Lubkin’s Chronic Illness 10th Edition,

(Ebook PDF)
Visit to download the full and correct content document:
https://ebookmass.com/product/lubkins-chronic-illness-10th-edition-ebook-pdf/
© Aljndr/Shutterstock
Preface
C
hronic Illness has reached a milestone
with this 10th edition. Ten editions of a
textbook is a tremendous achievement,
and I doubt that Ilene Lubkin ever imagined
the book would still be in print in 2017. The
first edition was written and edited by Ilene and
published by Jones & Bartlett Learning in 1986.
Of note in the first edition is the foreword by
Anselm Strauss, renowned sociologist, author,
and researcher, who wrote:
Ilene Lubkin’s book marks a new phase
in the growing recognition of chronic
illness as a major policy area. Awareness
of the prevalence of chronic illness has
increased during the past forty years, but
its full implications for training, care,
insurance, and health institutions are
not yet clear to health professionals or
the general public.
Strauss, 1986, p. v
Thirty-one years later, the United States is still
coming to grips with the reality of chronic ill-
ness. The implications that Strauss identified for
training, care, insurance, and health institutions
in 1986 remain pertinent today.
In her preface to the 1986 edition Ilene
expressed her vision for the book:
This text focuses on the many factors and
issues that influence the ways individuals
and families deal with chronic illnesses.
The emphasis is not on disease process or
specific disease management, since this
material is well covered by numerous
other sources. Although physiological
or psychological alterations initiate the
illness process, the sum of other factors has
more impact on an individual’s life than
does the disease process itself. Chronic
illnesses have a broad spectrum of social,
economic, and behavioral aspects. One
individual’s illness affects members of the
family and others, sometimes disrupting
the functioning of the individual or
family. Chronic illness often becomes a
family illness.
Lubkin, 1986, pp. vii–viii
Ilene was a very forward thinker. As health-
care professionals, we did not venture often into
the psychosocial realm of chronic disease in the
1980s. Oh, we danced around that theme, but
few books or articles addressed the issues head
on. Health care was focused on the physical
aspects of disease. As practitioners, there was
an awareness of the psychosocial dimensions
of chronic disease, but these concepts were
only marginally discussed. Ilene’s book was the
first time that I had read about the concepts
of stigma, social isolation, illness roles, and
so forth in any book. The book was validation
for many of us!
The first edition was 18 chapters in length
as compared with 24 chapters in the most cur-
rent editions. Eighteen contributors were listed
in the book, but their names were not attached
to a specific chapter until the second edition,
published in 1990. I would be remiss if I didn’t
list the chapters included in the first edition:
What Is Chronicity, Illness Trajectory, Illness
vii
viii Preface
Roles, Stigma, Altered Mobility, Quality of Life,
Compliance, The Family Caregiver, Body Image,
Sexuality, Change Agent, Teaching, Advocacy,
Research, Alternative Modalities, The Agency
Maze, Financial Impact, and Rehabilitation.
I want to salute the contributors to the first
edition: Brenda Bailey, Dorothy Blevins, Audrey
Bopp, Karna Bramble, Sheila Charlson, Mary
Curtin, Dr. Marie-Luise Friedmann, Eileen
Jackson, Katheliene Kohler, Dr. Karen Thornbury
La Buhn, Terri Neifing, Dr. Geri Neuberger,
Margene Nordstrom, Colleen Saylor, Barbara
Scheffer, Mary Therese Schweikert-Stary, Ann
Shank, and Cynthia Woods.
Colleagues often ask me, “How did you
become associated with Ilene and this book?”
The School of Nursing at the University of
Northern Colorado, where I was teaching in the
early 1990s, received a letter from Ilene asking
for authors for the proposed next edition. I
responded that I would write the rehabilitation
chapter in the third edition (published in 1995).
As a proposed fourth edition was looming,
Ilene corresponded with contributors, asking if
they would consider helping her edit the next
edition. As she would later tell me, I was the
only person who responded. Thus, Ilene’s and
my partnership began with the publication of
the fourth edition in 1998.
Ilene and I never met in person. We had long
phone conversations, and sent faxes of chapters
back and forth. Ilene was 19 years older than
I was, and although she loved her computer,
email wasn’t something she was fond of, and
Skype and FaceTime were still a long way in the
future. But our working relationship was strong
because we shared a passion for understanding
chronic illness and a goal of excellence in writing.
In May 2005 I received a call from Ilene’s
son saying that she had died unexpectedly
after a minor surgical procedure. I learned
so much from her about writing and editing
as we partnered in the fourth, fifth, and sixth
editions (the manuscript for the sixth edition
had just been sent to Jones & Bartlett Learning
when she died). And now, 12 years later, the
10th edition has been published. Happy 10th
edition to the book’s loyal contributors and
readers. You have made this book a success
in every way. And to you, Ilene, it has been a
pleasure to continue your legacy.
Pamala D. Larsen
▸▸ Reference
Lubkin, I. (1986). Preface. In I. Lubkin (Ed.). Chronic illness:
Impact and interventions (1st ed., pp. v, vi). Boston, MA:
Jones and Bartlett Publishers.
Strauss, A. (1986). Foreword. In I. Lubkin (Ed.). Chronic
illness: Impact and interventions (1st ed., pp. vii, viii).
Boston, MA: Jones and Bartlett Publishers.
© Aljndr/Shutterstock

Contributors
Rebecca Carron, PhD, RN, NP-C Faye I. Hummel, RN, PhD, CTN-A, ANEF
Assistant Professor Director/Professor
Fay W. Whitney School of Nursing School of Nursing
University of Wyoming University of Northern Colorado
Laramie, WY Greeley, CO
Anne Deutsch, RN, PhD, CRRN Cynthia S. Jacelon, PhD, RN-BC, CRRN, FGSA, FAAN
RTI International Professor
Rehabilitation Institute of Chicago College of Nursing
Northwestern University, Feinberg University of Massachusetts Amherst
School of Medicine Amherst, MA
Chicago, IL
Pamala D. Larsen, PhD, RN
Kimberly A. Dion, RN, PhD, CNE Professor Emeritus
Clinical Assistant Professor Fay W. Whitney School of Nursing
College of Nursing University of Wyoming
University of Massachusetts Amherst Laramie, WY
Amherst, MA
Raeann G. LeBlanc, DNP, AGPCNP-BC, CHPN
Cheryl E. Gies, DNP, MSN, CNP, RN Assistant Clinical Professor
Associate Professor (Retired) University of Massachusetts Amherst
College of Nursing Amherst, MA
University of Toledo
Barbara J. Lutz, PhD, RN, CRRN, PHNA-BC, FAHA,
Toledo, OH
FNAP, FAAN
Ann Marie Hart, PhD, FNP-BC, FAANP McNeill Distinguished Professor
Professor School of Nursing
Fay W. Whitney School of Nursing University of North Carolina – Wilmington
University of Wyoming Wilmington, NC
Laramie, WY
Kristen L. Mauk, PhD, DNP, RN, CRRN, GCNS-BC,
Alicia Huckstadt, PhD, APRN, FNP-BC, GNP, FAANP GNP-BC, ACHPN, FAAN
Professor Professor
School of Nursing Colorado Christian University
Wichita State University Lakewood, CO
Wichita, KS President
International Rehabilitation Consultants/
Senior Care Central, LLC
Ridgway, CO

