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i
Promoting Self-Management
of Chronic Health Conditions
ii
iii
Promoting Self-Management
of Chronic Health Conditions
Theories and Practice
EDITED BY
ERIN MARTZ
1
iv
1
Oxford University Press is a department of the University of Oxford. It furthers
the University’s objective of excellence in research, scholarship, and education
by publishing worldwide. Oxford is a registered trade mark of Oxford University
Press in the UK and certain other countries.
9 8 7 6 5 4 3 2 1
Printed by Sheridan Books, Inc., United States of America
v
CONTENTS
vi Contents
Index 521
vi
Erin Martz has a PhD in Rehabilitation Education and Research and is a Certified
Rehabilitation Counselor. She has focused on research coping with and adapting
to chronic health conditions and disabilities for the past 20 years. She is a 2017
Fulbright Research Fellow for the U.S. Department of State, works as a research
investigator for the U.S. Department of Veterans Affairs, is an assistant professor
in the Department of Otolaryngology, Oregon Health and Science University, and
runs her own business called Rehability.
vi
ix
Promoting Self-Management
of Chronic Health Conditions
xvi
1
Introduction
Why Study Self-Management?
ERIN MARTZ ■
For decades, the World Health Organization (WHO; 1948) has defined health
as “a state of complete physical, mental and social well-being and not merely the
absence of disease or infirmity” (p. 1). This definition advanced the concept of
health in a more positive direction, away from the focus on eliminating diseases.
However, Huber and colleagues (2011) pointed out that the WHO’s definition
needs updating because of its high standard of a “state of complete physical, men-
tal and social well-being,” which may not be possible for many people who have
chronic health conditions. Huber and colleagues proposed a fundamental shift in
the definition of health, moving from the WHO’s idealistic definition to a more
flexible, practical, and responsive definition of health as being able to adapt and
self-manage in the context of chronic health conditions. This shift represents an
ideal of achieving “complete well-being” to a more reality-based acknowledge-
ment that many people have to deal with one or more chronic health conditions
in their lifetimes—and that chronic conditions do not necessarily signify poor
health or well-being.
The fundamental goal of the present book is to elaborate on both the theo-
ries and the practices that can help individuals with chronic health conditions
to become as independent as possible by self-managing their chronic health
2
conditions. Self-management has been defined in many ways (see chapter 2), but,
fundamentally, it involves individuals with health conditions taking responsibil-
ity for managing their symptoms to the extent that is possible, while collaborating
with healthcare professionals. The purpose of this book is to investigate the ways
that healthcare providers can promote self-management among individuals with
chronic health conditions.
The topics discussed in this book include reviews of theoretical models and
research on condition-specific, empirically based interventions that promote the
self-management of specific chronic health conditions among the adult popu-
lation. This introductory chapter briefly covers the purpose of this book, what
terms are (and are not) used in this book, and the structure of the book. But first,
this chapter begins with a discussion of why self-management is an important
topic in today’s healthcare environment.
There are three primary reasons why self-management should be a topic of scien-
tific research and consideration by healthcare providers and healthcare systems.
Introduction3
21.8% in 2001. They found higher prevalence rates of MCC among older adults.
Ward, Schiller, and Goodman (2014) analyzed the 2012 NHIS dataset and found
similar results: approximately half of the US non-institutionalized population
reported one of 10 chronic conditions, and 25.5% of them had MCC (i.e., two or
more chronic conditions). Because these analyses of the NHIS dataset included
only 10 conditions and did not include mental health conditions, Ward et al.
acknowledged that their calculations likely underestimated the true prevalence
of MCC.
The data cited in the previous two paragraphs highlight one reason why it is
important to focus on self-management: the occurrence of chronic health con-
ditions is increasing among the general population. Yet the increase of chronic
health conditions is not the only important indicator of the need to focus on
promoting self-management among chronic health conditions. The urgent need
to promote self-management arises from the danger of untreated or unmanaged
chronic health conditions. Seven of the 10 leading causes of death in the United
States are chronic health conditions (heart disease, cancer, chronic lower res-
piratory diseases, cerebrovascular diseases, Alzheimer’s disease, diabetes mel-
litus, and nephritis/nephrotic syndrome/nephrosis; National Center for Health
Statistics, 2015).
The annual cost of chronic health conditions to the US economy has been calcu-
lated not only due to healthcare expenses but due to reduced productivity. DeVol
and Bedroussian (2007) analyzed the impact of seven chronic health conditions
(cancer, diabetes, hypertension, stroke, heart disease, pulmonary conditions, and
mental health conditions) and found that it was over $1.3 trillion annually in the
U.S., based on yearly estimates of $1.1 trillion of lost productivity and $277 billion
for treatment.
Introduction5
of this book’s content can help healthcare professionals to better understand and
facilitate self-management among the individuals with chronic health conditions
whom they assist.
