chronic illness - impact and intervention 8th ed. - i. lubkin, p. larsen (jones and bartlett, 2013) ww

CHRONIC
ILLNESS
IMPACT AND INTERVENTION
EIGHTH EDITION
EDITED BY
Ilene Morof Lubkin, MS, RN, CGNP
Professor Emeritus
California State University
Hayward, California
Pamala D. Larsen, PhD, RN, CRRN, FNGNA
Associate Dean for Academic A airs and Professor
Fay W. Whitney School of Nursing
University of Wyoming
Laramie, Wyoming
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Library of Congress Cataloging-in-Publication Data
Chronic illness : impact and intervention / [edited by] Ilene M. Lubkin and Pamala D. Larsen.—8th ed.
p. ; cm.
Includes bibliographical references and index.
ISBN-13: 978-0-7637-9966-3
ISBN-10: 0-7637-9966-1
I. Lubkin, Ilene Morof, 1928-2005. II. Larsen, Pamala D., 1947-

[DNLM: 1. Chronic Disease—psychology. 2. Professional-Family Relations. 3. Professional-Patient
Relations. WT 500]
LC classifi cation not assigned
616′.044—dc23
2011029659
6048
Printed in the United States of America
15 14 13 12 11 10 9 8 7 6 5 4 3 2 1
To Randy, as we continue the chronic illness journey together
This text was developed by and originated with Ilene Morof Lubkin in
1986 and was the fi rst work of its kind to address the psychosocial concepts
of chronic illness. Pamala Larsen joined the project in its fourth edition in
1998. It remains a landmark work in the healthcare fi eld.

Contents
Preface xiii
Contributors xv
Part I Impact of the Disease 1
1
Chronicity 3
Pamala D. Larsen
Introduction 3
Impact of Chronic Illness 6
Interventions 13
Summary 20
References 20
2
The Illness Experience 23
Pamala D. Larsen
Introduction 23

Impact and Issues Related to Illness Behavior 29
Interventions 35
Outcomes 41
References 42
vi CONTENTS
3
Stigma 47
Diane L. Stuenkel and Vivian K. Wong
Introduction 47
Theoretical Frameworks: Stigma, Social Identity, and Labeling Theory 47
Impact of Stigma 55
Interventions: Coping with Stigma or Reducing Stigma 61
Outcomes 70
References 72
4
Adaptation 75
Pamala D. Larsen and Faye I. Hummel
Introduction 75
Impact 76
Overview of Coping 86
Interventions 88
Summary 91
References 92
5
Social Isolation 97
Diana Luskin Biordi and Nicholas R. Nicholson
Introduction 97
Problems and Issues of Social Isolation 101
Interventions: Counteracting Social Isolation 113
Outcomes 125

References 126
6
Body Image 133
Diana Luskin Biordi and Patricia McCann Galon
Introduction 133
Contents vii
Assessment of Body Image 144
Body Image Issues Important to Chronic Illness 146
Interventions 150
Outcomes 155
References 156
7
Uncertainty 161
Faye I. Hummel
Introduction 161
Theoretical Underpinnings of Uncertainty 166
Interventions 172
Outcomes 178
References 179
8
Quality of Life 183
Victoria Schirm
Introduction 183
Conceptualizing and Measuring Quality of Life 184
Evidence-Based Interventions to Promote Quality of Life 192
Outcomes 202
References 204
9
Adherence 207
Jill Berg, Lorraine S. Evangelista, Donna Carruthers, and

Jacqueline M. Dunbar-Jacob
Introduction 207
Issues Related to Examining Adherence Behavior 217
Interventions to Enhance Adherence Behavior 223
References 232
viii CONTENTS
Part II Impact on the Client and Family 243
10
Family Caregiving 245
Linda L. Pierce and Barbara J. Lutz
Introduction 245
Problems and Issues 252
Interventions 262
Care Recipient, Caregiver, and Caregiving System Outcomes 276
References 281
11
Sexuality 289
Margaret Chamberlain Wilmoth
Introduction 289
Sexuality and Chronic Illness 294
Interventions 306
Outcomes 309
References 310
12
Powerlessness 315
Faye I. Hummel
Introduction 315
Problems and Issues Associated with Powerlessness 321
Interventions 327
Outcomes 335

