2014 AJN Award Recipient Person and Family Centered Care 1st Edition

by Jane Barnsteiner, Jennifer Lynn, Joanne Disch,

Author Jane Barnsteiner Jennifer Lynn Joanne Disch Kevin Kent and Mary Walton Isbn 9781938835070 File size 5MB Year 2014 Pages 496 Language English File format PDF Category Family and Friendship Person and Family Centered Care offers a new approach that begins with the person embraces the family and encompasses all care delivery locations At the forefront of this movement are authors Jane Barnsteiner Joanne Disch and Mary K Walton who present a surprisingly practical clinical refere

Publisher :

Author : Jane Barnsteiner, Jennifer Lynn, Joanne Disch, Kevin Kent, and Mary Walton

ISBN : 9781938835070

Year : 2014

Language: English

File Size : 5MB

Category : Family and Friendship



Praise for Person and Family Centered Care
“Person and Family Centered Care is an absolute must-have for executives, faculty, and
practitioners! The concepts and strategies the authors present will enable cross-disciplinary
teams engaged in population health management to create relevant and person-centered
programs that meet the Institute of Medicine’s definition—care that is respectful, responsive,
and inclusive of the values of individuals, families, and communities to be served. Multiple
exemplars are presented for readers as they pursue the design of health services that is inclusive
of consumers. The models described demonstrate the value of person- and family-centered
care in achieving the goals identified by the Institute of Medicine report The Future of Nursing:
Leading Change, Advancing Health. The book contains wonderful examples for nurses and other
health providers on the importance of engaging and working with consumers to lead change
that will ultimately improve their health. I highly recommend this fabulous resource to all
healthcare practitioners and consumers.”
–Linda Burnes Bolton, DrPH, RN, FAAN
Vice President and Chief Nursing Officer
Cedars-Sinai Medical Center
Los Angeles, California

“With the publication of Person and Family Centered Care, Barnsteiner, Disch, and Walton, along
with an impressive roster of thought leaders, have created a much-needed, valuable resource
for twenty-first century healthcare. This book is wonderfully organized with rich, powerful
examples and practical guidance to improve healthcare using a person- and family-centered
approach.”
–Eric S. Holmboe, MD, FACP, FRCP, CAPT, MC, USNR-R
Senior Vice President, Accreditation Council for Graduate Medical Education
Adjunct Professor of Medicine, Yale University School of Medicine

“Person and Family Centered Care provides a comprehensive framework for embedding personand family-centered care into the culture. The authors remind us that for the last 50 years, we
have had a physician-directed, acuity-oriented, hospital-based healthcare system, and while that
served us well during that period of time, the future of health in this country will need to be
radically different.”
–Karen Cox, PhD, RN, FACHE, FAAN
Executive Vice President/Co-Chief Operating Officer
Children’s Mercy Hospital, Kansas City

“If you think of person-centered care as a ‘motherhood and apple pie’ concept, this book will
surprise you. Each chapter sheds light from a new perspective, leading readers—from novice
to expert and across the entire spectrum of healthcare roles—to a deeper understanding of
person- and family-centered care. While not minimizing the challenges, the authors offer a rich
array of strategies for a different future. We need a copy of this book in every curriculum and
workplace!”
–Linda Cronenwett, PhD, RN, FAAN
Co-Director, Robert Wood Johnson Foundation Executive Nurse Fellows Program
Professor and Dean Emeritus, School of Nursing, University of North Carolina at Chapel Hill

Person and
Family Centered Care
Jane H. Barnsteiner, PhD, RN, FAAN
Joanne Disch, PhD, RN, FAAN
Mary K. Walton, MSN, MBE, RN

Copyright © 2014 by Sigma Theta Tau International
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in this book are the property of their respective owners. Their use here does not imply that you may use them for similar or any
other purpose.
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mission is to support the learning, knowledge, and professional development of nurses committed to making a difference in
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ISBN:
EPUB ISBN:
PDF ISBN:
MOBI ISBN:

9781938835070
9781938835087
9781938835094
9781938835100

Library of Congress Cataloging-in-Publication Data
Barnsteiner, Jane Herman, author.
Person- and family-centered care / Jane Barnsteiner, Joanne Disch, Mary Walton.
p. ; cm.
Includes bibliographical references.
ISBN 978-1-938835-07-0 (book : alk. paper) -- ISBN 978-1-938835-08-7 (EPUB) -ISBN 978-1-938835-09-4 (PDF ISBN) -- ISBN 978-1-938835-10-0 (MOBI)
I. Disch, Joanne Marilyn, author. II. Walton, Mary K., author. III. Sigma Theta
Tau International, publisher. IV. Title.
[DNLM: 1. Patient-Centered Care. 2. Nurse-Patient Relations. 3.
Professional-Family Relations. W 84.7]
RT86.3
610.7306’99--dc23
2014016053
First Printing, 2014
Publisher: Renee Wilmeth
Acquisitions Editor: Emily Hatch
Editorial Coordinator: Paula Jeffers
Cover Designer: Rebecca Batchelor
Interior Design/Page Layout: Kim Scott
Indexer: Joy Dean Lee

Principal Book Editor: Carla Hall
Development and Project Editor: Kevin Kent
Development Editor: Jennifer Lynn
Copy Editor: Erin Geile
Proofreaders: Erin Geile, Heather Wilcox