ix
x Contributors

Elaine T. Miller, PhD, MN, BSN, CRRN, FAAN, FAHA Susan K. Rice, PhD, RN, CPNP-PC, CNS
Professor Professor
College of Nursing College of Nursing
University of Cincinnati University of Toledo
Cincinnati, OH Toledo, OH
Nicholas R. Nicholson, Jr., PhD, MPH, RN, PHCNS-BC Susan Sochacki, PhD, MSN, RN
Associate Professor Associate Professor
Quinnipiac University College of Nursing
Hamden, CT University of Toledo
Toledo, OH
Linda L. Pierce, PhD, RN, CNS, CRRN, FAHA, FAAN
Professor
College of Nursing
University of Toledo
Toledo, OH
 PART I
Impact of the Disease
to the Individual and
Family
CHAPTER 1 Chronicity . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
CHAPTER 2 The Illness Experience. . . . . . . . . . . . . . . . . . . . . . 19
CHAPTER 3 Psychosocial Adjustment . . . . . . . . . . . . . . . . . . . 39
CHAPTER 4 Social Isolation. . . . . . . . . . . . . . . . . . . . . . . . . . . . 57
CHAPTER 5 Spirituality . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81
CHAPTER 6 Uncertainty. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107
CHAPTER 7 Quality of Life. . . . . . . . . . . . . . . . . . . . . . . . . . . 129
CHAPTER 8 Adherence. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 159
CHAPTER 9 Family Caregiving. . . . . . . . . . . . . . . . . . . . . . . . 191
CHAPTER 10 Intimacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227
CHAPTER 11 Powerlessness . . . . . . . . . . . . . . . . . . . . . . . . . . 243
CHAPTER 12 Loss . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 271
CHAPTER 13 Culture and Diversity. . . . . . . . . . . . . . . . . . . . . 287
© Aljndr/Shutterstock CHAPTER 14 Self-Management. . . . . . . . . . . . . . . . . . . . . . . 311
1
CHAPTER 1
Chronicity
Pamala D. Larsen
T
he prevalence of chronic disease on
a worldwide basis is similar to, if not
greater than, that in the United States.
The World Health Organization (WHO) views
chronic disease as a silent pandemic spreading
to all parts of the world. The WHO uses the term
noncommunicable disease (NCD) to denote
chronic disease. Noncommunicable diseases are
responsible for the deaths of 40 million people
every year, which amounts to 70% of the total
deaths worldwide. Cardiovascular disease, cancer,
respiratory diseases, and diabetes account for 81%
of all NCD deaths (WHO, 2017). Twenty percent
of chronic disease deaths occur in high-income
countries, whereas the remaining 80% occur in low-
and middle-income countries (WHO, 2013a).
Addressing the issues of chronic illness
is a global challenge. The global pandemic of
chronic disease has emerged in tandem with the
changing demography of the world population.
Throughout the world, the birth rate exceeds the
death rate; in addition to having better access to
treatment, more people are living to advanced
ages, creating a phenomenon of “global aging.”
These epidemiologic transitions are dynamic,
wherein some diseases may disappear while
others recur; for example, infectious diseases
are reemerging in high-income countries as
© Aljndr/Shutterstock
bacteria develop resistance to antibiotics. Whereas
many healthcare professionals might consider
the increase in chronic disease to be largely
attributable to an aging population, the issue is
much more complex. Demographic, socioeco-
nomic, technologic, cultural, environmental,
and biologic changes also affect the incidence
of chronic disease.
Chronic diseases are common, costly, and
debilitating, but often they may be prevented. Four
health-damaging, but modifiable, behaviors—
tobacco use, insufficient physical activity, poor
nutrition, and excessive alcohol use—are currently
responsible for much of the illness, disability, and
premature death related to chronic disease (Centers
for Disease Control and Prevention [CDC], 2015).
One-half of the disability prevalence among U.S.
adults in 2013 could be attributed to the presence
of at least one of the modifiable factors. Individual
risk factors, smoking, obesity, and hypertension—in
that order—were the most consequential (Mehta,
Patel, Ali, & Narayan, 2017).
▸▸ Introduction
In 2012 it was estimated that one of two adults
in the United States—117 million people—had
3
4 Chapter 1 Chronicity
one or more chronic health conditions, with one
in four adults having two or more chronic health
conditions (CDC, 2016a). Seven of the top 10
causes of death in 2014 were chronic diseases.
Heart disease and cancer, together, accounted
for nearly 48% of all deaths (CDC, 2017). The
leading causes of death in the United States in
2014 were as follows (CDC, 2017):
■■ Heart disease
■■ Cancer
■■ Chronic lower respiratory disease
■■ Accidents
■■ Cerebrovascular disease
■■ Alzheimer’s disease and other dementias
■■ Diabetes
■■ Influenza and pneumonia
■■ Kidney disease
■■ Suicide
The mortality rate of cancer has surpassed
that of heart disease in a number of states. In
2000, there were only two states where cancer
was the leading cause of death; in 2014, there
were 22 (Heron & Anderson, 2016).
In 2013 (the most current data available)
healthcare costs of chronic disease amounted
to 86% of the total U.S. healthcare costs, which
were $2.9 trillion at that time (CDC, 2016a). The
CDC leads U.S. efforts to prevent and control
disease and their risk factors through the Na-
tional Center for Chronic Disease Prevention
and Health Promotion (NCCDPHP). Fast facts
from the NCCDPHP indicate that prevention
makes a difference.
■■ Tobacco prevention and control is one of
the “best buys in public health.” States with
strong tobacco control programs see a $55
return on every $1 investment, mostly from
avoiding costs of treating smoking-related
illness.
■■ Every $1 spent to fluoridate a community
water system saves about $38 each year
from fewer cavities needing to be treated.
■■ The annual cost of offering the National
Diabetes Prevention Program is about
$500 per participant, which is much lower
than the $7,900 spent on diabetes care per
patient each year for those who progress to
type 2 diabetes.
■■ A 13% reduction in the number of people
with uncontrolled hypertension (4.7 million)
would save the healthcare system $25.3
billion per year in averted disease costs.
(CDC, 2016b).
From 1990 to 2010, the United States made
significant progress in improving health. However,
morbidity and chronic disability now account
for nearly half of the U.S. health burden, and
improvements in population health have not
kept pace with advances in population health in
other wealthy nations (U. S. Burden of Disease
Collaborators, 2013).
Disease Versus Illness
Although the terms disease and illness are often
used interchangeably, there is a distinct difference
between them. “Disease” refers to the pathophys-
iology of a condition. “Illness,” in contrast, is the
human experience of a disease and refers to how
the disease is perceived, lived with, and responded
to by individuals, their families, and healthcare
professionals. The pathophysiology of a disease
predominates care; however, to provide holistic
care, one needs to recognize and understand
the illness experience of the patient and family.
From the perspective of the patient:
It is Sunday, 2:08 a.m. I am wheeled
into a sterile white examination room,
obviously used for “codes,” patients like
me, deemed to be in serious trouble.
I look at the reinforced glass in the
windows separating my room from the
other side. The curtains are drawn and
I cannot see out, but on my side I can
read the words on the glass, changing
with each window:
O2 ___L-m___by___
Medication Dose Time
IV Fluid Rate
Defibrillation
Beth puts her arms around me and holds
me. She doesn’t deserve this, I think. Why

must she go through all of this again?
(Hsi, 2004, pp. 164–165)
From the perspective of the caregiver:
Today is the 19th day in a row that
Randy has seen a healthcare profes-
sional, and actually a couple of those
days, he saw two different ones on the
same day. It’s either radiation therapy,
receiving IV fluids and/or replace-
ment potassium, an IV antibiotic for
a resistant infection, receiving blood
as an outpatient, persistent vomiting,
. . . something every day. Will this ever
stop? Will we ever have a normal life
again? Right now I don’t even remember
what normal is.
—Pamala
Patient and family stories chronicle the illness
experience. Patients and families are the ones
who are perceiving and living with the chronic
disease. Healthcare professionals play a part in
that experience; however, the primary players
are the patient and family.
The focus of this text is on the chronic
illness experience of individuals and families.
Although specific disease processes may have
unique physical characteristics, the psychosocial
concepts discussed in this book are experienced
by many patients and families with chronic
disease. Even though chronic disease cannot be
cured, nursing can have an impact on the illness
experience with care versus cure.
Defining Chronic Illness
Defining chronic illness is complex. An early
definition by the Commission on Chronic Illness
included impairments and deviations from the
normal that had one or more of the following
characteristics: permanency; residual disability;
nonpathologic alteration; and required rehabilita-
tion or a long period of supervision, observation,
and care. Disability may depend not only on
the kind of condition and its severity, but also
Impact of Chronic Illness 5
on the implications it holds for the person. The
degree of disability and altered lifestyle—part
of traditional definitions—may relate more to
the patient’s perceptions and beliefs about the
disease than to the disease itself.
Long-term and iatrogenic effects of some
treatment may constitute chronic conditions in
their own right. Of particular note are the che-
motherapies and radiation therapy treatments
for cancer. Studies have demonstrated that some
of these life-saving treatments that occurred
many years ago may lead to the development
of a new cancer.
Although definitions of chronic disease are
important, from a nursing perspective we are
far more interested in how the disease affects
the patient and family from a psychosocial
perspective. What is the illness experience of
the patient and family? Perhaps the onus of
defining chronic illness—and similarly, quality
of life—should be placed on the patient, as only
the patient understands and “knows” the illness
experience. However, that aside, the following
definition of chronic illness is offered:
Chronic illness is the lived experience
of the individual and family diagnosed
with chronic disease. The individual’s and
family’s values impact their perceptions
and beliefs of the condition and thus
their illness and wellness behaviors.
Their values are influenced by demo-
graphic, socioeconomic, technological,
cultural, and environmental variables.
The lived experience is “known” only
to the individual and family. (Larsen,
2016, pp. 5–6)
▸▸ Impact of Chronic
Illness
The impact and interventions cited in this chap-
ter examine chronic disease from an aggregate
perspective, using a public health lens to view
chronic disease and potential interventions.
6 Chapter 1 Chronicity
The Older Adult
Although chronic diseases and conditions
exist in children, adolescents, and young and
middle-aged adults, the bulk of these conditions
occur in adults age 65 years and older. Since
1900, the percentage of the U.S. population
made up by older Americans has tripled. Ac-
cording to A Profile of Older Americans: 2015,
between 2004 and 2015, the population age 60
and older increased 34%, from 49.8 million to
66.8 million. By 2060, it is projected there will
be 98 million adults in the United States who
are older than 65 years (Administration on
Aging, 2016).
It has been suggested that the United States
is not investing sufficiently in keeping people
healthy late in life (Rowe, Fulmer, & Fried, 2016).
Advances are needed in four areas to improve
the health and well-being of older persons, es-
pecially those with multiple chronic conditions
(MCCs): (1) enhancing care delivery for chronic
conditions; (2) strengthening the elder care
workforce; (3) fostering social engagement in
late life; and (4) strengthening advanced illness
and end-of-life care (p. 1644).
The report State of aging and health in
America 2013 (CDC, 2013) provides a snap-
shot of the impact of chronic illness on older
adults. With two of every three older Americans
having MCCs, the need for action is apparent.
The National Report Card on Healthy Aging
reports on 15 indicators of older adult health, 8
of which are identified in Healthy People 2020.
On a positive note, older adults have met six of
the Healthy People 2020 targets—those dealing
with leisure-time physical activity, obesity,
current smoking, taking medications for high
blood pressure, mammograms within the
past 2 years, and colorectal cancer screenings.
However, three areas need improvement in this
population: receiving a flu vaccine, receiving
pneumonia vaccine, and up-to-date preventive
services. Consequently, State of aging and health
in America 2013 lists several calls to action to
improve the health and well-being of older
adults:
■■ Developing a new Healthy Brain Initiative
Road Map
■■ Addressing aging and health issues among
the lesbian, gay, bisexual, and transgender
(LGBT) community
■■ Using data on physically unhealthy days to
guide interventions
■■ Addressing mental distress among older
adults
■■ Monitoring vaccination rates for shingles
(CDC, 2013)
High-Need, High-Cost Patients
Meeting the needs of high-need, high-cost
patients is a challenge for healthcare providers.
High-need, high-cost patients ,who experience
a variety of complex medical conditions, have
limitations in the ability to care for themselves;
although they are only 5% of all patients,
they account for 50% of healthcare spending
(Blumenthal & Abrams, 2016). These patients are
also more likely to experience less quality and
safety in their care (p. 711). In addition, MCC
patients are likely to have unmet social needs
that may exacerbate their medical conditions.
Older adults will access—if their socioeco-
nomic status permits—an acute care system.
How will the needs of these aging adults affect
the healthcare delivery system in this country?
National Healthcare Quality
and Disparities Report
Late identification of persons with chronic disease,
due to access issues, leads to poor outcomes,
more complications for the individual, and
greater healthcare expenditures. These individ-
uals may be young, middle-aged, or older, but
their outcomes are similar. As chronic disease
requires long-term care, the need for quality care
and continued access to that care is essential. If
there is poor quality of care or limited access,
health outcomes tend to be poor.
It must also be noted that social determinants,
the conditions in which people live, learn, work,