References 337
13
Culture and Cultural Competence 343
Pamala D. Larsen and Sonya R. Hardin
Introduction 343
Contents ix
Impact 347
Interventions 354
Outcomes 363
References 365
14
Self-Care 369
Judith E. Hertz
Introduction 369
Key Issues and Frameworks for Viewing Self-Care Within Chronic Illness 370
Key Issues in Promoting Self-Care in Persons with Chronic Illness 380
Interventions 382
Outcomes 389
References 391
15
Client and Family Education 395
Elaine T. Miller
Introduction 395
Influences on Teaching and Learning 403
Educational Interventions for the Client and Family 414
Summary and Conclusions 420
References 422
Part III Impact of the Healthcare Professional 427
16
Health Promotion 429

Alicia Huckstadt
Introduction 429
Issues and Impact 432
Interventions 443
x CONTENTS
Outcomes 450
References 452
17
APRNs in Chronic Illness Care 457
Ann Marie Hart
Introduction 457
APRN Core Competencies in Chronic Illness Care 460
Contributions of APRNs in Chronic Illness Care 472
Improving APRN-Delivered Chronic Illness Care 472
Summary and Conclusions 479
References 480
18
Complementary and Alternative Therapies 485
Pamala D. Larsen
Introduction 485
Cancer 493
Issues 495
Interventions 503
Outcomes 505
Acknowledgment 505
References 506
Part IV Impact of the System 511
19
Models of Care 513
Pamala D. Larsen

Introduction 513
Impact 514
Contents xi
Interventions 514
Outcomes 527
References 528
20
Home Health Care 533
Cynthia S. Jacelon
Introduction 533
Theoretical Frameworks for Management of Chronic Illness
in Home Care 536
Interventions 542
Outcomes 551
References 556
21
Long-Term Care 561
Susan J. Barnes and Kristen L. Mauk
Introduction 561
Problems and Issues in Long-Term Care 569
Interventions 577
Outcomes 589
References 591
22
Palliative Care 597
Barbara M. Raudonis
Introduction 597
Problems and Barriers Related to Palliative Care 607
Interventions 608
Outcomes 617

References 620
xii CONTENTS
23
Health Policy 627
Anne Deutsch and Betty Smith-Campbell
Introduction 627
Problems and Key Issues 628
Interventions: Politics, A Caring Action 636
Outcomes 642
References 644
24
Rehabilitation 647
Kristen L. Mauk
Introduction 647
Rehabilitation Issues and Challenges 660
Interventions 668
Outcome Measurement and Performance Improvement 681
References 683
Index 693
Preface
A VIEW FROM THAT OTHER PLACE
The first draft of the preface for this edition covered the usual topics—our expensive healthcare
system providing limited access to some Americans, falling behind in life expectancy in the world
and also in infant mortality, and a plea that we can’t keep putting our head in the sand merely hop-
ing that something will change, along with my usual plea that everyone with chronic illness needs a
nurse as a case manager. Yes, it was very preachy, but how I feel.
However, during this past year my husband of 42 years was diagnosed with esophageal cancer.
As Susan Sontag (1988) notes, “illness is the night-side of life, there is a kingdom of the well and a
kingdom of the sick, and that eventually everyone is obligated, at least for a spell, to identify our-
selves as citizens of that other place” (p. 3). My husband and I are now in “that other place”—the