Dedications
To Claire Fagin, PhD, RN, FAAN, eminent nurse leader, whose work on the importance of family
presence has served as a lodestar for me throughout my career. In 1970, I read Claire’s doctoral
dissertation (The Effects of Maternal Attendance During Hospitalization on the Behavior of Young
Children, 1966, Philadelphia, PA: F.A. Davis) for a paper I was writing in my undergraduate
program at the University of Pennsylvania. The notion of the profound importance of family
presence and participation has served as a cornerstone for my work the past 44 years.
–Jane H. Barnsteiner
To Rocky Schmitz, my first head nurse, who introduced nursing practices 45 years ago that
epitomized person- and family-centered care. These included extensive pre-op and home
instructions, teaching patients how to regulate their own Coumadin dosages, and establishing
medication self-administration and individualized visiting hours. She created a nursing unit
where personalized care, interdisciplinary teamwork, and professional development flourished—
and she still today exerts a powerful influence on those of us privileged to have worked with her.
–Joanne Disch
To the children I cared for during my 3 decades of pediatric nursing practice. Children with
cystic fibrosis and their parents embodied the healing power of family. Although I shared my
knowledge and skills, they shared how to live happy and independent lives despite the need
to integrate burdensome care routines into their everyday routine. The privilege of knowing
and caring for them is one of the gifts of being a nurse. Their philosophy of life informs my
work today.
–Mary K. Walton

Acknowledgments
We would like to express our thanks to Emily Hatch, our book editor, who has provided terrific
support and encouragement throughout the process of writing this book. We also thank Carla
Hall for her production coordination and Kevin Kent, Jennifer Lynn, and Erin Geile for their
unerring and meticulous editing that greatly enhanced our original words. Without this team,
there would be no book.
And on a broader scale, we want to acknowledge the daily, often challenging but vitally important
contributions that nurses make to deliver person- and family-centered care. Healthcare delivery
today can be daunting, and yet these nurses in all settings and situations practice exquisitely.
Without them too, this book would not be possible.

About the Authors
Jane H. Barnsteiner, PhD, RN, FAAN, is professor emerita of pediatric nursing at the University of Pennsylvania School of Nursing. Barnsteiner received her diploma of nursing from
­Misericordia Hospital School of Nursing in Philadelphia, BSN and MSN degrees from the University of Pennsylvania, and PhD from the University of Michigan. In addition to her multiple
academic roles in the School, she served as director of nursing for Translational Research at the
Hospital of the University of Pennsylvania and as director of nursing practice and research at The
Children’s Hospital of Philadelphia. Her scholarship focuses on evidence-based practice, translational research, and patient safety, and, with a colleague, she was the first to apply the theory of
therapeutic relationships to healthcare professionals in settings other than mental health. Barnsteiner is one of the developers of the Quality and Safety Education for Nurses (QSEN) initiative
and is co-author with Gwen Sherwood of the recently published text Quality and Safety in Nursing: A Competency Based Approach to Improving Outcomes (Wiley Blackwell, 2012). She currently
serves as editor for translational research and quality improvement for the American Journal of
Nursing. She has received the Distinguished Contributions to Nursing Research Award and the
STTI Dorothy Garrigus Adams Award for Excellence in Fostering Professional Standards.
Joanne Disch, PhD, RN, FAAN, is professor ad honorem at the University of Minnesota School
of Nursing. She has extensive experience as an educator, chief nurse executive, researcher, leader,
policymaker, and spokesperson with degrees from the University of Wisconsin (Madison), the
University of Alabama in Birmingham, and the University of Michigan.
Throughout her career, Disch has held numerous national leadership positions, including board
chair and board member for AARP, president of the American Association of Critical-Care
Nurses, and immediate past president of the American Academy of Nursing. Currently, she is a
member of the board of directors for Aurora Health Care and chair of the Chamberlain College
of Nursing board of trustees.
For more than 8 years, she was a faculty lead on the Quality and Safety Education for Nurses
(QSEN) project, responsible for the content on patient-centered care. She has spoken widely and
published extensively on the topic and has created system change in both academic and clinical
settings to support the full inclusion of persons and their families in the care relationship.
Mary K. Walton, MSN, MBE, RN, is nurse ethicist and director of patient and family centered
care at the Hospital of the University of Pennsylvania. Walton received her BSN and MSN from
the University of Pennsylvania and earned a master of bioethics degree and a certificate in clinical ethics mediation from the University of Pennsylvania School of Medicine. She has practiced
in academic healthcare settings for over 35 years and has a progressive history of leadership.
Roles of clinical nurse specialist and nurse manager included responsibility for clinical ethics
committees and ethics consultation services, cultural competency training, and establishment
of evidence-based practice standards. Currently, she is responsible for organizational initiatives
focused on clinical ethics and improving the patient and family experience of care. She has published in the areas of collaboration, advocacy, healthy work environment, nursing history, and

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Person- and Family-Centered Care

patient-centered care. Recent relevant publications include the chapter on “Patient-Centered
Care” in Sherwood and Barnsteiner’s book (noted previously) and an American Journal of Nursing
article on “Communicating with Family Caregivers” (2011).

