Behavioral Intervention Research in Hospice and Palliative Care: Building an Evidence Base

By George Demiris, Debra Parker Oliver and Karla T. Washington

Behavioral Intervention Research in Hospice and Palliative Care: Building an Evidence Base sets forth research considerations and guidelines to build evidence-based interventions to improve end-of-life care. It is an in-depth introduction to implementation research and showcases how a clinical need is identified to inform an intervention. The book extensively examines the various phases of intervention research, including design, implementation, evaluation, dissemination and translation. The book focuses on methodological, ethical and practical issues.

The science behind the quality of hospice and palliative care lags behind that of traditional medical practice, despite the continuous growth of palliative care interdisciplinary teams. Researching, developing and testing strategies is essential to advancing the effectiveness and value of this care.

• Informs readers how to conduct intervention research toward identifying best care
• Advises readers on design, implementation and evaluation of research
• Provides step-by-step templates to develop an intervention study
• Includes mock protocols from successful intervention trials
• Synthesizes lessons learned by established intervention researchers in hospice and palliative care

• Language: English
• Publisher: Academic Press
• Release date: Oct 12, 2018
• ISBN: 9780128144503

George Demiris

George Demiris is a PIK (Penn Integrates Knowledge) University Professor in the School of Nursing with a joint appointment in the Department of Biostatistics, Epidemiology and Informatics in the Perelman School of Medicine at the University of Pennsylvania.

Book preview

Behavioral Intervention Research in Hospice and Palliative Care

Building an Evidence Base

George Demiris

University of Pennsylvania, Philadelphia, PA, United States

Debra Parker Oliver

University of Missouri, Columbia, MO, United States

Karla T. Washington

University of Missouri, Columbia, MO, United States

Table of Contents

Cover image

Title page

Copyright

Dedication

The Hospice Caregiving Research Network

Expert Contributors Bios

Foreword

Acknowledgments

Chapter 1. A Roadmap to Behavioral Intervention Research in Hospice and Palliative Care

Abstract

1.1 Introduction

1.2 Main Concepts

1.3 A Model of Behavioral Intervention Research in Hospice and Palliative Care

1.4 Book Overview

References

Chapter 2. The Foundations of Behavioral Intervention Research in Hospice and Palliative Care

Abstract

2.1 Introduction

2.2 A Brief History of Hospice and Palliative Care

2.3 Research in Hospice and Palliative Care: Past, Present, and Future

2.4 Team Science: An Interdisciplinary Approach to Research

References

Chapter 3. Defining and Analyzing the Problem

Abstract

3.1 Introduction

3.2 Synthesizing the Evidence

3.3 Considerations Specific to Hospice and Palliative Care Reviews

3.4 Keystone Implications

References

Chapter 4. Designing an Intervention

Abstract

4.1 Introduction

4.2 Theory as the Foundation for Interventions

4.3 Choosing an Intervention

4.4 Engaging Stakeholders in Intervention Design

4.5 Intervention Components

4.6 Hospice and Palliative Care Settings

4.7 Specific Considerations for Intervention Design

4.8 Developing Intervention Protocols

4.9 Importance of Preliminary Work

4.10 Ethical and Cultural Considerations of Intervention Design

4.11 Keystone Implications

References

Chapter 5. Planning, Pilot-Testing, and Refining the Intervention

Abstract

5.1 Introduction

5.2 Considerations for a Pilot Test

5.3 Essential Resources

5.4 Treatment Fidelity

5.5 Data Collection and Organization

5.6 Data and Safety Monitoring Plan

5.7 Data Integrity

5.8 Keystone Implications

References

Chapter 6. Conducting a Clinical Trial

Abstract

6.1 Introduction

6.2 Study Design

6.3 Recruitment and Retention

6.4 Special Methodological Considerations

6.5 Economic Analysis

6.6 Keystone Implications

References

Chapter 7. Disseminating Findings and Translating the Intervention

Abstract

7.1 Introduction

7.2 Dissemination of Knowledge

7.3 Translation into Practice

7.4 Linking Research to Practice and Policy

7.5 Keystone Implications

References

Appendix

Appendix A.1 Sample Authorship Policy

Appendix A.2 Literature Review Protocol Template

Appendix A.3 Sample Data Extraction Template

Appendix A.4 Article Quality Assessment Template

Appendix A.5 Study Protocol Checklist*

Appendix A.6 Treatment Fidelity Protocol for the PISCES study

Appendix A.7 Example of an Intervention Monitoring Tool for the PISCES study

Appendix A.8 Detailed Data and Safety Monitoring Plan for the PISCES Study

Appendix A.9

Reference

List of Abbreviations

Index

Copyright

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Notices

Knowledge and best practice in this field are constantly changing. As new research and experience broaden our understanding, changes in research methods, professional practices, or medical treatment may become necessary.

Practitioners and researchers must always rely on their own experience and knowledge in evaluating and using any information, methods, compounds, or experiments described herein. In using such information or methods they should be mindful of their own safety and the safety of others, including parties for whom they have a professional responsibility.

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ISBN: 978-0-12-814449-7

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Dedication

To the patients and caregivers who have taken part in our research.