land of chronic illness. One would think that being a registered nurse for 42 years and caring for
those with chronic illness in many settings would have made me an expert in this land. This is my
area; I teach about it, know about it, and edit this textbook. This is “me.” However, I didn’t realize
how little I knew about the kingdom of the sick. In the past I was confident that I knew what my
patients/clients and families were going through. I was supportive. I was empathetic. I was working
with them for optimal wellness. But I didn’t know.
From the day of diagnosis, the day before Thanksgiving 2010 (funny, I don’t even remember
the date, just the relationship with Thanksgiving), you think your loved one’s tests have been mixed
up with someone else’s, that it must be a mistake. These things happen to other people. You just had
Christmas family pictures taken the prior weekend with all 11 grandchildren……you are happy,
healthy, alive. This diagnosis isn’t real. But it soon becomes your reality.
I think of the chapters in this book and how my husband and I can now relate to most of them.
I’ve added a few quotes of my own in some of the chapters, but in reality, I could have added a thou-
sand quotes about our experience. Luckily my husband’s hospitalizations, surgeries, chemotherapy,
radiation, and care have been in two Magnet hospitals. The nursing and medical care have been fan-
tastic. We’ve been actively involved in care decisions and have never felt like outsiders. But that
care doesn’t touch “that other place.”
xiv PREFACE
As nurses we advocate that one’s illness shouldn’t take over an individual’s life, that illness is
just part of who the person is. A lofty goal, but the reality is that your life is often your illness. They
are one and the same. Your life revolves around how many times you’ve vomited today; endless doc-
tor appointments; electrolytes are off, need a bag of IV fluids and some potassium as an out-patient;
titrating nocturnal jejunostomy feedings with oral intake; IV antibiotics for an infection of some
kind; fatigue and weakness; and iatrogenic effects of treatment, to name just a few of the new addi-
tions to daily life. Hospitalizations become a blur as to what happened when. Some things, however,
are permanently recorded in my brain, such as the night my husband had a cardiac arrest in ICU.
Then the thought surfaces that none of this treatment will make any difference, and you talk, again,
about advance directives, wills, and so on.
That other place. I didn’t know until now.
Pamala D. Larsen

REFERENCES
Sontag, S. (1988). Illness as metaphor. Toronto, Canada: Collins Publishers.
Contributors
Susan J. Barnes, PhD, RN, CNE
Associate Professor and Chair
Transformative and Global Education
Kramer School of Nursing
Oklahoma City University
Oklahoma City, Oklahoma
Jill Berg, PhD, RN
Associate Professor
Program in Nursing Science
University of California, Irvine
Irvine, California
Diana Luskin Biordi, PhD, RN, FAAN
Associate Dean
Nursing Research and Scholarship
College of Nursing
The University of Akron
Akron, Ohio
Donna Carruthers, PhD, RN
Assistant Professor
School of Nursing
University of Pittsburgh
Pittsburgh, Pennsylvania
xvi CONTRIBUTORS
Anne Deutsch, PhD, RN, CRRN
Clinical Research Scientist
Rehabilitation Institute of Chicago and
Research Assistant Professor

Department of Physical Medicine and Rehabilitation &
Institute for Healthcare Studies
Northwestern University Feinberg School of Medicine
Chicago, Illinois
Jacqueline M. Dunbar-Jacob, PhD, RN, FAAN
Dean, School of Nursing
Professor, Nursing, Psychology, Epidemiology and Occupational Therapy
Director, Center for Research in Chronic Disorders
University of Pittsburgh
Pittsburgh, Pennsylvania
Lorraine S. Evangelista, PhD, RN
Associate Professor
Program in Nursing Science
University of California, Irvine
Irvine, California
Patricia McCann Galon, PhD, CNS
Associate Professor
College of Nursing
The University of Akron
Akron, Ohio
Sonya R. Hardin, PhD, RN, CCRN, NP-C
Professor
School of Nursing
University of North Carolina, Charlotte
Charlotte, North Carolina
Ann Marie Hart, PhD, APRN-BC, FNP
Associate Professor
Fay W. Whitney School of Nursing
University of Wyoming
Laramie, Wyoming