Contributing Authors
Rita K. Adeniran, DrNP, RN, NEA-BC, serves as director, Office of Diversity and Inclusion, and
global nurse ambassador of the Hospital of the University of Pennsylvania (HUP). She provides
strategic leadership and direction for diversity, inclusion, and cultural competency for the HUP.
Her leadership has brought recognition to the HUP in cultural competence education and as a
resource for nurses worldwide. Adeniran was appointed to the Robert Wood Johnson Executive
Nurse Fellows (RWJENF) program for 2012–2015. Adeniran is nationally and globally recognized as a consultant, educator, and author in the areas of diversity, inclusion, cultural competency, and development of frontline nursing leadership.
Jehad Z. Adwan, PhD, RN, is a clinical assistant professor at the University of Minnesota School
of Nursing. He also serves as a pediatric nurse at the Amplatz Children’s Hospital, Minneapolis,
Minnesota. Adwan received his undergraduate education in Gaza, Palestine, in 1993, where he
practiced nursing in various settings. He came to Minnesota in 1998 as a Fulbright scholar and
earned a master’s degree in nursing education in 2000. He completed the PhD program in 2010
and a certificate program in healthcare informatics in 2013. Adwan’s teaching includes didactic and clinical instruction as part of the BSN and MN pediatric courses. He also co-teaches in
the interprofessional Immunization Tour class with colleagues from the School of Nursing and
­College of Pharmacy. He has been involved in teaching a Massive Online Open Course (MOOC)
on interprofessional healthcare informatics. Adwan’s research interests include grief among
nurses, children with chronic conditions, and health informatics.
Gail E. Armstrong, DNP, ACNS-BC, CNE, is an associate professor at the University of Colorado College of Nursing. Armstrong’s early work in quality and safety was in her medical-surgical
practice and focused on tracking and working to improve patient outcomes on her unit. Armstrong’s increasing focus in quality and safety began in 2007 with her work in the national initiative Quality and Safety Education for Nurses (QSEN). Armstrong worked on the University of
Colorado College of Nursing leadership team to update CU’s pre-licensure clinical courses to
reflect quality and safety trends. Her work in QSEN has focused on curriculum development with
an emphasis on threading the competencies and knowledge, skill, and attitude elements across
the classroom setting, skills/simulation lab, and clinical rotations.
Amy J. Barton, PhD, RN, FAAN, is professor, Daniel and Janet Mordecai Endowed Chair for
Rural Health Nursing, and associate dean for clinical and community affairs at the University
of Colorado College of Nursing. As associate dean, Barton is responsible for the continuum of
clinical education, which includes oversight of laboratory and simulation experiences, coordination and staffing of over 600 clinical education placements per semester, and leadership of faculty
practice. Barton obtained federal funding for Sheridan Health Services, a nurse-managed, federally qualified health center. She has published articles and book chapters on topics including

Contributing Authors ix

faculty practice, patient outcomes, quality and safety, and informatics. She served as national
nursing faculty advisor for the Josiah Macy, Jr. Foundation/IHI Open School initiative, Retooling
for Quality and Safety, which involved educating medical and nursing students together. Barton
is a member of the 2005 cohort of the Robert Wood Johnson Executive Nurse Fellows, a Distinguished Practitioner in the National Academies of Practice, and a fellow in the American Academy of Nursing.
Carrie Brady, JD, MA, is principal at CBrady Consulting. She is a consultant, author, and
speaker who partners with hospitals to develop creative solutions to their operational challenges.
For more than 15 years, Brady has worked with clinical and administrative leaders and frontline
caregivers to improve the patient and staff experience, engage patients and families, and enhance
quality and safety. Brady also has collaborated with policymakers on several national initiatives,
including the Agency for Healthcare Research and Quality (AHRQ)/Health Research Educational
Trust (HRET), HCAHPS Patient Safety Learning Network program, and Picker Institute’s Always
Events initiative. She is author of the book HCAHPS Basics (HCPro, Inc., 2009) and co-author of
book chapters and resource guides on patient-centered care, including the 2013 World Innovation Summit for Health patient engagement report. Brady has held leadership positions in two
provider associations, serving as vice president of quality at Planetree and as a vice president of
the Connecticut Hospital Association. Brady also has directly served hospital patients and families as a volunteer artist in residence.
Tara A. Cortes, PhD, RN, FAAN, is recognized for her distinguished career spanning executive leadership, nursing education, research, and practice. She is currently the executive director
of the Hartford Institute for Geriatric Nursing and a professor in geriatric nursing at the New
York University College of Nursing. Cortes has provided significant contributions to advance the
health of people, particularly those with limited access to the healthcare system. Importantly, she
has developed collaborative models with advanced practice nurses and physicians in traditional
as well as nontraditional settings to enhance the care of the American elderly population.
Cortes is a fellow of the American Academy of Nursing and a fellow of the New York Academy
of Medicine. She is a past fellow of the Robert Wood Johnson Executive Nurse Fellows program. Cortes serves on several boards, including university boards and boards of healthcare
organizations.
Karen Drenkard, PhD, RN, NEA-BC, FAAN, is SVP/chief clinical officer and chief nursing
officer at GetWellNetwork, an interactive patient engagement technology solution firm. Her past
experience includes serving as executive director at the American Nurses Credentialing Center
and as SVP/chief nurse executive of Inova Health System in northern Virginia. Drenkard has
published in the nursing literature on topics including strategic planning and leadership, disaster
preparedness, and quality and safety in nursing; she was the principal investigator in HRSAfunded research involving the implementation of a human caring model in acute care hospitals.
She is an editorial advisor to Journal of Nursing Administration and Nursing Administration
Quarterly (NAQ). She is an active member of many nursing and civic organizations, serves on
the board of visitors for the University of Pittsburgh School of Nursing, and is a board of trustees
member at Loudoun Hospital. She is a fellow in the American Academy of Nursing.