play, and worship, affect health and produce
disparities. These determinants include poverty,
lack of access to high-quality education or em-
ployment, unhealthy housing, unfavorable work
and neighborhood conditions, and exposure to
neighborhood violence (Thornton et al., 2016).
The National Healthcare Quality and Dis-
parities Report (Agency for Healthcare Research
and Quality [AHRQ], 2016) is an indicator of how
the United States is performing regarding quality
of care and health disparities. The statistics on
quality and access to care are vitally important
to individuals across the country.
Since 2003, the Agency for Healthcare Research
and Quality (AHRQ) has reported on progress
and opportunities for improving healthcare
quality and reducing healthcare disparities. As
in prior years, the findings from the National
Healthcare Quality Report (NHQR) and the
National Healthcare Disparities Report (NHDR)
have been integrated into a single report to rein-
force the need to consider concurrently the quality
of health and disparities across populations.
To obtain high-quality care, individuals
must first gain entry into the healthcare sys-
tem. Measures of access to care tracked in the
Quality and Disparities Report include having
health insurance, having a usual source of care,
encountering difficulties when seeking care, and
receiving care as soon as wanted. Historically,
Americans have experienced variable access to
care based on race, ethnicity, socioeconomic
status, age, sex, disability status, sexual orien-
tation, gender identity, and residential location
(AHRQ, 2016). The latest report reveals the
following:
■■ People in poor households had worse access
to care than people in high-income house-
holds on all access measures.
■■ Hispanics had worse access to care than
whites for two-thirds of access measures.
■■ Blacks had worse access to care than whites
for about half of access measures.
■■ Asians, American Indians, and Alaska N
­ atives
had worse access to care than whites for
about one-third of access measures.
Impact of Chronic Illness 7
Similarly, quality of health care has varied
based on race, ethnicity, socioeconomic status,
age, sex, disability status, sexual orientation, gen-
der identity, and residential location. Measures
of healthcare quality encompass a broad array
of services, including prevention, emergency
treatment, behavioral health care, and chronic
disease management, and in a variety of settings
such as medical offices, health centers, emer-
gency departments, dialysis centers, hospitals,
mental health and substance abuse treatment
facilities, nursing homes, hospices, and home
health (AHRQ, 2016). Data from the latest report
include the following:
■■ People in poor households received worse
care than people in high-income households
for about 60% of quality measures.
■■ Blacks, Hispanics, American Indians, and
Alaska Natives received worse care than
whites for about 40% of quality measures.
■■ Asians received worse care than whites for
about 20% of quality measures.
In a survey of 11 countries, Osborn and
colleagues (2016) compared adults in the United
States with adults in 10 other countries (Australia,
Canada, France, Germany, the Netherlands, New
Zealand, Norway, Sweden, Switzerland, and
the United Kingdom) on issues of access and
affordability of health care. Relative to other
countries, the healthcare system in the United
States performs poorly in meeting several pop-
ulation health goals. Factors affecting access in
the United States included high out-of-pocket
spending and lack of available after-hours care,
coordination of care, and management of chronic
illness (p. 2333). The United States remains an
outlier among high-income countries in ensuring
access to health care. Overall, the Netherlands
performed at the top of the 11 countries on most
measures of access, engagement, and coordination
(Osborn, Squires, Doty, Sarnak, & Schneider, 2016).
Healthcare Consumer
Medical expansion continues in the United States;
whereas healthcare expenditures were 5.1% of
8 Chapter 1 Chronicity
the gross domestic product (GDP) in 1960, they
were 17.8% in 2015. Some of this expansion
is due to the role of consumers. Zheng (2015)
suggests that in the course of medical expansion,
consumers’ health knowledge and literacy have
increased substantially, and this trend has led to
a lower tolerance for disease and discomfort and
a greater demand for medical solutions. Several
decades ago Illich (1975) suggested that any
personal responsibility for suffering, pain, and
impairment has been removed and has created
dependence on health care. Medical expansion
and an increase in healthcare expenditures have
not led to better subjective health. Zheng (2015,
p. 36) analyzed trends in self-rated health across
28 countries participating in the World Values
Survey or the European Values Study since 1981,
and did not find significant improvements in
subjective health.
Zheng (2015) offers four reasons, from his
work and others, as to why medical expansion
has not been accompanied by increased subjective
health. First, more diseases are being discovered
or created during periods of medical expansion;
for example, a change in the way autism was
diagnosed led to an increase in autism prev-
alence in California between 1992 and 2005.
Second, individuals are being exposed to more
aggressive screening and diagnostic tests, which
increase the likelihood of being diagnosed with
a disease. Third, medical expansion may increase
people’s expectations for health, and people may
believe that they suffer from health issues when
their expectations are not met. Lastly, medical
expansion causes people experiencing health or
even nonhealth problems to subordinate their
lives to medical institutions and treatments.
Once in that system, patients are subject to “sick
role expectations” (see Chapter 2) and stigma
that contribute to social withdrawal, reduction
of activities, increased dependency, and the
loss of self-esteem and self-efficacy and sense
of control (p. 36).
The population over the age of 65 continues
to grow significantly owing to the influx of baby
boomers (individuals born between 1946 and
1964). The newest group of seniors is the most
ethnically and racially diverse of any previous
generation. Members of this well-educated,
consumer-driven generation want information
about their conditions and all treatment options.
They question their healthcare professionals
and do not blindly accept healthcare advice and
treatment options. These consumers want the
ability to say “yes” or “no” to treatment options.
William Frist, a heart and lung transplant
surgeon and former U.S. Senate majority leader
and senator from Tennessee, has spoken about
two influences on health care today—namely,
the rapid ascent of the newly empowered con-
sumer with knowledge that can affect his or her
health and advances in information technology
(IT) (Frist, 2014). Neither of these changes
were significant drivers of health care even
10 years ago; Frist, however, believes that the
“empowered consumer and rapidly advancing
health IT will channel our chaotic, fragmented,
and wasteful health care sector toward a more
seamless, transparent, accountable and efficient
system” (p. 191).
The biggest driver of health status is in-
dividual health behavior. Only 10–15% of an
individual’s health status is attributable to the
healthcare service he or she receives (Schroder,
2007). The rest is determined by behavior; ge-
netics; and social determinants, which include
living conditions, access to food, and educational
status (Frist, 2014). The number of individuals
with chronic disease is climbing. To avert those
conditions for millions of others who are at risk,
healthcare systems must make healthy choices
easy for individuals to accept into their daily lives.
Financial Impact
Total U.S. healthcare spending increased by 5.8%
to $3.2 trillion or $9,990 per person in 2015
as compared with data from 2014 (Martin,
Hartman, Washington, Catlin, & National Health
Expenditure Accounts Team, 2017). Following
five consecutive years of historically low growth
from 2009 to 2013, health spending growth
accelerated in 2014 (up 5.3%) and in 2015 (up
5.8%). Coverage expansion that began in 2014,

as a result of the Affordable Care Act, continued
to affect healthcare spending growth in 2015
(p. 166). This was accompanied, however, by
a slowdown in overall economic growth in the
country, from 4.2% in 2014 to 3.7% in 2015. The
increase in total healthcare spending in 2015
was primarily driven by spending on private
health insurance, hospital care, and physician
and clinical services, although at a slower rate
than in 2014 (p. 167). Martin and colleagues
(2017) note several important findings:
■■ Total expenditures for private health in-
surance reached $1.1 trillion and increased
7.2% from 2014. Private health insurance
continues to be the largest payer of health
care in the United States, and accounts for
33% of total healthcare spending (p. 171).
■■ Growth in prescription drug spending, up
9%, was more than for any other service in
2015. Spending on new brand-name med-
ications continued to drive overall growth
in prescription drug spending.
■■ Healthcare spending is projected to increase
as a share of the overall economy during
the next 10 years and will be influenced by
the aging population, changing economic
conditions, and faster medical price growth
(p. 175).
■■ In 2014 and 2015, spending by the federal
government on health care grew faster than
spending by any other sponsor, increasing
8.9% in 2015 after an 11% increase in 2014.
The American Heart Association (AHA)
predicts that cardiovascular (CV) disease costs
will reach $1.1 trillion by 2035. If left unchecked,
CV disease will affect 45% of the total U.S.
population. The AHA had estimated in 2011
that the number of people with CV disease would
reach 100 million by 2030. Unfortunately that
prediction was reached in 2015, 15 years earlier
than predicted (AHA, 2017).
In the United States in 2008, the top 10
costliest medical conditions, in rank order,
were the same for both men and women age
18 years and older: (1) heart disease, (2) cancer,
(3) mental disorders, (4) trauma-related disorders,
Impact of Chronic Illness 9
(5) osteoarthritis, (6) asthma, (7) hypertension,
(8) diabetes, (9) back problems, and (10) hyper-
lipidemia (Soni, 2011). However, the highest
per-person mean expenditures were in cancer
for both men and women—$4,873 and $4,484,
respectively. These data indicate that chronic
disease is the nation’s greatest healthcare problem
and the number one driver of health care today.
With the aging population and the advanced
technologies that help clients to live longer, these
costs will only increase.
Data from the National Health Interview
Survey (NHIS) from 2012 found that one in four
families experience a financial burden paying
for medical care. One in 10 persons in a family
are unable to pay anything toward health care
(Cohen & Kirzinger, 2014). Additionally, one
in three families with children experience a
financial burden from medical care.
The Organization for Economic Coopera-
tion and Development (OECD) annually tracks
and reports on more than 1,200 health system
measures across 30 industrialized countries. The
United States continues to differ markedly from
other countries examined in the OECD report.
Using data from the OECD Health Statistics, 2014
(OECD, 2015a), the annual health expenditure
per capita (incorporating both public and private
expenditures) for an individual in the United
States was $8,745 (the 2015 amount was $9,990,
as mentioned previously) and ranked number
one for healthcare spending. The average health
expenditure per capita among OECD countries
was $4,791.
Compared with other OECD countries,
the United States has fewer physicians per capita
(2.5 per 1,000 population compared with the
OECD average of 3.2), more nurses (11.1 per 1,000
population compared with the OECD average
of 8.8), and fewer hospital beds (3.1 per 1,000
population compared with the OECD average
of 4.8). This decline in U.S. hospital beds coin-
cides with the reduction in the length of stays
in hospitals and an increase in day surgeries.
While life expectancy at birth in the United
States was 1½ years greater than the OECD
average in 1960, it is now, at 78.7 years, almost
10 Chapter 1 Chronicity
2 years less than the OECD average of 80.5 years,
Japan, Spain, and Switzerland lead a group of
eight OECD countries where life expectancies
exceed 82 years (OECD, 2015b). The United
States ranks 27th in life expectancy out of the
34 OECD countries.
One health risk factor—obesity—has
affected any increase in life expectancy. The
obesity rate among adults in the United States
between 2011 and 2014 was 36.5%, up from
15% in 1978 (Ogden, Carroll, Fryar, & Flegal,
2015). This is the highest rate among all OECD
countries. The average obesity rate for the 15
OECD countries for which data were available
was 22.8%.
One positive note is that smoking in
the United States has decreased significantly.
The rate in the United States decreased from
33.5% in 1980 to 14% in 2012. Only Mexico,
Sweden, and Iceland have lower rates of smoking
(OECD, 2015b).
▸▸ Interventions
Chronic disease is an issue that is all encompassing,
such that interventions from a variety of sources
are needed to make a difference. What is the role
of the registered nurse (RN) in the care of clients
with chronic disease? Professional education,
evidence-based practice, and legislation affect any
potential interventions. Lastly, paradigms from
the Centers for Disease Control and Prevention,
the Health and Medicine Division (formerly the
Institute of Medicine), and the World Health
Organization address chronic disease and ways
to mitigate its impact.
The Role of Nursing
The 2015 National Nursing Workforce Survey
demonstrated that with the current trend, there
will be sufficient numbers of new RNs entering
the profession to offset concerns about a potential
nursing shortage due to retirements (Halpern,
2016). The average RN is 48.8 years old, indi-
cating that the aging of the RN workforce may
be slowing down, as the average age in 2013 was
50 years. Ethnic minorities accounted for 19.5%
of the workforce in both 2013 and 2015, and
accounted for higher proportions of younger
and recently licensed RNs (p. 17). Data also
revealed that RNs are more highly educated
than ever before.
With a sufficient number of RNs, the pos-
sibilities are endless of how they might work
with individuals with chronic disease. For the
past few years, there has been talk about ex-
panding the role of the RN. It is no secret that
primary care in the United States is in need of
transformation. The Affordable Care Act (ACA),
also known as Obamacare, which emphasized
the importance of primary care, has enabled
millions of Americans to seek care, many of
those individuals having at least one chronic
condition. Strengthening the core of primary
care service delivery is key to achieving the
Triple Aim: improved patient care experiences,
better population health outcomes, and lower
healthcare costs (Josiah Macy Jr. Foundation,
2016). The Macy Foundation asks, “Who can
help alleviate the pressures on primary care?”
An available resource is the 3.1 million RNs.
Because RNs are not directly reimbursable un-
der the traditional fee-for-service model, new
payment models will need to be developed to
facilitate primary care teams that include RNs.
The California Healthcare Foundation
(2015) lists 12 strategies to enhance the role of
the RN in primary care. Two of the strategies
clearly speak to the role of the RN in chronic
disease: provide patients with RN-led chronic
care management visits and employ RNs’ skills
to care-manage patients with complex health
care needs (p. 6).
Bodenheimer and Bauer (2016) explain
that nurse practitioners (NPs) and physician
assistants (PAs) are increasingly fulfilling the
roles in chronic care that physicians once occu-
pied. A large part of that trend is the decreasing
number of primary care physicians. Many are
retiring each year and are not being replaced.
In addition, physicians tend not to practice in
rural areas, unlike NPs and PAs. RNs could be