This book has a threefold aim: the first aim is to help healthcare profession-
als to better promote self-management of chronic health conditions by reviewing
theoretical models and research on condition-specific, empirically based inter-
ventions. The second aim is to help healthcare professionals understand what
condition-specific knowledge should be taught to individuals (e.g., in educational
interventions), in order to empower them to solve problems related to their spe-
cific chronic health condition. The third aim is to help healthcare professionals
better understand the range of emotional reactions that can occur at the onset
of specific chronic health conditions, in order for professionals to be aware of
possible needed areas of intervention and what scientific studies indicate about
practices that promote better coping with chronic health conditions.
In summary, this book focuses on mapping out sets of skills, knowledge, and
programs that can be used to help facilitate the self-management of a range of
chronic health conditions. The models of self-management that are discussed
in this book suggest best practices that facilitate the collaboration of healthcare
professionals and individuals with chronic health conditions, while empowering
the latter to adopt skills for solving problems and handling emotional reactions
related to having a chronic health condition.
Gradual onset; unfolds over time; multivariate causation, changing over time;
undulating course, diagnosis often uncertain; prognosis obscure … no cure;
management over time necessary; uncertainty pervasive … continuous med-
ication use; behavior change (e.g., diet, exercise, leisure); changed social and
work circumstances; emotional distress. (Holman & Lorig, 2004, p. 240)
Introduction7
This book provides both theoretical and empirically-based approaches. The sec-
ond chapter of this book (“Defining Self-Management on the Individual Level”)
discusses a variety of ways of defining self-management. One model is based on a
tripartite approach, which includes three areas: (a) the collaboration of healthcare
providers in helping individuals manage symptoms of their chronic health con-
ditions, (b) condition-specific education about the typical symptoms and advice
about the micro-decisions and actions that the individual with the chronic health
condition can take when those symptoms occur, and (c) the coping skills that
can be facilitated to address the emotional reactions and stress related to having
a chronic health condition. Each chapter in Part II of this book covers these three
areas of self-management.
Part I of this book contains chapters that provide theoretical frameworks for
promoting behavioral change and health outcomes that are tailored toward help-
ing individuals with chronic health conditions. Several chapters in Part I focus on
ideas to facilitate the psychological strength of individuals to take on the respon-
sibility for self-managing their conditions.
Part II of this book contains chapters on the self-management of specific chronic
health conditions. These chapters examine published empirical studies, including
both basic research and clinical interventions related to managing chronic health
conditions. Part II chapters also discuss those programs and interventions that
help individuals learn how to make micro-decisions related to their conditions,
based on education about the condition and its treatment.
Chapters in Part III cover issues related to the intersection of technology and
self-management practices, which healthcare professionals can utilize to help indi-
viduals with chronic health conditions. The book concludes with a chapter on sys-
temic models of self-management and its implementation in healthcare systems.
This book has been written to provide a professional resource on self-
management of chronic health conditions for healthcare providers, but healthcare
recipients may also find this book useful. Ultimately, it is up to healthcare profes-
sionals to utilize and implement this knowledge to provide compassionate and
effective services to healthcare recipients. Those who have the challenge of living
with chronic health conditions can benefit from having healthcare providers who
can suggest ideas about self-managing their conditions or provide referrals to
evidence-based, condition-specific interventions. As the rates of chronic health
conditions continue to increase worldwide, self-management concepts and
8
ACKNOWLEDGMENTS
REFERENCES
Anderson, G. F. (2010). Chronic care: Making the case for ongoing care. Princeton,
NJ: Robert Wood Johnson Foundation.
Busse, R., Blümel, M., Scheller-Kreinsen, D., & Zentner, A. (2010). Tackling chronic
disease in Europe: Strategies, interventions and challenges. Observatory Studies Series
20. Copenhagen: WHO Regional Office Europe.
Corbin, J. M., & Strauss, A. (1988). Unending work and care: Managing chronic illness at
home. San Francisco, CA: Jossey-Bass.
Department of Health and Human Services. (2012). A framework to support self-
management. Retrieved from https://www.dhhs.tas.gov.au/__data/assets/pdf_file/
0019/133480/19122012_FINAL_Self_Management_Framework.pdf
DeVol, R., Bedroussian, A., Charuworn, A., Chatterjee, A., Kim, I. K., Kim, S., &
Klowden, K. (2007). An unhealthy America: The economic burden of chronic disease.
Retrieved from https://www.sophe.org/Sophe/PDF/chronic_disease_report.pdf
Glasgow, R. E., Davis, C. L., Funnell, M. M., & Beck, A. (2003). Implementing practical
interventions to support chronic illness self-management. Joint Commission Journal
on Quality and Patient Safety, 29(11), 563–574.
Holman, H., & Lorig, K. (2004). Patient self-management: A key to effectiveness and
efficiency in care of chronic disease. Public Health Reports, 119(3), 239–243.
Huber, M., Knottnerus, J. A., Green, L., van der Horst, H., Jadad, A. R., Kromhout, D., . . .
Schnabel, P. (2011). How should we define health? BMJ, 343, 235–237.