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Person- and Family-Centered Care

Autumn Fiester, PhD, is director of education in the Department of Medical Ethics and Health
Policy at the Perelman School of Medicine at the University of Pennsylvania. She is director of the
Penn Clinical Ethics Mediation Program, which promotes clinical ethics mediation as a conflictresolution method in both formal clinical ethics consultations and ethics conflicts at the bedside.
She has been a member of the American Society for Bioethics and Humanities task force on clinical ethics consultation professionalization (Clinical Ethics Consultation Affairs standing committee). She is also co-director (with Lance Wahlert) of the newly launched Bioethics, Sexuality, and
Gender Identity Project that seeks to demarcate a sub-field within bioethics that focuses on the
intersection of LGBTQI issues and medical ethics (http://www.queerbioethics.org/). She is author
of over 70 publications in the areas of clinical ethics, gender and sexuality, and animal ethics.
Jessie Gruman, PhD, is president and founder of the Center for Advancing Health, a nonpartisan, Washington-based policy institute that, since 1992, has been supported by foundations
and individuals to work on people’s engagement in their healthcare from the patient perspective.
Gruman draws on her experience of treatment for five cancer diagnoses, interviews, surveys, and
empirical research as the basis of her advocacy for policies and practices to overcome the challenges people face in finding good care and getting the most from it. She holds a BA from Vassar
College and a PhD in social psychology from Columbia University and is a professorial lecturer
in the School of Public Health and Health Services at George Washington University. She is a
member of the American Academy of Arts and Sciences and the Council on Foreign Relations
and a fellow of the New York Academy of Medicine and the Society of Behavioral Medicine.
Mary Koloroutis, MSN, RN, is vice president and senior consultant at Creative Health Care
Management. As a co-creator, author, and editor of the Relationship-Based Care series of books
and seminars, Koloroutis helps healthcare organizations create a framework for delivering worldclass care with strong underlying values and principles. One of her most far-reaching programs,
Re-Igniting the Spirit of Caring, helps members of the healthcare team transform their workplaces into cultures where responsibility prevails, relationships thrive, and caring and healing are
the foundations of each working day.
Her most recent works—the Therapeutic Relationships workshop and the book See Me as a
­Person: Creating Therapeutic Relationships with Patients and their Families (Creative Health Care
Management, 2012), co-created with psychologist Michael Trout—emphasize the importance of
an authentic therapeutic connection, with every person needing care as a fundamental condition
for healing.
Koloroutis has her BSN from the University of Mary-Hardin Baylor in Temple, Texas, and earned
an MSN in nursing administration from the University of Minnesota. She currently lives in
Champaign/Urbana, Illinois.
Françoise Mathieu, MEd, CCC, is a certified mental health counsellor, compassion fatigue
specialist at Compassion Fatigue Solutions Inc. Mathieu is author of The Compassion Fatigue
Workbook, which was published by Routledge in 2012. She is a leader in compassion fatigue and
vicarious trauma education in Canada. Her experience stems from many years working as a crisis counsellor and trauma specialist in various settings, such as healthcare, community mental
health, the military, and with victims of crime. Since 2001, she has offered hundreds of seminars

Contributing Authors xi

on compassion fatigue and vicarious trauma across North America to thousands of helping professionals in the fields of healthcare, trauma services, law enforcement, immigration services,
child welfare, palliative care, education, and addiction.
Leslie McLean, MScN, RN, is an advanced practice nurse and project manager with the Capital
Health Cancer Care Program in Halifax, Nova Scotia; coordinator of the Capital Health Clinical
Ethics Consultation Service; and adjunct professor with Dalhousie University School of Nursing.
McLean obtained a bachelor of arts degree from Mount Allison University, a degree in chemistry
from the University of Toronto, a bachelor of science in nursing from McMaster University, and
a master of science in nursing from Dalhousie University. She has worked for over 30 years in a
variety of roles and settings in healthcare, both within Canada and abroad, and is dedicated to
helping to create healthy, supportive work environments for healthcare providers.
Shirley M. Moore, PhD, RN, FAAN, is the Edward J. and Louise Mellon Professor of Nursing
and associate dean for research at Frances Payne Bolton School of Nursing, Case Western Reserve
University. She is past president of the Academy for Healthcare Improvement. She has provided
leadership in six national projects addressing the design and test of interdisciplinary curricula on
continuous quality improvement and is currently co-director of the VA National Quality Scholars
Fellowship Program. Moore was a member of the leadership team of the national Quality and
Safety Education for Nurses (QSEN) project and is a leader in the QSEN Institute located at Case
Western Reserve University. She is director of a National Institutes of Health-funded Center of
Excellence in Self-Management Research. An important dimension of this center is the FIND
Lab, a laboratory that is focused on the full inclusion of persons with disabilities in mainstream
research.
Wesley Nuffer, PharmD, BCPS, CDE, is assistant director of experiential programs at the University of Colorado Skaggs School of Pharmacy and Pharmaceutical Sciences. Nuffer works in
the experiential office of the School of Pharmacy, working to coordinate student activities in
pharmacy practice sites during their introductory and advanced pharmacy practice experiences.
He is involved in a number of interprofessional education initiatives both on campus and in
experiential training sites. His research interests include obesity, diabetes, women’s health, and
experiential teaching and learning. He practices in the endocrinology department of University
of Colorado Hospital, helping to manage patients with diabetes.
Meghan Thornton O’Brien, MBE, is an MD candidate for 2014 at the Perelman School of Medicine, University of Pennsylvania. Thornton is a graduate of the Perelman School of Medicine at
the University of Pennsylvania, where she earned her master of bioethics degree. As an undergraduate at Brown University, she studied American studies with a focus on race and ethnicity.
Since starting medical school, she has worked extensively with Puentes de Salud, a Philadelphia
clinic that serves mostly undocumented Spanish-speaking immigrants. She has also worked on
health-policy projects to improve care transitions and looks forward to continuing advocacy
work and patient care as she embarks on the next phase of her clinical training.
Margaret Dexheimer Pharris, PhD, MPH, RN, FAAN, is associate dean and professor for nursing at St. Catherine University in St. Paul and Minneapolis, Minnesota. As associate dean, she
collaborates with 80+ nurse educator colleagues to serve 800+ nursing students from associate