an important part of the healthcare team by
serving as chronic care managers. An expanded
role for RNs indicates that additional training/
education would be necessary (Bodenheimer &
Bauer, 2016; California Healthcare Foundation,
2015; Josiah Macy Jr. Foundation, 2016).
Professional Education
One of the challenges in chronic disease care
and management is educating healthcare
professionals about providing care tailored to
those with chronic disease. The differences are
vast between caring for a person with an acute
illness on a short-term basis and caring for a
person with a chronic condition over the long
haul. WHO developed a document outlining
the steps to prepare a healthcare workforce for
the 21st century that can appropriately care
for individuals with chronic conditions. The
WHO document calls for a transformation of
healthcare training to better meet the needs
of individuals with chronic conditions. This
document, Preparing a Health care Workforce
for the 21st Century: The Challenge of Chronic
Conditions (WHO, 2005), has the support of the
World Medical Association, the International
Council of Nurses, the International Pharma-
ceutical Federation, the European Respiratory
Society, and the International Alliance of Patients’
Organizations.
The competencies delineated by WHO
(2005, p. 14) were identified through a process
that included an extensive document/literature
review and international expert agreement.
All competencies were based on addressing
the needs of patients with chronic conditions
and their family members from a longitudi-
nal perspective, and focused on two types of
“prevention” strategies: (1) initial prevention
of the chronic disease and (2) prevention of
complications from the condition (p. 18). The
five competencies include patient-centered care,
partnering, quality improvement, information
and communication technology, and public
health perspective (BOX 1-1). At first glance, the
competencies might not seem unique. However,
Interventions 11
BOX 1-1 WHO Core Competencies
Patient-Centered Care
Interviewing and communicating effectively
Assisting changes in health-related behaviors
Supporting self-management
Using a proactive approach
Partnering
Partnering with patients
Partnering with other providers
Partnering with communities
Quality Improvement
Measuring care delivery and outcomes
Learning and adapting to change
Translating evidence into practice
Information and
Communication Technology
Designing and using patient registries
Using computer technologies
Communicating with partners
Public Health Perspective
Providing population-based care
Systems thinking
Working across the care continuum
Working in primary healthcare–led systems
Reprinted from Preparing a health care workforce for the
21st century: The challenge of chronic conditions. Geneva,
Switzerland: World Health Organization, p. 20., Copyright 2005.
in an acute care–oriented healthcare delivery
system, these concepts are not as prominent.
Clients move in and out of the care system
quickly, and there is less need for implementation
of these concepts.
Evidence-Based Practice
The evidence-based practice movement had
its beginnings in the 1970s with Dr. Archie
Cochrane, a British epidemiologist. In 1971,
Cochrane published a book, Effectiveness and
efficacy: Random reflections on health services,
that criticized physicians for not conducting
12 Chapter 1 Chronicity
rigorous reviews of evidence to ensure that they
were making appropriate treatment decisions.
Cochrane was a proponent of randomized
controlled trials (RCTs), and in his exemplar
case noted that thousands of low-birth-weight
premature infants died needlessly. At the same
time, there were several RCTs that had been
conducted on the use of corticosteroid therapy
to halt premature labor in pregnant women, but
the data had never been reviewed or analyzed.
After review, these studies demonstrated that
corticosteroid therapy was effective in halting
premature labor and resulted in a decrease in
infant deaths due to prematurity. The result of
Cochrane’s call for systematic reviews of the
literature was the establishment of the Cochrane
Collaboration in Oxford, England, in 1993.
The Cochrane Collaboration has 52 review groups
composed of individuals around the world who
share an interest in developing and maintaining
systematic reviews in particular areas (Chan,
2013). The Cochrane Collaboration also hosts
the Cochrane Library, which is a sophisticated
collection of databases containing current,
high-quality research that supports practice.
As healthcare professionals examine the
evidence to improve the care of their clients,
there are a number of sources for reference.
The following agencies and organizations
are examples of some of the resources available:
■■ Agency for Healthcare Research and Quality
(AHRQ) (www.ahrq.gov)
■■ Clinical Evidence (www.clinicalevidence.com)
■■ Cochrane Library (www.thecochranelibrary
.com)
■■ Joanna Briggs Institute (www.joannabriggs.
org)
■■ National Guideline Clearinghouse (www
.guideline.gov)
■■ Task Force on Community Preventive Ser­
vices (www.thecommunityguide.org)
■■ U.S. Preventive Services Task Force (www
.ahrq.gov/clinic/uspstfab.htm)
■■ Veterans Evidence-Based Research Dissem-
ination Implementation Center (VERDICT)
(www.verdict.research.va.gov)
Legislation
On March 21, 2010, President Barack Obama
signed legislation to reform the U.S. healthcare
delivery system. The Patient Protection and
Affordable Care Act (ACA) and the Health Care
and Education Reconciliation Act expanded
health insurance coverage to individuals who
were not previously covered by any health plan
through the implementation of individual and
employer mandates as well as through expansion
of federal and state programs such as Medicare
and Medicaid. According to the Congressional
Budget Office (CBO), an estimated 32 million
additional individuals will be covered by 2019
(Albright et al., 2010).
Instead of creating a new healthcare financ-
ing system, in the same way that Medicare and
Medicaid were created in the 1960s, the ACA
attempted to build on the current system (Jost,
2014). Although building on “what was” was
intended to make it easier for implementation, it
actually made it much harder. Also, the roll-out
of the federal marketplace for healthcare policies
on October 1, 2013, was a disaster. Multiple
technical and political failures became apparent
in the design of the defective, nonfunctional
healthcare.gov website. In going forward, one
of the challenges of the ACA will be to ensure
that its benefits become apparent quickly and
dramatically enough to offset the problems
(Jost, 2014, p. 10).
The ACA addresses the real problem of
millions of uninsured Americans, and if it
accomplishes its goal, it will be considered
successful. However, the longevity of the ACA
is in question. The Trump administration and
the Republican-led Congress attempted to pass
a new healthcare bill and repeal the ACA in
March 2017; however, opposition to the bill was
great, even by some Republicans, and it did not
come to a vote in Congress. There is continued
talk about repealing the ACA.
Healthy People 2020
Healthy People provides science-based, 10-year
national objectives for improving the health
 Interventions 13

of all Americans (http://www.healthypeople
.gov). In the 2020 document, there is a renewed
focus on identifying, measuring, tracking, and
reducing health disparities through a determi-
nants-of-health approach. The mission of Healthy
People 2020 is fivefold:
■■ Identify nationwide health improvement
priorities.
■■ Increase public awareness and understand-
ing of the determinants of health, disease,
and disability and the opportunities for
progress.
■■ Provide measurable objectives and goals
that are applicable at the national, state,
and local levels.
■■ Engage multiple sectors to take actions to
strengthen policies and improve practices
that are driven by the best available evidence
and knowledge.
■■ Identify critical research, evaluation, and
data collection needs.
The topic areas and objectives of Healthy
People 2020 are based on four overarching goals:
(1) attain high-quality, longer lives free of pre-
ventable disease, disability, injury, and prema-
ture death; (2) achieve health equity, eliminate
disparities, and improve the health of all groups;
(3) create social and physical environments that
promote good health for all; and (4) promote
quality of life, healthy development, and healthy
behaviors across all life stages. Topic areas of
Healthy People 2020 are listed in TABLE 1-1.
Many of the topics relate to chronic disease or
prevention of chronic disease.