We are grateful.

The Hospice Caregiving Research Network

Motivated by a passion to improve end-of-life care using innovative technological applications, Drs. George Demiris and Debra Parker Oliver began collaborating on behavioral intervention research in hospice and palliative care nearly 20 years ago. Well before widespread availability of broadband Internet access and videoconferencing solutions such as Skype, Dr. Demiris, a biomedical and health informaticist, and Dr. Parker Oliver, a social worker, sociologist, and long-time hospice administrator, were among the first to study telehospice, the use of telehealth technologies to overcome geographic distances in the delivery of hospice care. In 2006, they were joined by then-graduate student Karla Washington, a clinical social worker and budding researcher with an interest in behavioral interventions to support psychosocial health. As of this writing, Drs. Demiris, Parker Oliver, and Washington compose the core investigative team of the Hospice Caregiving Research Network. This collective of individuals across the United States is committed to improving the caregiving experience by offering expert support for compassionate care.

Most of the network's studies have been conducted in partnership with hospice agencies. However, network researchers began in 2013 to expand their work upstream by testing behavioral interventions that support care for patients and families who may not yet (or ever) receive hospice services. For example, they began in 2016 testing an intervention using telehealth technologies to include distant family members in care plan meetings for nursing home residents receiving palliative care. In 2017, they concluded pilot-testing of a problem-solving intervention for family caregivers of patients with cancer who are receiving outpatient palliative care services. The intervention was highly feasible in this setting and generated promising efficacy data to support its potential to reduce caregiver anxiety. The following paragraphs highlight the authors’ professional credentials and interests.

George Demiris, PhD, FACMI, is a PIK (Penn Integrates Knowledge) University Professor at the University of Pennsylvania with joint appointments in Biobehavioral Health Sciences in the School of Nursing, and Biostatistics, Epidemiology and Informatics in the Perelman School of Medicine.

Dr. Demiris was born and raised in Athens, Greece, and completed his undergraduate studies in Medical Informatics at the University of Heidelberg in Germany. He completed his doctorate in Health Informatics in 2000 at the University of Minnesota. His research focuses on the design, implementation, and evaluation of informatics systems to engage and empower older adults and their families, and on tools to facilitate a redesign of home health and hospice care. Before joining the University of Pennsylvania, he was a faculty member at the University of Washington, where he directed the Clinical Informatics and Patient Centered Technologies Program, and the Aging and Informatics Training Program. He has conducted clinical trials to examine the effectiveness of supportive interventions in reducing anxiety and improving quality of life for family caregivers in the home setting. He has also examined using smart home technologies to promote aging in place as well as technology-enabled behavioral interventions for family caregivers. He is a Fellow of the American College of Medical Informatics and the Gerontological Society of America. He is the Principal Investigator of a clinical trial examining the value of the PISCES (Problem-solving Intervention to Support Caregivers in End of Life-Care Settings), funded by the National Institute of Nursing Research.

Debra Parker Oliver, PhD, MSW, is the Paul Revare Family Professor of Family Medicine in the Department of Family and Community Medicine at the University of Missouri, where she conducts research in hospice and palliative care. As a former administrator of three hospice agencies, Dr. Parker Oliver is especially interested in improving patient and family outcomes. Her research has sought to design and test interventions that improve the hospice team experience by involving caregivers in decision making. She is also interested in using social media as a mechanism for supporting and educating family caregivers. During her studies at the University of Missouri, Dr. Parker Oliver earned a Master's of Social Work in 1985 and a Doctor of Philosophy in Rural Sociology in 2000. Project Death in America recognized her with its Social Work Leadership Award and its Community Education Award. She is a long-time member of the board of directors of the Social Work Hospice and Palliative Care Network and an honorary lifetime member of the American Academy of Hospice and Palliative Medicine. Dr. Parker Oliver has served as associate editor of the Journal of Pain and Symptom Management and as Editor-in-Chief of Research on Aging. She was Principal Investigator of the National Institute of Nursing Research-funded trial of the behavioral intervention known as ACTIVE (Assessing Caregivers for Team Intervention via Video Encounters) and concluded in 2017 a National Institute on Aging pilot behavioral intervention trial of FIND (Families Involved in Nursing Home Decision Making). She is Principal Investigator on a National Cancer Institute-funded study of the ACCESS (Access for Cancer Caregivers to Education and Support for Shared Decision Making) intervention which was started in 2017 and is scheduled to be completed in 2021. This study investigates family caregiver decision making in hospice team meetings in combination with education and support for caregivers using Facebook.

Karla T. Washington, PhD, LCSW, is an assistant professor of Family and Community Medicine at the University of Missouri, where she conducts behavioral intervention research in hospice and palliative care. Dr. Washington is a licensed clinical social worker who designs and tests interventions for reducing psychosocial distress among seriously ill patients and their family caregivers. In her studies at University of Missouri School of Social Work, she earned a Master's of Social Work in 2000 and a Doctor of Philosophy in 2009, which was supported by the John A. Hartford Foundation Pre-Dissertation Award and Doctoral Fellowship. As an assistant professor, she was selected as a Hartford Geriatric Social Work Scholar and later received the Social Work Hospice and Palliative Care Network Award for Excellence in Psychosocial Research and the Dorsett L. Spurgeon MD Distinguished Medical Research Award. In 2017, Dr. Washington concluded a National Cancer Institute-funded study in which she piloted a problem-solving intervention for family caregivers of patients with cancer who were receiving outpatient palliative care.