xii

Person- and Family-Centered Care

degree to DNP and actively collaborates on interprofessional education with directors of the 30+
health programs within St. Catherine’s Henrietta Schmoll School of Health. Her vocation focuses
on graduating diverse nurse leaders who are adept at interprofessional team collaboration to
provide high-quality patient-centered care, with particular attention on addressing health inequities. Her community-based collaborative action research is inspired by the theory of Margaret
Newman. With Susan Bosher, Pharris co-edited the 2008 book Transforming Nursing Education:
The Culturally Inclusive Environment (Springer, 2008) and she has co-authored with Carol Pavlish
Community-Based Collaborative Action Research: A Nursing Approach (Jones & Bartlett Learning,
2011), which won a 2011 AJN Book of the Year Award in the research category.
Susan A. Phillips, MSN, RN, PMHCNS-BC, is an advanced practice nurse living in Phoenix,
Arizona, who worked for Banner Health for 26 years. Phillips is a psychiatric mental health clinical nurse specialist and nurse practitioner who has practiced in both the behavioral health and
medical-surgical acute care settings. Most recently, Phillips was senior manager in the Department of Professional Practice at Banner Good Samaritan Medical Center, a Magnet hospital.
Phillips co-facilitated the Workplace Violence Committee there and taught crisis intervention to
employees for many years. Phillips is passionate about creating safe and healthy work environments so nurses can find joy in their work and provide excellent nursing care. She is also adjunct
faculty in the College of Nursing and Health Sciences at University of Phoenix and has taught in
a variety of nursing programs.
Victoria L. Rich, PhD, RN, FAAN, is recognized for her leadership in healthcare, business, and
nursing education, most notably for her pioneering work in patient safety and cultural diversity. She is the 2013 recipient of the American Organization of Nurse Executives (AONE) Prism
Diversity award and was featured on the cover of the national magazine Nurse Leader, June 2013
issue.
Rich earned her bachelor of science in biology from Indiana University of Pennsylvania and
graduated summa cum laude with a bachelor of science in nursing in 1979 from Indiana University of Pennsylvania. She received a master of science and a doctorate degree in nursing administration from the University of Pittsburgh in 1984 and 1991, respectively. She has developed
numerous patient safety initiatives for healthcare systems globally. Rich is an expert in root cause
analysis and the development of corrective action plans for hospitals and state and federal agencies; she has provided consultation and expertise in patient safety and nursing leadership practice
worldwide.
Rich recently stepped aside as chief nurse executive and associate executive director at the University of Pennsylvania Medical Center, where she directed nursing practice at the 802-bed,
quaternary acute care academic center and 47 medical practice sites. Since 2002, she served as
a senior hospital administrator to implement the academic center’s missions, strategic plans,
patient care programs, nursing budgets, resource allocations, and operational plans. She is
an associate professor of nursing administration at the University of Pennsylvania School of
Nursing.