TABLE 1-1 Topics of Healthy People 2020

Access to health services Heart disease and stroke
Adolescent health Human immunodeficiency virus (HIV) infection
Arthritis, osteoporosis, and chronic back conditions Immunization and infectious diseases
Blood disorders and blood safety Injury and violence prevention
Cancer Lesbian, gay, bisexual, and transgender health
Chronic kidney disease Maternal, infant, and child health
Dementias, including Alzheimer’s disease Medical product safety
Diabetes Mental health and mental disorders
Disability and health Nutrition and weight status
Early and middle childhood Occupational safety and health
Educational and community-based programs Older adults
Environmental health Oral health
Family planning Physical activity
Food safety Preparedness
Genomics Public health infrastructure
Global health Respiratory diseases
Health communication and health information Sexually transmitted diseases
technology Sleep health
Healthcare-associated infections Social determinants of health
Health-related quality of life and well-being Substance abuse
Hearing and other sensory or communication Tobacco use
disorders Vision

U.S. Department of Health and Human Services. Office of Disease Prevention and Health Promotion. Healthy People 2020. Washington, DC. Available at
http://healthypeople.gov/2020/topicsobjectives2020/default.aspx.
14 Chapter 1 Chronicity
CDC’s National Center for
Chronic Disease Prevention
and Health Promotion
The National Center for Chronic Disease Pre-
vention and Health Promotion (NCCDPHP), a
center within the CDC, is at the forefront of the
nation’s efforts to promote health and well-being
through prevention and control of chronic dis-
ease. The interventions of the NCCDPHP are
critical in supporting the nation’s public health
infrastructure as it works with healthcare provid-
ers, public health professionals, educators, and
policy-makers. To achieve optimal health for all,
NCCDPHP’s work on the social determinants of
health extends beyond the scope of traditional
public health practice to include collaboration
in education, housing, transportation, justice,
labor, and other sectors. Using four approaches,
the NCCDPHP supports the following activities
to prevent and control disease:
■■ Surveillance and applied research: To mea-
sure and monitor trends in the burden of
chronic disease and associated risk factors,
the NCCDPHP supports several surveillance
systems including, but not limited to, the
Behavioral Risk Factor Surveillance System
(BRFSS), Youth Tobacco Survey, Pregnancy
Risk Assessment Monitoring System, and
National Program of Cancer Registries. The
NCCDPHP has a network of more than 30
academic centers that conduct research
to address health problems identified by
communities.
■■ Promotion of policy, environmental, and system
changes at the state and community levels: As
an example, for the past four decades, the
Office on Smoking and Health has reviewed
research and provided 30 scientific reports
on health and the use of tobacco.
■■ Health communications: This approach includes
paid advertising, media advocacy, public
relations, and health promotion activities.
■■ Healthcare system linkages: The NCCDPHP
works with the healthcare system through
provision of services such as mammography
and tobacco cessation counseling for un-
derserved populations; it is also working
on issues of access to care, planned care,
self-management, patient navigation, and
quality prevention services (CDC, 2015).
Health and Medicine Division
(formerly the Institute of
Medicine)
Living Well with Chronic Illness: A Call for Public
Health Action (2012) is a report from a committee
of the IOM. The IOM contends that better efforts
are needed to maintain or enhance quality of life
for individuals and families living with chronic
illness. The report describes nine exemplar dis-
eases, health conditions, and impairments that
have significant implications for the health and
economy of the U.S.; impact quality of life and
functional status; cut across many illnesses and
complications, and/or increase risks for multiple
chronic conditions; and impact the community,
families, and caregivers of those with chronic
disease (p. xvi). These conditions are arthritis,
cancer survivorship, chronic pain, dementia,
depression, type 2 diabetes, post-traumatic
disabling conditions, schizophrenia, and vision
and hearing loss. The IOM report notes that
identifying these conditions does not mean
that they are more burdensome or important
than others, but rather that each illustrates a key
functionality or part of a chronic condition. In
fact, the authors of this report were advised to
not focus on the common high-mortality dis-
eases, but to consider conditions that have the
potential to cause or actually do cause functional
limitations and/or disabilities (p. 23).
The IOM considers chronic disease to be
a public health problem as well as a clinical
problem. Using that lens to view the problem
means that a population health perspective is
necessary to develop interventions and pol-
icies. Thus, the best framework to approach
chronic disease is an integrated one. The IOM
committee adopted the concept of “living well,”
originally proposed by Lorig and colleagues
 Interventions 15

Determinants of Health Spectrum of Health

Socio- Healthy
Cultural
Peers and Context Physical At Risk
Family Environment
Chronic
Illness
Coping Patterns of Health
Response Outcomes Impairment
Health Living
Determinants and Distribution
Functional Well with
Over the Life in the
Limitation Chronic
Course Population
Illness
Behavior Disability

End of
Life
Biology
Genes
Death

Policies and Other Interventions at

Individual and Population Levels

Population Public Public Community Health

Media
Surveillance Policy Health Orgs Care

Strategies to Achieve “Living Well”

FIGURE 1-1 Integrated framework for living well with chronic illness.
Reproduced from Institute of Medicine. (2012). Living well with chronic illness: A call for public health action. Washington, DC: National Academies Press, p. 32.

(2006, p. 32), to reflect the best achievable state ■■ Which populations need to be the focus of
of health that encompasses all dimensions of interventions to reduce the consequences
physical, mental, and social well-being. The of chronic disease, including the burden of
concept of living well, integrated within a disability, loss of productivity and function-
broader population health framework, is in- ing, healthcare costs, and reduced quality
tended to promote a more holistic perspective of life (p. 11)?
beyond the traditional focus on other goals ■■ What is the role of primary prevention (for
such as primary prevention or expansion of those at highest risk), secondary prevention,
life expectancy (p. 33). FIGURE 1-1 depicts the and tertiary prevention of chronic disease in
framework proposed by the IOM. reducing or minimizing life impacts (p. 12)?
The IOM committee’s 17 recommendations ■■ Which consequences of chronic diseases
addressed seven questions from the statement are most important to the nation’s health
of task: and economic well-being (p. 13)?
■■ Which policy priorities could advance
■■ Which chronic diseases should be the focus efforts to improve life impacts of chronic
of public health efforts to reduce disability disease (p. 14)?
and improve functioning and quality of ■■ Which population-based interventions
life (p. 10)? can help achieve outcomes that maintain
16 Chapter 1 Chronicity
or improve quality of life, functioning, and
disability (p. 15)?
• What is the evidence on the effectiveness
of interventions on these outcomes?
• To what extent do the interventions
that address these outcomes also affect
clinical outcomes?
• To what extent can policy, environ-
mental, and systems change achieve
these outcomes?
■■ How can public health surveillance be used
to inform public policy decisions to minimize
adverse life impacts (p. 18)?
A number of the recommendations involve
the current and future work of the CDC. Many
of the recommendations focus on research that
needs to be completed to recognize if any of our
current models of care for persons with chronic
illness make a difference in quality of life. The
recommendations are without priority order or
measured ranking, as all are thought to be im-
portant strategies and steps to undergird public
health action to enable individuals to live well with
chronic illness (p. 8). All recommendations, as
noted earlier, are based on a public health model.
World Health Organization
The WHO plan for prevention and control of
noncommunicable diseases (NCDs) is titled
the WHO global action plan for prevention and
control of NCDs 2013–2020. It provides a road
map and a menu of policy options for all WHO
member states and other stakeholders, as they
take coordinated and coherent action, at all levels,
local to global, to attain the nine voluntary global
targets. As an example, one of the targets is a 25%
relative reduction in premature mortality rate
from cardiovascular diseases, cancer, diabetes,
or chronic respiratory diseases by 2025.
WHO’s vision for the plan is to have a world
free of the avoidable burden of NCDs, with a
goal of reducing the preventable and avoidable
burden of morbidity, death, and disability due
to noncommunicable diseases by means of
multisectoral collaboration and cooperation at
regional, national, and global levels. The ideal is
for populations to reach the highest attainable
standards of health and productivity at every age
and for those diseases to no longer be a barrier
to well-being or socioeconomic development.
The focus of this action plan includes four
NCDs—cardiovascular diseases, cancer, chronic
respiratory diseases, and diabetes (which collec-
tively make the largest contribution to morbidity
and mortality associated with NCDs)—and
four shared behavioral risk factors—tobacco
use, unhealthy diet, physical inactivity, and
harmful use of alcohol. WHO recognizes that
the conditions in which people live and work
and their lifestyles influence their health and
quality of life (WHO, 2013b).
The overarching principles and approaches
advocated within the plan include the following:
(1) a human rights approach; (2) an equity-based
approach; (3) national action, international coop-
eration, and solidarity; (4) multisectoral action;
(5) life-course approach; (6) empowerment of
people and communities; (7) evidence-based
strategies; (8) universal health coverage; and
(9) management of real, perceived, and potential
conflicts of interest (WHO, 2013b).
▸▸ Summary
The United States touts itself as having the most
sophisticated and technologically advanced
health care in the world. Such health care should
produce optimal patient outcomes rivaled by
none. With U.S. healthcare expenditures now
accounting for 17.8% of the country’s GDP, it is
clear that sophisticated health care comes at a
price. Currently the United States spends $9,990
per capita to provide this care—yet outcomes are
not optimal and quality care and access to care lag
far behind those found in other wealthy nations.
When compared with the OECD countries, the
United States ranks below the median on most
core measures while having the most expensive
health care in the world. Life expectancy for
U.S. citizens now ranks in the bottom quartile
of the 34 countries in the OECD. How can that
be explained? What can be done to improve
access to care and quality of care?
 References 17

Study Questions
1. Identify the influences that have led to the increased incidence of chronic disease in
the United States and globally.
2. How can we better educate healthcare professionals to care for those with chronic
disease? To care for older adults with chronic disease?
3. Compare and contrast chronic disease and chronic illness.
4. What actions can the United States take to decrease healthcare disparities?
5. Discuss the expanded role of RNs in chronic disease. What are the pros and cons of
such action?