Contributors xvii
Judith E. Hertz, PhD, RN, FNGNA
Associate Professor
School of Nursing and Health Studies
Northern Illinois University
DeKalb, Illinois
Alicia Huckstadt, PhD, RN, APRN, FNP-BC, GNP-BC
Professor and Director, DNP Program
School of Nursing
Wichita State University
Wichita, Kansas
Faye I. Hummel, PhD, RN, CTN
Professor
School of Nursing
University of Northern Colorado
Greeley, Colorado
Cynthia S. Jacelon, PhD, RN-BC, CRRN, FAAN
Associate Professor
Director of Departmental Honors
School of Nursing
University of Massachusetts, Amherst
Amherst, Massachusetts
Pamala D. Larsen, PhD, CRRN, FNGNA
Associate Dean for Academic Affairs, Professor
Fay W. Whitney School of Nursing
University of Wyoming
Laramie, Wyoming
Barbara J. Lutz, PhD, RN, CRRN, FAHA
Associate Professor
College of Nursing

University of Florida
Gainesville, Florida
xviii CONTRIBUTORS
Kristin L. Mauk, PhD, DNP, RN, CRRN, GCNS-BC, GNP-BC, FAAN
Professor of Nursing
Kreft Endowed Chair
Valparaiso University
Valparaiso, Indiana
Elaine T. Miller, PhD, RN, CRRN, FAAN, FAHA
Professor of Nursing
Coordinator, Center for Aging with Dignity
College of Nursing
University of Cincinnati
Cincinnati, Ohio
Nicholas R. Nicholson, Jr., PhD, MPH, RN, PHCNS-BC
Postdoctoral Fellow
Geriatric Clinical Epidemiology and Aging-Related Research
Yale University School of Medicine
New Haven, Connecticut
Linda L. Pierce, PhD, RN, CNS, CRRN, FAHA, FAAN
Professor
College of Nursing
University of Toledo
Toledo, Ohio
Barbara M. Raudonis, PhD, RN, FNGNA, FPCN
Associate Professor
College of Nursing
University of Texas, Arlington
Arlington, Texas
Victoria Schirm, PhD, RN

Director of Nursing Research
Penn State Milton S. Hershey Medical Center
Hershey, Pennsylvania
Contributors xix
Betty Smith-Campbell, PhD, RN
Professor
School of Nursing
Wichita State University
Wichita, Kansas
Diane L. Stuenkel, EdD, RN
Professor
The Valley Foundation School of Nursing
San Jose State University
San Jose, California
Margaret Chamberlain Wilmoth, PhD, RN, MSS, FAAN
Professor
School of Nursing
University of North Carolina, Charlotte
Charlotte, North Carolina
Vivian K. Wong, PhD, RN
Associate Professor
The Valley Foundation School of Nursing
San Jose State University
San Jose, California

PA RT I
Impact of the Disease

INTRODUCTION
In 2005 it was estimated that there were

133 million individuals living with at least one
chronic disease (Centers for Disease Control
and Prevention [CDC], 2010a), and that 7 of
every 10 Americans who die each year—or
more than 1.7 million people—die of a chronic
disease. Chronic disease accounts for one-third
of the years of potential life lost before age 65.
The data that have quantified the costs from
chronic disease are quite sobering as well:
• The direct and indirect costs of diabetes
were $174 billion in 2007 (American
Diabetes Association, 2011).
• In 2010, the cost of heart disease and stroke
was $316.4 billion (CDC, 2010b).
• The direct cost of cancer care in 2010 was
$124 billion (National Cancer Institute,
2011).
• The medical costs of people with chronic
disease account for more than 75% of the
nation’s $2 trillion medical care costs each
year (CDC, 2008).
These facts indicate that chronic disease is the
nation’s greatest healthcare problem and
the number one driver of health care today. With
The prevalence of chronic disease worldwide is
similar if not greater than it is in the United
States. Chronic diseases are the leading cause of
death in the world, accounting for 60% of all
deaths worldwide (World Health Organization
[WHO], 2011). Twenty percent of chronic