Contributing Authors xiii

Cheristi Cognetta Rieke, DNP, RN, is a nurse manager of acute and critical care nursing float
pool at the University of Minnesota Amplatz Children’s Hospital and the University of Minnesota
Medical Center, Fairview. She is a graduate of the doctor of nursing practice program in the specialty of Health Innovation and Leadership. Rieke was the principle investigator and boundaryspanning leader for the MyStory Initiative that was supported by the Picker Institute with an
Always Events Grant.
Juliette Schlucter, BS, is a patient- and family-centered care consultant at BRIDGEKEEPER
Consulting. For the past 22 years, Schlucter has worked with healthcare professionals in developing systems that support patient- and family-centered care. She came to her work initially
as a family advocate, following the diagnosis of cystic fibrosis of her son and daughter in 1991.
She has consulted on topics related to quality, safety, and education with numerous healthcare
organizations.
From 1995 through 2010, Schlucter provided leadership for patient- and family-centered care
at The Children’s Hospital of Philadelphia. While there, Schlucter created and served as lead
author of The Promise of Partnership, a toolkit used to teach best-practice behaviors for patientand family-centered care. She co-created the Family as Faculty program, established the Family
­Advisory Council, created the Family-Centered Intern program, and wrote Partners for Excellence, a workshop to teach parents about using healthcare resources effectively.
Since 1996, Schlucter has served as faculty to the Institute for Patient- and Family-Centered Care.
Gwen D. Sherwood, PhD, RN, FAAN, is professor and associate dean for academic affairs at the
University of North Carolina at Chapel Hill School of Nursing. Sherwood has a distinguished
record in advancing nursing education locally and globally. She served as co-investigator from
2005–2012 for the Robert Wood Johnson-funded Quality and Safety Education for Nurses
(QSEN) project to transform curricula to prepare nurses to be able to lead quality and safety as
part of their daily work. Her work to advance nursing education and nursing leadership derives
from her research on teamwork to improve patient safety, caring and spirituality, reflective practice, and interactive pedagogy. She is a graduate of Georgia Baptist College of Nursing, North
Carolina Central University, the University of North Carolina at Chapel Hill, and the University
of Texas at Austin. She is past president of the International Association for Human Caring and
past vice president of the Honor Society of Nursing, Sigma Theta Tau International. Among many
honors, she is a fellow in the American Academy of Nursing. Her most recent books include
AJN Book of the Year Quality and Safety Education: A Competency Approach for Nurses (Wiley-­
Blackwell, 2012) and Reflective Practice: Transforming Education to Improve Outcomes (Sigma
Theta Tau International, 2012).
Carol Taylor, PhD, RN, is a senior research scholar in the Kennedy Institute of Ethics at Georgetown University and a professor of nursing. Taylor has a PhD in philosophy with a concentration
in bioethics from Georgetown University and a master’s degree in medical-surgical nursing from
Catholic University. She chose doctoral work in philosophy with a concentration in bioethics
because of a passion to “make healthcare work” for those who need it. She now works closely with

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Person- and Family-Centered Care

healthcare professionals and leaders who are exploring the ethical dimensions of their practice.
She lectures internationally, writes on various issues in healthcare ethics, and serves as an ethics
consultant to systems and professional organizations. She is the author of Fundamentals of Nursing: The Art and Science of Nursing Care (Lippincott, Williams & Wilkins, 2013), which is now in
its seventh edition, and co-editor of Health and Human Flourishing: Religion, Medicine and Moral
Anthropology (Georgetown University Press, 2006) and the fourth edition of Case Studies in Nursing Ethics (Jones & Bartlett Learning, 2011).
Michael Trout, MA, is director of The Infant-Parent Institute, Inc. Trout completed his specialized training in infant psychiatry at the Child Development Project, University of Michigan
School of Medicine. He directs an institute engaged in research, clinical practice, and clinical training related to problems of attachment. He was founding president of the International
Association for Infant Mental Health, was on the charter editorial board of Infant Mental Health
Journal, served as vice president for the United States for the World Association for Infant Mental Health, and served on the board of directors for the International Society for Prenatal and
Perinatal Psychology and Medicine. He currently serves on the professional advisory board for
Attachment Parenting International. Trout is author or co-author of three books and producer of
15 documentary films and two meditation CDs. He was the 1984 recipient of the Selma Fraiberg
Award and the 2009 recipient of a Lifetime Achievement Award for his clinical work with infants
of loss and trauma.
Sarah Vittone, MSN, MA, RN, is assistant professor of nursing at the School of Nursing and
Health Studies at Georgetown University, where her teaching assignments include human growth
and development and healthcare ethics. Her clinical background is in pediatric nursing. Vittone
is an ethics consultant with the Center for Clinical Bioethics at Georgetown University, where
she works with interdisciplinary teams. She is also supported through grant funding by the
­Georgetown-Howard University Clinical and Translational Science Award for work in research
ethics, human protection, and advocacy.
Lance Wahlert, PhD, is assistant professor of medical ethics and health policy and director of the
master of bioethics program in the Perelman School of Medicine at the University of Pennsylvania. An historian of medicine, literary scholar, queer theorist, and disability scholar by training,
Wahlert is also core faculty member in gender, sexuality, and women’s studies at Penn and serves
as director of the Project on Bioethics, Sexuality, and Gender Identity, which has demarcated a
sub-field within bioethics that focuses on the intersections of LGBTQI health issues and medical ethics. Having been funded by the Wellcome Trust Centre for the History of Medicine, the
National Institutes of Health, and the Pew Foundation, Wahlert’s work on narrative medicine and
LGBTQI health has been featured in numerous peer-reviewed publications in the humanities and
biosciences, including his serving as guest editor of the Journal of Medical Humanities and the
Journal of Bioethical Inquiry.
Jennifer E. Wason, BA, MLIS, currently is project assistant to Shirley M. Moore, associate dean for research and the Edward J. and Louis Mellon Professor of Nursing at the Frances
Payne Bolton School of Nursing at Case Western Reserve University. She was formerly assistant