References Centers for Disease Control and Prevention. (2016b). N

Center for Chronic Disease Prevention and Health
­ ational

Administration on Aging. (2016). A profile of older Ameri-
cans: 2015. Washington, DC: Administration on Aging,
Administration for Community Living, U.S. Department
of Health and Human Services.
Agency for Healthcare Research and Quality. (2016). 2015
National Healthcare Quality and Disparities Report and
5th Anniversary Update on the National Quality Strategy.
AHRQ Publication No. 16-0015. Retrieved from http://
www.ahrq.gov/research/findings/nhqrdr/index.html
Albright, H. W., Moreno, M., Feeley, T. W., Walters, R., Samuels,
M., Pereira, A., & Burke, T. W. (2010). The implications
of the 2010 Patient Protection and Affordable Care Act
and the Health Care and Education Reconciliation Act
on cancer care delivery. Cancer, 117(8), 1564–1174.
American Heart Association. (2017). Cardiovascular disease
costs will exceed $1 trillion by 2035, warns the American
Heart Association. Retrieved from http://newsroom.heart
.org/news/cardiovascular-disease-costs-will-exceed-1
-trillion-by-2035-warns-the-american-heart-association
Blumenthal, D., & Abrams, M. K. (2016). Tailoring complex
care management for high-need, high cost patients.
Journal of the American Medical Association, 316(7),
711–712. doi:10.1001/jama.2016.10692
Bodenheimer, T., & Bauer, L. (2016). Rethinking the pri-
mary care workforce—An expanded role for nurses.
New England Journal of Medicine, 375(11), 1015–1017.
California Healthcare Foundation. (2015). RN role reimag-
ined: How empowering registered nurses can improve
primary care. Retrieved from http://www.chcf.org
Centers for Disease Control and Prevention. (2013). The
state of aging and health in America 2013. Atlanta,
GA: Author.
Centers for Disease Control and Prevention. (2015). The
four domains of chronic disease prevention. Retrieved
from https://www.cdc.gov/chronicdisease/resources
/publications/four-domains.htm
Centers for Disease Control and Prevention. (2016a). Chronic
disease overview. Retrieved from http://www.cdc.gov
/chronic disease.overview/
Promotion: At a Glance 2016. Retrieved from https://
www.cdc.gov/chronicdisease/resources/publications
/aag/nccdphp.htm
Centers for Disease Control and Prevention. (2017). Leading
causes of death. Retrieved from http://www.cdc.gov
/nchs/fastats/leading-causes-of-death.htm
Chan, R. (2013). Evidence-based cancer nursing: Cancer
nursing and the Cochrane Collaboration. Cancer Nurs-
ing, 36(1), 1–2. doi:10.1097/NCC.0b013e3182579a14
Cochrane, A. L. (1971). Effectiveness and efficiency: Random
reflections on health services. London, UK: Nuffield
Provincial Hospitals Trust.
Cohen, R. A., & Kirzinger, W. K. (2014). Financial burden
of medical care: A family perspective. NCHS Data
Brief no. 142. Hyattsville, MD: National Center for
Health Statistics.
Frist, W. H. (2014). Connected health and the rise of the
patient-consumer. Health Affairs, 33(2), 191–193. doi:
10.1377/hltaff.2013.1464
Halpern, L. W. (2016). A snapshot of the 2015 national
nursing workforce. American Journal of Nursing
116(8), 17.
Heron, M., & Anderson, R. N. (2016). Changes in the leading
cause of death: Recent patterns in heart disease and
cancer mortality. NCHS data brief no. 254. Hyattsville,
MD: National Center for Health Statistics.
Hsi, S. D. (2004). Closing the chart: A dying physician examines
family, faith and medicine. Albuquerque: University of
New Mexico Press.
Illich, I. (1975). Medical nemesis: The expropriation of health.
London, UK: Calder & Boyars.
Institute of Medicine. (2012). Living well with chronic illness:
A call for public health action. Washington, DC: National
Academies Press.
Josiah Macy Jr. Foundation. (2016). Registered nurses in trans-
forming primary care: Recommendations from the Macy
Foundation conference on preparing registered nurses for
enhanced roles in primary care. Conference Recommen-
dations. Retrieved from http://www.macyfoundation.org
18 Chapter 1 Chronicity
Jost, T. S. (2014). Implementing health reform: Four years later.
Health Affairs, 33(1), 7–10. doi:10.1377/hlthaff.2013.1355
Larsen, P. D. (2016). Chronicity. In P. D. Larsen (Ed.), Lubkin’s
chronic illness: Impact and intervention (9th ed., pp. 5–6).
Burlington, MA: Jones & Bartlett Learning.
Lorig, K., Holman, H. R., Sobel, D., Laurent, D., Gonzalez,
V., & Minor, M. (2006) Living a healthy life with chronic
conditions (3rd ed.). Boulder, CO: Bull.
Martin, A., Hartman, M., Washington, B., Catlin, A., &
National Health Expenditure Accounts Team. (2017).
National health spending: Faster growth in 2015 as
coverage expands and utilization increases. Health
Affairs, 36(1), 166–176.
Mehta, N. K., Patel, S. A., Ali, M. K., & Narayan, K. M. V.
(2017). Preventing disability: The influence of mod-
ifiable risk factors on state and national disability
prevalence. Health Affairs, 36(4), 626–635. doi:10.1377
/hlthaff.2016.1281
Ogden, C. L., Carroll, M. D., Fryar, C. D. & Flegal, K. M.
(2015). Prevalence of obesity among adults and youth:
United States, 2011–2014. NHIS data brief, no. 219.
Hyattsville, MD: National Center for Health Statistics.
Organization for Economic Cooperation and Development.
(2015a). Health at a glance 2015: OECD indicators.
­Retrieved from http://www.oecd.org/health/health
-systems/health-at-a-glance-19991312.htm
Organization for Economic Cooperation and Development.
(2015b). Health at a glance 2015: How does the United
States compare? Retrieved from https://www.oecd.org
/unitedstates/Health-at-a-Glance-2015-Key-Findings
-UNITED-STATES.pdf
Osborn, R., Squires, D., Doty, M. M., Sarnak, D. O., &
Schneider, E. C. (2016). In new survey of eleven countries,
U.S. adults still struggle with access to and affordability
of health care. Health Affairs 35(12), 2327–2336. doi:
10.1377/hlthaff.2016.1088
Rowe, J. W., Fulmer, T., & Fried, L. (2016). Preparing for
better health and health care for an aging population.
Journal of the American Medical Association, 316(6),
1643–1644.
Schroder, S. A. (2007). We can do better: Improving the
health of the American people. New England Journal
of Medicine, 357, 1221–1228.
Soni, A. (2011). Top 10 most costly conditions among men
and women, 2008: Estimates for the U.S. civilian non-
institutionalized adult population, age 18 and older.
Statistical Brief #331. Rockville, MD: Agency for
Healthcare Research and Quality. Retrieved from http://
www.meps.ahrq.gov/mepsweb/data_files/publications
/st331/stat331.shtml
Thornton, R. L. J., Glover, C. M., Cene, C. W., Glik, D. C.,
Henderson, J. A., & Williams, D. R. (2016). Evaluating
strategies for reducing health disparities by addressing
the social determinants of health. Health Affairs, 35(8),
1416–1423. doi:10.1377/hlthaff.2015.1357
U.S. Burden of Disease Collaborators. (2013). The state of
US health, 1990–2010: Burden of diseases, injuries and
risk factors. Journal of the American Medical Association,
310(6), 591–608. doi:10.1001/jama.2013.13805
U.S. Department of Health and Human Services. (2017).
Healthy People 2020. Topics and objectives. Retrieved
from http://healthypeople.gov/2020/topicsobjectives2020
/default.aspx
World Health Organization. (2005). Preparing a health care
workforce for the 21st century: The challenge of chronic
conditions. Geneva: Author.
World Health Organization. (2013a). Chronic diseases and health
promotion. Retrieved from http://www.who.int/chp/en/
World Health Organization. (2013b). Global action plan
for prevention and control of noncommunicable diseases
2013–2020. Geneva: Author.
World Health Organization. (2017). Noncommunicable
diseases. Fact sheet. Retrieved from http://www.who.int
/mediacentre/factsheets/fs355/en/
Zheng, H. (2015). Why has medicine expanded? The role of
consumers. Social Science Research, 52, 35–46.
CHAPTER 2
The Illness Experience
Pamala D. Larsen

pathology involved. Freidson’s classic work from

▸▸ Introduction 1970 initiated the discussion about the meanings
an individual and family ascribe to disease. The
The illness experience—that is, the lived experi-
individual and family have their own unique
ence of the individual and family with chronic
meanings and perceptions of the condition, and
disease—includes their perceptions and beliefs
ultimately their own unique illness behaviors.
about the condition; their responses to the illness,
This chapter provides an overview of the
physically, psychologically, socially, and emotion-
illness experience that includes perceptions,
ally; and health and/or illness behaviors associated
beliefs, and behavior demonstrated by individ-
with the experience. Illness perceptions are the
uals and families with chronic disease. This is
foundation for understanding individual and
a sociologic view of the disease as experienced
family health and illness behavior. Perceptions
by the patient and family, rather than a medical
are subjective and unique. These perceptions may
view. The body of knowledge about the illness
be as narrow as an individual symptom within
experience, most of which resides within the
a disease or as general as an overall perception
discipline of psychology, is vast. This chapter is
of a disease (e.g., cancer). As might be expected,
an overview and is not meant to be a compre-
the individual with a chronic disease may have
hensive review.
a different perception of the condition than do
The chapter also follows the illness experience
family members.
of this author, as my husband and I experienced
The patient is not the only one being cared
esophageal cancer.
for; care must include the family unit. Kayser,
Watson, and Andrade (2007) coined the phrase Cancer. It’s esophageal cancer, Stage IIIB.
“we-disease” in cancer. Many, if not all, chronic There’s been no mistake. The pathology
diseases fall into the “we-disease” category. The report has not been confused with someone
disease affects not only the patient but also else’s. Randy has cancer. We sit quietly in
the spouse, significant other, family and social the oncologist’s office, Randy, son Brett,
network. and I. No one says a word. There are no
The very act of diagnosing a condition words to speak, no questions that we
as an illness has consequences far beyond the need answered now. We are stunned.
© Aljndr/Shutterstock