disease deaths occur in high-income countries,
whereas the remaining 80% occur in low- and
middle-income countries, where most of the
world’s population resides (WHO, 2011).
There is a wide variety of conditions that
are considered chronic, and each condition
needs a diverse array of services to care for
affected individuals. For example, consider
clients with Alzheimer’s disease, cerebral
palsy, heart disease, acquired immunodefi-
ciency syndrome (AIDS), or spinal cord injury;
each of these clients has unique physical needs,
and each needs different services from a
healthcare system that is attuned to delivering
acute care.
The first baby boomers turned 65 in 2011,
and this event has focused increased attention
on the capabilities of the healthcare system. The
baby boomer generation, in particular, has been
vocal about the inability of the healthcare
system to meet current needs, let alone future
needs.
Chronicity
Pamala D. Larsen
CHAPTER 1
4 CHAPTER 1 / Chronicity
and by earlier detection of disease in general.
Living longer, however, leads to greater vulnera-
bility to the occurrence of accidents and disease
events that can become chronic in nature. The

client who may have died from a myocardial
infarction in earlier years now needs continuing
health care for heart failure. The cancer survivor
has healthcare needs related to the iatrogenic
results of life-saving treatment. The adolescent,
who is a quadriplegic because of an accident,
may live a relatively long life with our current
rehabilitation efforts, but needs continuous pre-
ventive and maintenance care from the health-
care system. Children with cystic fibrosis have
benefited from lung transplantation, but need
care for the rest of their lives. Therefore, many
previously fatal conditions, injuries, and diseases
have become chronic in nature.
Disease versus Illness
Although the terms, disease and illness, are often
used interchangeably, there is a distinct differ-
ence between them. Disease refers to the patho-
physiology of the condition, such as an alteration
in structure and function. Illness, on the other
hand, is the human experience of symptoms and
suffering, and refers to how the disease is per-
ceived, lived with, and responded to by individu-
als, their families, and their healthcare providers.
Although it is important to recognize the patho-
physiological process of a chronic disease, under-
standing the illness experience is essential to
providing holistic care.
I put my elbows on my knees and let my
forehead sink into my palms. I’m tired. Not

just tired . . . weary. My husband’s catheter
went AWOL at one in the morning, and
we’ve spent the rest of the night in the ER
(How many nights does that make now?
the aging population and the advanced technol-
ogies that assist clients in living longer lives, the
costs will only increase.
The influx of baby boomers into organiza-
tions such as AARP has distinctly flavored the
activities of that and other similar types of orga-
nizations. In addition, this new group of seniors
is the most ethnically and racially diverse of any
previous generation. This well educated,
consumer-driven generation wants to be knowl-
edgeable about their conditions and all treatment
options. They question their healthcare providers
and do not necessarily accept their healthcare
advice and treatment options.
In 2000, minorities represented 16% of
older American adults. By 2020 that percentage
will increase to 24% (Administration on Aging
[AOA], 2010). Unfortunately, the healthcare
disparities that we have seen in the past regard-
ing ethnic and racial groups are not decreasing,
but rather increasing. Three key themes emerged
from the 2009 National Health Disparities
Report: 1) disparities are common and lack of
health insurance is an important contributor; 2)
many disparities are not decreasing; and 3)
some disparities merit particular attention, espe-

cially care for cancer, heart failure, and pneu-
monia (Agency for Healthcare Research and
Quality [AHRQ], 2010a). How will the current
system or a future system cope with this diverse
group of seniors and their accompanying
chronic conditions?
Multiple factors have produced the increas-
ing number of individuals with chronic disease.
Developments in the fields of public health,
genetics, immunology, technology, and pharma-
cology have led to a significant decrease in mor-
tality from acute disease. Medical success has
contributed, in part, to the unprecedented growth
of chronic illness by extending life expectancy