Contributing Authors xv

editor for Webster’s New World brand products at John Wiley and Sons and Houghton Mifflin
­Harcourt. She completed her master of library and information science degree at Kent State University and also attended Kenyon College.
Ann S. Williams, PhD, RN, CDE, is research associate professor at Case Western Reserve
­University. Williams has worked in community-based diabetes education since 1986, initially
as a clinician and more recently as a nurse scientist. She designs and conducts self-management
research, with particular interest in the self-management needs of persons with disabilities. Her
projects have included investigations of the accuracy of dosing with insulin pens by blind persons; the effectiveness of a novel method of nonvisual foot self-examination for people with visual
impairment; and the effectiveness of systems-based, community-based support groups for maintaining diabetes self-management behaviors for both fully sighted and visually impaired persons.
Williams was lead author of the Disabilities Position Statement for the American Association of
Diabetes Educators. She is also co-director of the FIND Lab at Case Western Reserve University,
which provides consultation to healthcare researchers promoting Full INclusion of Persons with
Disabilities in mainstream healthcare research.
David Wright, MPH, brings more than 20 years of experience in healthcare and hospital leadership to his role as senior vice president at GetWellNetwork. Prior to joining the organization,
Wright spent 13 years as lead marketing, strategy, and business development executive for the
Inova Health System, one of the largest integrated health systems on the Eastern Seaboard.
Wright’s role at GetWellNetwork centers on assisting clients in achieving their desired outcomes.
Greater Washington universities recognize Wright as an outstanding preceptor and adjunct
faculty member. He has received numerous awards for communications, advertising, public
relations, healthcare strategy, and marketing excellence, including the American Hospital Association’s (AHA) national marketing excellence award. Wright has a BS degree from Virginia Polytechnic Institute and State University and a master’s degree in public health with an emphasis in
healthcare administration from the University of California, Los Angeles.
Lynne Yancey, MD, is an associate professor and associate director of interprofessional education
at the University of Colorado School of Medicine. Yancey is an emergency physician and associate director for interprofessional education (IPE) at the Anschutz Medical Campus. She directs
two of the three portions of the IPE curriculum. The Clinical Transformations Program serves to
bridge the pre-clinical and clinical portions of the curriculum through interprofessional simulation experiences coupled with debriefs by trained facilitators. The Clinical Integrations Program
serves as the capstone of the IPE curriculum, where students apply their knowledge of team function and communication to the real world of patient care.
Prior to joining the IPE team, Yancey created the first-ever interprofessional simulation experience within the School of Medicine and served as medical director of the Center for Advancing
Professional Excellence, where she supervised development of teaching curriculum and evaluation modules using simulation and standardized patients for multiple healthcare professional
education programs. Before entering academic medicine, she learned firsthand the importance of
highly functioning teams as an aircrew member and flight surgeon in the U.S. Air Force.

Table of Contents
About the Authors.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . vii
Contributing Authors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . viii
Foreword. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xxvii
Introduction.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xxix

Part I: Person- and Family-Centered Care—Setting the Scene
Chapter 1: The Landscape for Nurturing Person- and Family-Centered Care. . . 1
Definition of Person- and Family-Centered Care (P&FCC). . . . . . . . . . . . . . . . . . . . 2
Understanding Societal Factors That Affect P&FCC.. . . . . . . . . . . . . . . . . . . . . . . . . . . 3
The Medical-Industrial Complex. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
A Widening Income Gap. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Social Values. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Consumerism. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
Time. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Incivility. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Understanding the Healthcare-Related Factors That Affect P&FCC. . . . . . . . . . . . 8
The Medical Model of Healthcare Delivery. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Mismatch Between What Providers Believe and What Patients Want.. . . . . . 10
Professional Autonomy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Technology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
The Education of Health Professionals. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Financing of Healthcare. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Chapter 2: Overview and History of Person- and Family-Centered Care.. . . . . . . 19
An Overview of Person- and Family‑Centered Care. . . . . . . . . . . . . . . . . . . . . . . . . .
History of Person- and Family-Centered Care.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Demonstrated Outcomes of Person- and Family‑Centered Care .. . . . . . . . . . . . .
Person Outcomes.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Financial Outcomes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Family Outcomes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Myths Related to Person- and Family‑Centered Care. . . . . . . . . . . . . . . . . . . . . . . . .
Standards and Regulations: A Stimulus for Person- and
Family-Centered Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Competencies Necessary for Delivering
Person‑ and Family-Centered Nursing Care . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

20
23
24
25
25
26
26
28
30
32

Table of Contents xvii

Chapter 3: A Patient’s Perspective on Patient- and Family-Centered Care.. . . . . . 35
A Patient’s Perspective. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Reorganizing Healthcare to Become Patient- and Family-Centered. . . . . . . . . . .
What Are Our Responsibilities for Our Healthcare?. . . . . . . . . . . . . . . . . . . . . . . .
How Are We Responding to the Need to Participate More Fully in
Our Care?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
How Can Healthcare Be Organized to Support Patients’ and Families’
Active and Knowledgeable Participation in Our Care?. . . . . . . . . . . . . . . . . . .
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