Institute of Medicine. (2012). Living well with chronic illness: A call for public health action.
Retrieved from http://www.nationalacademies.org/hmd/Reports/2012/Living-Well-
with-Chronic-Illness.aspx
Livneh, H., & Parker, R. M. (2005). Psychological adaptation to disability perspectives
from chaos and complexity theory. Rehabilitation Counseling Bulletin, 49(1), 17–28.
Martin, A. B., Hartman, M., Benson, J., Catlin, A., & National Health Expenditure
Accounts Team. (2016). National health spending in 2014: Faster growth driven by
coverage expansion and prescription drug spending. Health Affairs, 35(1), 150–160.
National Center for Health Statistics, Centers for Disease Control and Prevention. (Eds.).
(2015). Health, United States, 2013. Washington, DC: Government Printing Office.
Ward, B. W., & Schiller, J. S. (2012). Prevalence of multiple chronic conditions among
US adults: Estimates from the National Health Interview Survey, 2010. Preventing
Chronic Disease, 10, E65–E65.
Ward, B. W., Schiller, J. S., & Goodman, R. A. (2014). Multiple chronic conditions among
US adults: A 2012 update. Preventing Chronic Disease, 11, E62.
9
Introduction9
Defining Self-Management
on the Individual Level
ERIN MARTZ ■
about having a health condition, and one’s motivation for implementing health-
care advice given by healthcare professionals). This self-management process is
an imperfect one and does not always result in a healthy “equation.”
On one side of the self-management equation, individuals have chronic health
conditions that they have to manage on a daily basis. This responsibility is no easy
task. Most of the burden of self-managing a chronic health condition is on the
individuals with chronic conditions because they have to make decisions every
day about how to implement healthcare advice for fluctuating symptoms and in
new circumstances. These are the micro-decisions (Bodenheimer et al., 2002) that
they must make throughout the day. They have to learn the necessary condition-
specific knowledge (e.g., how to use insulin to manage diabetes or how to reduce
seizure frequency with epilepsy) and understand the range of symptoms related
to their specific chronic health condition, what those symptoms may indicate, and
what actions they should take to address those symptoms. These individuals alone
get to micro-manage their health. Individuals are “ultimately the primary caregiv-
ers” for themselves (Wagner et al., 2005, p. S-10). This unending responsibility can
be daunting for some with chronic health conditions.
On the other side of the self-management equation, chronic health condi-
tions require that healthcare providers make macro-decisions about how to treat
the chronic condition by creating the framework of how to care for the health
condition (e.g., a treatment plan). Healthcare providers make the diagnoses and
give healthcare advice (e.g., what actions the individual needs to take to treat the
chronic health condition), communicating to individuals to help them under-
stand the framework of the treatment plan. These collaborative partnerships
may involve shared decision-making between healthcare recipient and provider
(Edwards & Elwyn, 2009). Yet, ultimately, it is the individual who must manage
the daily, hourly, and even minute-by-minute implementation of that plan.
Forming a collaborative partnership is no easy task for healthcare profes-
sionals, in view that the self-management approach is a “complex intervention”
(Trappenburg et al., 2013), reflecting that it is a strategy that has numerous com-
ponents with varying degrees of complexity. Any process that has many “moving
pieces” can be complicated to implement, and even more so when the human
component of independent-thinking individuals is added. Even though health-
care professionals make the macro-decisions about how to treat a chronic health
condition, they have no real control over the behavior of individuals to whom
they provide self-management advice. Considering all these factors, it can be
challenging for healthcare professionals to motivate individuals to implement
the treatment plans, especially if the healthcare providers do not understand self-
management approaches.
PERSPECTIVES ON SELF-MANAGEMENT
Self-Managers
Clark and colleagues (1991) cautioned that self-management involves more than
just condition-related education; it involves behavioral integration of that knowl-
edge: “Becoming a better self-manager is linked less to learning facts about a
particular condition and more to learning how to set goals, organize resources
(including psychic resources), and implement problem-solving strategies” (p. 20).
Their views reflected a growing recognition that in the context of chronic con-
dition healthcare, active individuals were needed to help manage the condition
outside of the doctor’s office. Thus the view of the healthcare recipient as a passive
individual who is told what to do by the physician was becoming a dated concept
when treating individuals with chronic health conditions. According to Jerant,
von Friederichs-Fitzwater, and Moore (2005), passive self-managers had the fol-
lowing characteristics: (a) deferring to healthcare providers, (b) feeling forced to
abandon valued roles in life, and (c) using ineffective forms of emotional man-
agement (i.e., coping). In contrast, active self-managers displayed the following
characteristics (a) collaborating with healthcare providers, (b) striving to main-
tain valued roles in life, and (c) using consciously chosen coping strategies (Jerant
et al., 2005).
The Health Council of Canada (2012) proposed that “good self-managers” are
individuals who know the parameters of their responsibilities and who are “actively
engaged in their care and are able to make decisions that support their health,
Another random document with
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