.

Family Caregiver Project Team

Investigators
 
Betty Ferrell, Ph.D., F.A.A.N., M.A., F.P.C.N. – Principal Investigator
Dr. Ferrell is a Professor and Research Scientist at City of Hope Comprehensive Cancer Center in Los Angeles, California. She has been an oncology nurse for 32 years and has extensive research experience in pain and quality of life of cancer patients and their family caregivers. Dr. Ferrell is a Fellow of the American Academy of Nursing and she has over 300 publications in peer-reviewed journals, many addressing family caregiver issues. She is Principal Investigator on numerous educational initiatives including the End-of-Life Nursing Education Consortium (ELNEC) project. Dr. Ferrell is a member of the National Cancer Policy Forum and was Chairperson of the National Consensus Project for Quality Palliative Care. She is also the chairperson of the Southern California Cancer Pain Initiative . She has authored and edited several books, including Cancer Pain Management (1995), a text on Suffering (1995), Pain in the Elderly (1996) and the Oxford Textbook of Palliative Nursing (2010). Dr. Ferrell is co-author of the text – The Nature of Suffering and the Goals of Nursing and Making Healthcare Whole: Integrating Spirituality into Patient Care (Templeton Press, 2010). Dr. Ferrell is also coauthor of the chapter on “Family” in the Oxford Textbook of Palliative Medicine.

Marcia Grant, R.N., DNSc, F.A.A.N. – Co-Investigator
Dr. Grant is the Director of Nursing Research & Education, and Professor in the Department of Population Sciences at the City of Hope. Her primary program of research focuses on symptom management and quality of life in cancer patients. Dr. Grant’s current studies focus on the effects of an advanced practice nurse-led post discharge intervention for bone marrow transplant survivors, quality of life in ostomy patients, and improving end-of-life and cancer survivor care. She is Principal Investigator on several grants including the NCI-funded studies in Standardized Nursing Intervention Protocol and “Survivorship Education for Quality Cancer Care.” Dr. Grant serves on several national committees and is on the editorial boards for CA: A Journal for Clinicians and Seminars in Oncology Nursing. Her educational leadership is demonstrated in her receipt of the 2003 Oncology Nursing Society Mary Nowotny Excellence in Cancer Nursing Education Award. She recently received the Oncology Nursing Society Distinguished Award for Lifetime Achievement.

Shirley Otis-Green, M.S.W., L.C.S.W., A.C.S.W., O.S.W.-C. – Co-Investigator
Ms. Otis-Green is a licensed clinical social worker and Senior Research Specialist in the Department of Nursing Research and Education at City of Hope. Her research, presentations and publications focus on end-of-life care and integrated symptom management with emphasis upon underserved populations. As the Principal Investigator for the ACE Project, Shirley Otis-Green is a Project on Death in America Social Work Scholar and brings more than 15 years of experience in palliative care research, education and practice to this study. Ms. Otis-Green was one of six national experts to be named a 2006 Mayday Pain Fellow. Ms. Otis-Green is also the Principal Investigator for the NIC-funded “Cancer Care for the Whole Patient (IOM, 2008): An Oncology Social Work Response.” (2010 – 2015).

Gloria Juarez, Ph.D., R.N. – Co-Investigator
Dr. Juarez is an Assistant Professor in the Department of Nursing Research and Education at the City of Hope. She has focused her research on pain and symptom management, QOL, and cultural issues with special interest in the Hispanic population and their caregivers. She has coordinated intervention studies and developed a Spanish version of a pain education intervention. Dr. Juarez has conducted several studies using quantitative and qualitative methodologies. She is the PI of an NCI-funded study to develop a bilingual education intervention for breast cancer survivors and their caregivers.
 
Arti Hurria, M.D. – Co-Investigator
Dr. Hurria is the Director of the Cancer Aging and Research Program and an Associate Professor in the Division of Medical Oncology & Therapeutics Research at City of Hope. Her clinical and research interests are aimed at promoting interdisciplinary research in aging and age-related aspects of cancer. Dr. Hurria was the recipient of a Paul B. Beeson Career Development Award in Aging (K23) from the NCI. She was recently selected to participate in the American Society of Clinical Oncology (ASCO) Leadership Development Program, a prestigious national program in oncology.
 
Smita Bhatia, M.D., M.P.H. – Co-Investigator
Dr. Bhatia is Chair and Professor of the Department of Population Sciences and Director of the Center for Cancer Survivorship at the City of Hope. Her clinical and research expertise is focused on cancer survivorship and measures to reduce associated morbidity. As a childhood cancer survivorship advocate, Dr. Bhatia was recently named as the associate chair of the Children’s Oncology Group (COG), the world’s largest cooperative pediatric cancer research organization.

Matthew J. Loscalzo, M.S.W., L.C.S.W. – Co-Investigator
Mr. Loscalzo is the Executive Director of Supportive Care Medicine and Administrative Director of the Sheri & Les Biller Patient and Family Resource Center at the City of Hope. He is nationally recognized as a Social Work leader and scholar in cancer caregiver stress and coping. Mr. Lozcalzo was President of the American Psychosocial Oncology Society (APOS) from 2006 to 2007.
 
Faculty

Rev. Pamela Baird, AS
Chaplain & Community End-of-Life Consultant
 
Barbara Given, Ph.D., R.N., F.A.A.N.
University Distinguished Professor
Associate Dean for Research
College of Nursing
Michigan State University
 
Joy Goldsmith, Ph.D.
Associate Professor, Communication Studies
Young Harris College, Division of Humanities
 
Myra Glajchen, D.S.W.
Director, Institute for Education and Research in Pain and Palliative Care
Beth Israel Medical Center
 
Barbara Jones, Ph.D., M.S.W.
Associate Professor, School of Social Work
University of Texas at Austin

Frances Marcus Lewis, Ph.D., F.A.A.N.
Virginia and Prentice Bloedel Professor of Nursing
School of Nursing
University of Washington – Seattle
 
Polly M. Mazanec Ph.D., ACNP-BC, AOCN®
Assistant Professor, Francis Payne Bolton School of Nursing
Case Western Reserve University
 
Laurel Northouse, R.N., Ph.D., F.A.A.N.
Mary Lou Willard French Professor of Nursing
School of Nursing
University of Michigan, Ann Arbor
 
Elaine Wittenberg-Lyles, Ph.D.
Associate Professor, Dept. of Communication
Markey Cancer Center
University of Kentucky
 
Staff
 
Jo Hanson, R.N., M.S.N., C.N.S., O.C.N,Project Director
Shaughnessy Dixson, B.A.,Coordinator

 

 
Education and Training
As one of only a select few National Cancer Institute-designated Comprehensive Cancer Centers in the country, City of Hope integrates all aspects of cancer research, treatment and education. We offer a range of programs serving students, post-doctoral trainees, health and medical professionals.

City of Hope’s Irell & Manella Graduate School of Biological Sciences equips students with the skills and strategies to transform the future of modern medicine.
City of Hope has a long-standing commitment to Continuing Medical Education (CME), sharing advances in cancer research and treatment with the health-care community through CME courses such as conferences, symposia and other on and off campus CME opportunities for medical professionals.
Local and national conferences, in-depth educational training and a certification program provide both current and aspiring health professionals opportunities to further their knowledge in their fields of interest.
 
 
City of Hope offers a range of programs and services, such as Graduate Medical Education & Clinical Training, that serve students, post-doctoral trainees, medical professionals and staff.
The goal of the Postdoctoral Training Office is to ensure the postdoctoral experience at City of Hope is rewarding and meaningful to all participants.
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