Expert Contributors Bios

Hoda Badr, PhD, is associate professor and health psychologist in the Department of Medicine at Baylor College of Medicine. She is coleader of the Cancer Prevention and Population Sciences Program and directs the Adult Cancer Survivorship Research Group at the Dan L. Duncan Comprehensive Cancer Center. Dr. Badr’s research focuses on developing and implementing psychosocial interventions that leverage family support to improve patient and caregiver health behaviors and well-being across the cancer-control continuum. Toward that end, she has developed novel methodologies to assess and analyze patient–caregiver dynamics and used eHealth platforms to facilitate patient/caregiver engagement with health promotion materials and dissemination.

Marie Bakitas, DNSc, APRN, NP-C, AOCN, ACHPN, FAAN, is professor, Marie L. O’ Koren Endowed Chair, School of Nursing, and associate director, Center for Palliative and Supportive Care, University of Alabama at Birmingham. She has participated in or led over 50 clinical trials in symptom management and early palliative care, including ENABLE (Educate, Nurture, Advise Before Life Ends), the first early palliative care trial to demonstrate positive outcomes in quality of life, symptoms, mood, and survival in cancer patients and family caregivers. Dr. Bakitas has published over 100 original data-based papers, book chapters, and books. Among her research and mentoring awards are the 2015 Friends of the National Institute of Nursing Research Path-Paver Award, the 2016 Oncology Nursing Society Distinguished Researcher Award, and the University of Alabama at Birmingham Minority Health Research 2016 Charles Barkley Excellence in Mentoring Award.

Ira Byock, MD, FAAHPM, is a palliative care physician, author, and public advocate for improving care through the end of life. He is founder and chief medical officer of the Institute for Human Caring of Providence St. Joseph Health, based in Torrance, CA. Dr. Byock has written extensively about the ethics and practice of palliative care. His research has led to conceptual frameworks for the experience of advanced illness, subjective quality-of-life measures and simple, effective life-completion counseling. His books include Dying Well, The Four Things That Matter Most, and The Best Care Possible.

Susan Enguídanos, PhD, MPH, is associate professor at the Leonard Davis School of Gerontology at the University of Southern California. Dr. Enguídanos’s palliative care research focuses on developing and testing longitudinal care models and promoting access to the models among diverse populations. She has conducted extensive research on a home-based palliative care program that reduced care costs for those in their last year of life by 33% while improving patient satisfaction with care. Dr. Enguídanos has conducted numerous studies investigating not only ethnic variation in access to care and quality of care but also patient and caregiver attitudes and beliefs toward hospice care.

Mary Ersek, PhD, RN, FPCN, is professor of palliative care at the University of Pennsylvania School of Nursing, and senior scientist, Veteran Experience Center at the Corporal Michael J. Crescenz Veterans Affairs Medical Center in Philadelphia. Dr. Ersek leads an interdisciplinary research program focused on pain and palliative care in older adults, with an emphasis on nursing home residents and dementia patients. This research includes a National Institutes of Health-funded randomized controlled trial that examined the effectiveness of a pain management algorithm for improving clinical practices and patient outcomes in nursing home residents.

Peter Hudson, PhD, RN, directs the Centre for Palliative Care, an academic unit based at St Vincent’s Hospital and a Collaborative Centre of the University of Melbourne, Australia. He is a Professor (Hon) at the University of Melbourne and Professor (Hon) at the Vrije University of Brussels (Belgium). Dr. Hudson has more than 25 years’ experience in palliative care practice, education, and research. He is a past vice president of Palliative Care Australia and past member of the board of directors of the International Association for Hospice and Palliative Care. Dr. Hudson is chair of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration, and he is an international expert advisor to the All-Ireland Institute of Hospice and Palliative Care. He has received a United States Fulbright scholarship and the Premier's Award for translating evidence into practice.

Diane E. Meier, MD, FACP, FAAHPM, directs the Center to Advance Palliative Care, a national organization devoted to increasing access to quality palliative care in the United States. She is codirector of the Patty and Jay Baker National Palliative Care Center, professor of geriatrics and palliative medicine, Catherine Gaisman Professor of Medical Ethics, and she founded and Directed the Hertzberg Palliative Care Institute (1997–2011), all at the Icahn School of Medicine at Mount Sinai in New York City. Dr. Meier served as a Health and Aging Policy Fellow in Washington, DC (2009–2010), working both on the Senate’s Committee on Health, Education, Labor, and Pensions and at the Department of Health and Human Services. Dr. Meier has published over 200 peer-reviewed publications in the medical literature. In 2014, she published Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Reform.

Kathi Mooney, PhD, RN, FAAN, is distinguished professor and Louis S. Peery and Janet B.