35
36
37
38
39
41

Chapter 4: Avoiding the Dark Sides of Patient- and Family-Centered Care. . . . . 43
The Dark Sides of Leadership.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Making Patient-Centered Commitments Without Planning. . . . . . . . . . . . . . . .
Reinforcing Misperceptions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Avoiding the Dark Sides of Leadership. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
The Dark Sides of the Patient/Family Partnership. . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Doing Things to/for Patients and Families Instead of in Partnership. . . . . . . .
Inappropriate Transfer of Responsibility. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Avoiding the Dark Sides of the Patient/Family Partnership. . . . . . . . . . . . . . . . .
The Dark Sides of Staff Engagement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Dismissing Staff Needs. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Creating the Expectation That the Patient Is Always Right.. . . . . . . . . . . . . . . . .
Avoiding the Dark Sides of Staff Engagement.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
The Dark Sides of Patient-Centered Data Use .. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Losing Sight of the Goal and Chasing Scores. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Demoralizing Staff. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Avoiding the Dark Sides of Data Use and Performance Improvement. . . . . . .
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

44
45
46
47
48
48
50
50
51
52
53
54
54
55
55
56
56

Chapter 5: The “Difficult” Patient Reconceived.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59
The Conventional View of the “Difficult” Patient. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
The “Difficult” Patient Reconceived. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Ethical Obligations to the “Difficult” Patient. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
The “Difficult” Patient and the Role of the Ethics Consultation Service.. . . . . . .
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

60
62
64
66
68

Chapter 6: A Global View of Person- and Family-Centered Care .. . . . . . . . . . . . . . . 71
A Global Concept of Patient- and Family-Centered Care . . . . . . . . . . . . . . . . . . . . .
A Global Definition of P&FCC. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Components of P&FCC. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Stakeholders in P&FCC. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
International Perspectives on P&FCC . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
International Alliance of Patients’ Organizations.. . . . . . . . . . . . . . . . . . . . . . . . . .
The World Health Organization. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

72
72
74
76
76
77
78

xviii

Person- and Family-Centered Care

The Pan American Health Organization. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Institute for Healthcare Improvement. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
International Council of Nurses. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Patients’ Experiences With Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Examples of P&FCC in Other Countries. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Palestine: Family Involvement in Care in Gaza Hospital. . . . . . . . . . . . . . . . . . .
Sweden. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Australia.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
The Democratic Republic of the Congo (DRC). . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Uganda. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Somalia. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Interventions to Promote P&FCC. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

80
80
81
82
84
85
87
87
88
88
88
89
92

Part II: Models for Person- and Family-Centered Care
Chapter 7: Patient Engagement and Activation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95
What Is Patient Engagement?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96
Why Is Patient Engagement Important?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97
The Current State of Patient Engagement.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 100
The Influence of Engagement on Patient Outcomes. . . . . . . . . . . . . . . . . . . . . . . . . . 100
Patient Activation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101
Focus of Research. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 102
Patient Engagement and Technology. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103
Interactive Patient Care Technology: Improving Patient Engagement. . . . . . 103
Interactive Patient Care Technology: Advancing Nursing Practice. . . . . . . . . 106
Nursing’s Role in Patient Engagement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106
Barriers and Challenges to Increasing Patient Engagement.. . . . . . . . . . . . . . . . . . 108
Patient Engagement and Population Health. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 109
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110

Chapter 8: Cultivating Mindful and Compassionate Connections. . . . . . . . . . . . . . 113
Relationship-Based Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Human Caring Research and Theory . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Knowing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Being With.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Doing For. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Enabling. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Maintaining Belief. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Attunement and Human Attachment.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
The Therapeutic Relationship . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Presence Through Attunement. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Wondering. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Following. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

115
117
118
118
118
118
118
119
120
121
121
122

Table of Contents xix

Holding. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Applications in the Field . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Q&A: Perceiving a Family Member as Aggressive or Controlling.. . . . . . . . . .
Q&A: Staying Compassionate With Patients Suffering From
Medical Issues Related to Alcoholism. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

122
123
123
125
126

Chapter 9: Hallmarks of a Culture of Patient- and Family-Centered
Care in the Care Setting. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 129
Reconceptualizing Hospital Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Realigning Organizational Philosophy and Operations.. . . . . . . . . . . . . . . . . . . . . .
Education and Commitment of Providers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Patient Engagement: Active Agents in the Hospital Experience. . . . . . . . . . . . . .
Exemplar Models of Care.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Institute for Healthcare Improvement. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Institute for Patient- and Family-Centered Care . . . . . . . . . . . . . . . . . . . . . . . . . .
The Picker Institute . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
The Planetree Model . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Changing the Culture: Patient-Centered Approaches to Encourage
Patient and Family Engagement. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Reframing Hospital Processes to Establish a Culture of P&FCC.. . . . . . . . . . .
Resources to Help Change the Culture. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Putting It Together: Hallmarks of P&FCC. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Admission . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Interprofessional Patient Rounds . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Family Meetings. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Flexible Schedules. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Patient-Directed Visitation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Patient/Family-Initiated Rapid Response Teams. . . . . . . . . . . . . . . . . . . . . . . . . .
Spiritual Care. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Respectful Partnerships.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Nurse-to-Nurse Handoffs (Handovers).. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Coordinating Care in Ancillary Departments. . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Discharge Planning. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Healing Environment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Access to Nutrition Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Information Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Working With Patient and Family Advisors. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Conclusion. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

130
131
133
134
135
135
136
136
137
141
141
142
142
143
144
144
144
145
146
146
146
146
147
147
147
147
148
148
148

Chapter 10: Family Systems Theory. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 151
Systems Theory.. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Family Systems Theory. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Boundary. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
Differentiation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

152
153
154
155

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