19
20 Chapter 2 The Illness Experience
We had a normal life before . . . before
cancer. (Larsen, 2013, p. xv)
▸▸ Impact of Chronic
Illness on the Patient
and Family
The Lived Experience
Bury’s classic work describes chronic illness as a
biographical disruption to a patient and family.
In his words:
Chronic illness . . . is precisely that kind
of experience where the structures of
everyday life and the forms of knowledge
which underpin them are disrupted.
Chronic illness involves a recognition of
the worlds of pain and suffering, possibly
even of death, which are normally only
seen as distant possibilities or the plight of
others. In addition it brings individuals,
their families, and wider social networks
face to face with the character of their
relationships in stark form disrupting
normal rules of reciprocity and mutual
support. (Bury, 1982, p. 169)
The lived experience includes the patient’s and
family’s illness perceptions, beliefs, and behaviors,
but there is much more to the experience. It is
what the patient and family are experiencing at
that point and place in time and their interpreta-
tion of what is happening. It could be loneliness,
stigma, loss, powerlessness, and a myriad of
other feelings and beliefs as well as the physical
symptoms. The lived experience of the individual
with chronic illness cannot be measured by an
instrument. The patient and family are living on a
roller coaster, never knowing what the next curve
will bring. Is this new symptom an exacerbation
of my illness? Is what I’m experiencing during
treatment normal? What is normal?
It is said that a chronic illness should not
become an individual’s life, that the patient is
more than his or her illness. On any given day
when managing a chronic illness, it may be the
illness that is in charge, though, and not the
patient. Day after day, nausea, pain, “feeling bad,”
or fatigue becomes the patient’s life.
Can something go right just once? Can
Randy’s potassium level be normal just
once? Can he not have five straight
days of IV fluids and electrolytes as an
outpatient? Today he needs blood as
well. Oh yes, and the chemo port has
to be removed because that’s where the
infection is. I’m mad, I’m tired. How do
people do this? Every day is different, so
you can’t plan on anything because it
always changes. How do people work?
How do they care for their families with
cancer always there?
—Pamala
Most chronic illness research is grounded
in empirical, analytical methodology that exam-
ines relationships between variables; identifies
social determinants of health or illness; and uses
instruments that measure self-concept, quality
of life, hope, illness perceptions, illness behav-
ior, and so forth. However, if we, as healthcare
professionals, view the behavior of our patients
with chronic illness a “statistically significant
result” or a p value or a Pearson’s r, we are doing
patients and their families a disservice. Research
studies reduce patients to an aggregate so that
we can say most patients’ and families’ illness
perceptions or behaviors are normal or adaptive
or maladaptive. But consciously or unconsciously,
we know, in our relationships with patients and
families, that the effects of chronic illness are
much more than numbers.
Illness Perceptions
Each individual has a different perception of
an event, an item, a building, or something
that is known to them. It may be minor, such
as a football game, your neighborhood, or
the elementary school your child attends. If
 Impact of Chronic Illness on the Patient and Family
10 people were asked their perceptions of these
minor events or things, chances are that each
would have a different perception. The situation
is similar with chronic illness. With illness and
the accompanying symptoms and treatment,
each individual and each family member forms
his or her own perception of the disease being
experienced.
Patients and their families do not develop
their own illness beliefs and perceptions within
a vacuum, but rather are molded by everyday
social interactions, past experiences, sociode-
mographic factors, and culture. How one lives
during an illness, implements coping strategies,
and generally responds to the illness is based
on one’s perceptions. These perceptions may
be irrational, invalid, and stray far from reality.
However, right or wrong, these perceptions form
the basis of patients’ and families’ behavior when
confronted with a chronic disease.
The literature uses several terms for the same
construct: illness representations, illness perceptions,
illness narratives, and beliefs about illness. All of
these terms refer to a set of cognitions about the
subjective experience of an illness (Cameron,
Durazo, & Rus, 2016). All refer to how the pa-
tient (and family) view the illness and the events
surrounding it. Illness representations belong
to individuals, are interpreted by individuals,
and may not conform to science. In a majority
of studies, illness representations are measured
by the Illness Perception Questionnaire, the
Illness Perception Questionnaire—Revised, or
the Brief Illness Perception Questionnaire. Each
of these questionnaires assesses the cognitive
and emotional responses to illness (www.uib
.no/ipq/). In this chapter, the terms “illness
representations” and “illness perceptions” are
used interchangeably.
Patients and families build mental models
to make sense of an event (Petrie & Weinman,
2006). Thus, when an individual and family face
a health threat, a mental model of that threat
is developed. Patients and families can then
visualize the threat and become active problem
solvers. Encompassed within those models are
their perceptions of the diagnosis, the illness
21
experience, the treatment, and the consequences,
which, in turn, forecast their response. Often
these models do not make sense to outsiders,
including healthcare professionals, and some-
times the models are based on inaccurate infor-
mation. Each model is dynamic, and changes
as new data from healthcare professionals and
the patient’s own experiences are added to the
model. As might be expected, illness perceptions
are related to an improvement or worsening of
patients’ emotional well-being, which is gen-
erally associated with a change in health status
(Fischer et al., 2013).
Why are illness perceptions of interest to
healthcare professionals? The primary reason is
that perceptions directly influence the e­ motional—
and often the physical—response that patients
and families have to illness. A patient’s perception
may lead to adherence or nonadherence to treat-
ment or abnormal or normal illness behaviors.
Thus, understanding the patient’s perception is
key in understanding patient and family needs
and developing a treatment regimen and/or
understanding why a treatment regimen may
succeed or fail (Petrie & Weinman, 2006).
Leventhal and colleagues (2012) developed
the common-sense model of self-regulation (CSM)
to describe the different steps individuals and
families go through in responding to a health
threat. The literature also refers to this model as
the SRM, the self-regulation model. According
to the CSM, symptoms produce both cognitive
and emotional responses that are processed in
parallel (Anisman, 2016). The emotional responses
may be composed of negative reactions such as
anger, hurt, and fear as well as positive reactions.
The cognitive representation is identified by five
components:
■■ Identity of the illness: Connecting the
symptoms with the illness and having an
understanding of the illness. What happens
if the name or label of the disease is not
easily identified or the diagnosis does not
fit the symptoms?
■■ Timeline: Duration and progression of
the illness. “New” patients with a chronic
22 Chapter 2 The Illness Experience
illness might have an acute care framework
of their disease, while continuing patients
have a chronic view.
■■ Causes: Perceived reason for the illness. Most
patients form hypotheses about the causes,
asking, “Did I not exercise enough?” “Did I
smoke too much even though I quit 20 years
ago?” “Did the environment contribute to
my disease?”
■■ Consequences: The physical, psychosocial,
and economic impact of the illness to the
patient and the family. This component is
the patient’s overall evaluation of the seri-
ousness of this disease.
■■ Controllability: A belief that the disease can
be controlled, managed, or cured.
Illness perceptions are part of the self-regulation
process that takes place in the face of a health
threat. This approach also assumes that people
are motivated to avoid and/or treat health threats
(Anisman, 2016).
Leventhal and colleagues’ (2012) explanation
of perceptions leading to behavior makes one
think that cognitive and emotional responses fit
together like pieces of a puzzle, and there is a linear
progression from identity to control or curability.
But it isn’t that simple. Imagine that a chronic
disease has affected either you or someone in
your family. You may have had some knowledge
of the disease prior to diagnosis, but now that
the condition is “yours,” your perception may
change. Plus, you begin to search the Internet,
which provides more information than you can
possibly absorb. You begin with the idea that this
condition is controllable, and perhaps curable,
but you find too much online data that tells you
otherwise. Thus, your perceptions about the
illness change overnight, with your emotional
responses and behaviors following suit.
Patients and families with chronic illness
need to make sense of their illness. They con-
struct models of the illness that make the illness
and their life seem logical and rational. Rarely
does a diagnosis of a chronic condition make
sense to patients, so they create a model, in
their minds at least, to see some clarity, some
rationale, some sense. The model is dynamic
throughout the illness, but it is what patients
and families with chronic illness “hang their
hat on”—it helps them cope.
The journal where I kept track of all of
Randy’s medical entries, weight, oral
intake, tube feedings and medications
was very detailed. I believed if I had all
of the details on paper, then perhaps
I could make some sense of what was
going on. Maybe I could figure this out.
—Pamala
Incongruence of Illness
Perceptions Between Patients
and Their Physicians
The formation of the patient’s perception of a
chronic illness is a complex, multidimensional
process involving much more than the physical
symptoms. This complexity makes it difficult
for the physician and nurse to treat the patient
if their professional perceptions do not match
the patient’s illness perceptions. A number of
studies have documented this lack of congruence;
three studies are presented here as examples of
current research.
Ninety-nine patients with multiple sclerosis
(MS) from six sites in Canada rated their relapse
frequency, general health, and quality of life;
reviewed descriptions of eight health domains
and selected the three most important; and
completed a utility assessment. Their neurologists
completed the same instruments. Neurologists
identified physical function domains as im-
portant, while patients placed more emphasis
on mental health domains. There was a lack of
congruence between neurologist and patient
ratings in clinical outcomes (exacerbations
or flares), general health, and quality of life.
Neurologists significantly underestimated the
number of flares, as compared with the patients’
assessment; considered the patients’ health status
better than the patients themselves; and rated the
patients’ quality of life better than the patients
did. These results suggest that neurologists have
 Impact of Chronic Illness on the Patient and Family
an incomplete understanding of patient percep-
tions (Kremenchutzky & Walt, 2013).
Perceptions of patients and gastroenterol-
ogists were compared regarding irritable bowel
syndrome (IBS) and inflammatory bowel disease
(IBD). Physicians and patients had differing
views in terms of disease chronicity, personal
control, and physical and psychological causes
of the illness. The differences in perception may
influence the patient–physician relationship and
could adversely affect treatment adherence and
outcomes (Levy et al., 2014).
A multicenter, cross-sectional, descriptive
study of 450 patients with chronic obstructive
pulmonary disease (COPD) was conducted
to determine the degree of physician–patient
concordance in the perception of the severity of
symptoms. At an aggregate level, breathlessness/
shortness of breath, fatigue/tiredness, and
coughing were identified by both physicians
and patients as being the most relevant symp-
toms. However, according to the concordance
analysis conducted with each patient and his
or her pulmonologist, only 52.8% of each pa-
tient–physician pair agreed when identifying the
symptom that most affected the life of the patient.
Recommendations by the authors suggest that
physicians take a closer and deeper view of the
impact of the disease symptoms on the patient’s
life and adapt that perception to the patient’s
reality as much as possible (Miravitlles, Ferrer,
Baro, Lieonart, & Galera, 2013, p. 7).
Illness Behavior
Illness behavior varies greatly according to
illness-related, patient-related, and physician-related
variables and their complex interactions (Sirri,
Fava, & Sonino, 2013). The disease model may
be the basis for treatment of patients, but it does
not take into account the behavioral responses
of the patient and family. The concept of illness
behavior provides an explanation for clinical
phenomena that do not fit the disease model
(Sirri et al., 2013).
The earliest concept of illness behavior was
described in a 1929 essay by Henry Sigerist.
23
His essay described the “special position of the
sick” (as cited in Young, 2004). Talcott Parsons
developed this concept further and described the
“sick role” in his 1951 work, The Social System.
A brief examination of the sick role provides a
background to illness behavior.
Sick Role
Talcott Parsons viewed health as a functional
prerequisite of society. From his point of view,
sickness was dysfunctional and was a form of
social deviance (Williams, 2005). According to
Parsons, sickness was a response that permitted
individuals to avoid their social responsibilities.
Parsons’s definition of the sick role includes
four major components:
■■ The person is exempt from normal social
roles.
■■ The person is not responsible for his or her
condition.
■■ The person has the obligation to want to
become well.
■■ The person has the obligation to seek and
cooperate with technically competent help
(Williams, 2005, p. 124).
Definitions of Illness Behavior
Using Parsons’s work as a basis, Mechanic’s clas-
sic work (1962) proposed the concept of illness
behavior as symptoms being perceived, evalu-
ated, and acted (or not acted) upon differently
by different persons (p. 189). He believed that it
was essential to understand the subjective per-
ception of the individual, including that person’s
norms, values, fears, and expected rewards and
punishments, to determine how an individual
with illness acts. Mechanic (1995) defined ill-
ness behavior as the “varying ways individuals
respond to bodily indications, how they monitor
internal states, define and interpret symptoms,
make attributions, take remedial actions and
utilize various sources of formal and informal
care” (p. 1208).
A more current definition of illness behavior
suggests that illness behavior “includes all of the
24 Chapter 2 The Illness Experience
individual’s life which stems from the experience
of illness, including changes in functioning and
activity, and uptake of health services and other
welfare benefits” (Wainwright, 2008, p. 76). Simply
put, when an individual defines himself or herself
as ill, different behaviors may be displayed. A
behavior could be the individual’s emotional
response to the diagnosis. The illness behavior
might be a behavior geared toward health, for
example, when an individual with lung cancer
stops smoking.
Influences to Illness Behavior
Increasing age often brings chronic conditions
and disability. However, older individuals in
poor health (as measured by medicine’s standard
measures) often do not see themselves in this way.
What may influence older adults’ perceptions of
their illness and subsequent behavior may not be
considered by healthcare professionals as relevant.
In a study examining narratives of older
adults with cancer, the impact of the disease may
be different than in younger adults. ­Hannum
and Rubinstein (2016) suggest that older adults
diagnosed with cancer may revise their sense of
personal identity (who they are in the world) and
agency (how they act in the world) mediating
some negative psychosocial effects of the disease.
For the older adults in this study, restructuring
time into smaller units was important. Time
became more fractured and fragmented for
them. Data analysis revealed three time periods
for the older adults: Recalled Past (past time),
Perceived Present (illness time), and Imagined
Future (future time). Timeline is one of the
dimensions of the CSM.
Using a sample of 300 patients with vary-
ing chronic illnesses, one group of researchers
(Janowski, Kurpas, Kusz, Mroczek, & Jedynhak,
2013) found differences in the frequency of
health behavior due to gender, with women
demonstrating more healthy habits than men.
In addition, older adults performed more
health-promoting behaviors than younger adults.
Higher education was associated with less frequent
health-­promoting behaviors, and marital status
(e.g., being widowed) was associated with more
frequent health-promoting behaviors.
One’s education and learning, socialization,
and past experience, as defined by one’s social and
cultural background, mediate illness behavior. Past
experiences of observing one’s parents being stoic,
going to work when they were ill, and avoiding
medical help, for example, all influence their
children’s future responses. If children see that
“hard work” and not giving in to illness pays off
with rewards, they assimilate those experiences
and mirror them in their own lives.
One cannot minimize the impact of past
experiences of the individual and family on how
they deal with their own chronic illnesses or with
chronic illnesses developed by their children,
parents, or siblings. Each of those experiences
affects how the individual and family perceive
their current health challenge. These experiences
could be positive as well as negative. In some
cases, a negative healthcare experience with
a relatively minor injury/illness could have a
stronger influence than a positive experience
with serious illness. As healthcare professionals,
we should not underestimate the patient’s and
family’s perception of their illness and its effect
on physical and psychosocial outcomes.
I worry how my adult children will pro-
cess their 64-year-old father’s cancer and
now his death. How have they viewed
his illness experience? How will they
assimilate his death into their lives? This
is now one of their “past experiences”
with chronic illness. Life expectancy
continues to increase, and there are
more cancer survivors than ever, but it
didn’t help their father. Their paternal
great-grandfather died of a stroke in
his late 80s, their paternal grandfather
died of cancer at age 73, and now their
father has died of cancer at age 64. These
past two deaths do not reflect national
statistics. Are they thinking . . . maybe
one of us will die of cancer in our 50s?
—Pamala
Another random document with
no related content on Scribd:
 DANCE ON STILTS AT THE GIRLS’ UNYAGO, NIUCHI

Newala, too, suffers from the distance of its water-supply—at least

the Newala of to-day does; there was once another Newala in a lovely
valley at the foot of the plateau. I visited it and found scarcely a trace
of houses, only a Christian cemetery, with the graves of several
missionaries and their converts, remaining as a monument of its
former glories. But the surroundings are wonderfully beautiful. A
thick grove of splendid mango-trees closes in the weather-worn
crosses and headstones; behind them, combining the useful and the
agreeable, is a whole plantation of lemon-trees covered with ripe
fruit; not the small African kind, but a much larger and also juicier
imported variety, which drops into the hands of the passing traveller,
without calling for any exertion on his part. Old Newala is now under
the jurisdiction of the native pastor, Daudi, at Chingulungulu, who,
as I am on very friendly terms with him, allows me, as a matter of
course, the use of this lemon-grove during my stay at Newala.
 FEET MUTILATED BY THE RAVAGES OF THE “JIGGER”
(Sarcopsylla penetrans)

The water-supply of New Newala is in the bottom of the valley,

some 1,600 feet lower down. The way is not only long and fatiguing,
but the water, when we get it, is thoroughly bad. We are suffering not
only from this, but from the fact that the arrangements at Newala are
nothing short of luxurious. We have a separate kitchen—a hut built
against the boma palisade on the right of the baraza, the interior of
which is not visible from our usual position. Our two cooks were not
long in finding this out, and they consequently do—or rather neglect
to do—what they please. In any case they do not seem to be very
particular about the boiling of our drinking-water—at least I can
attribute to no other cause certain attacks of a dysenteric nature,
from which both Knudsen and I have suffered for some time. If a
man like Omari has to be left unwatched for a moment, he is capable
of anything. Besides this complaint, we are inconvenienced by the
state of our nails, which have become as hard as glass, and crack on
the slightest provocation, and I have the additional infliction of
pimples all over me. As if all this were not enough, we have also, for
the last week been waging war against the jigger, who has found his
Eldorado in the hot sand of the Makonde plateau. Our men are seen
all day long—whenever their chronic colds and the dysentery likewise
raging among them permit—occupied in removing this scourge of
Africa from their feet and trying to prevent the disastrous
consequences of its presence. It is quite common to see natives of
this place with one or two toes missing; many have lost all their toes,
or even the whole front part of the foot, so that a well-formed leg
ends in a shapeless stump. These ravages are caused by the female of
Sarcopsylla penetrans, which bores its way under the skin and there
develops an egg-sac the size of a pea. In all books on the subject, it is
stated that one’s attention is called to the presence of this parasite by
an intolerable itching. This agrees very well with my experience, so
far as the softer parts of the sole, the spaces between and under the
toes, and the side of the foot are concerned, but if the creature
penetrates through the harder parts of the heel or ball of the foot, it
may escape even the most careful search till it has reached maturity.
Then there is no time to be lost, if the horrible ulceration, of which
we see cases by the dozen every day, is to be prevented. It is much
easier, by the way, to discover the insect on the white skin of a
European than on that of a native, on which the dark speck scarcely
shows. The four or five jiggers which, in spite of the fact that I
constantly wore high laced boots, chose my feet to settle in, were
taken out for me by the all-accomplished Knudsen, after which I
thought it advisable to wash out the cavities with corrosive
sublimate. The natives have a different sort of disinfectant—they fill
the hole with scraped roots. In a tiny Makua village on the slope of
the plateau south of Newala, we saw an old woman who had filled all
the spaces under her toe-nails with powdered roots by way of
prophylactic treatment. What will be the result, if any, who can say?
The rest of the many trifling ills which trouble our existence are
really more comic than serious. In the absence of anything else to
smoke, Knudsen and I at last opened a box of cigars procured from
the Indian store-keeper at Lindi, and tried them, with the most
distressing results. Whether they contain opium or some other
narcotic, neither of us can say, but after the tenth puff we were both
“off,” three-quarters stupefied and unspeakably wretched. Slowly we
recovered—and what happened next? Half-an-hour later we were
once more smoking these poisonous concoctions—so insatiable is the
craving for tobacco in the tropics.
Even my present attacks of fever scarcely deserve to be taken
seriously. I have had no less than three here at Newala, all of which
have run their course in an incredibly short time. In the early
afternoon, I am busy with my old natives, asking questions and
making notes. The strong midday coffee has stimulated my spirits to
an extraordinary degree, the brain is active and vigorous, and work
progresses rapidly, while a pleasant warmth pervades the whole
body. Suddenly this gives place to a violent chill, forcing me to put on
my overcoat, though it is only half-past three and the afternoon sun
is at its hottest. Now the brain no longer works with such acuteness
and logical precision; more especially does it fail me in trying to
establish the syntax of the difficult Makua language on which I have
ventured, as if I had not enough to do without it. Under the
circumstances it seems advisable to take my temperature, and I do
so, to save trouble, without leaving my seat, and while going on with
my work. On examination, I find it to be 101·48°. My tutors are
abruptly dismissed and my bed set up in the baraza; a few minutes
later I am in it and treating myself internally with hot water and
lemon-juice.
Three hours later, the thermometer marks nearly 104°, and I make
them carry me back into the tent, bed and all, as I am now perspiring
heavily, and exposure to the cold wind just beginning to blow might
mean a fatal chill. I lie still for a little while, and then find, to my
great relief, that the temperature is not rising, but rather falling. This
is about 7.30 p.m. At 8 p.m. I find, to my unbounded astonishment,
that it has fallen below 98·6°, and I feel perfectly well. I read for an
hour or two, and could very well enjoy a smoke, if I had the
wherewithal—Indian cigars being out of the question.
Having no medical training, I am at a loss to account for this state
of things. It is impossible that these transitory attacks of high fever
should be malarial; it seems more probable that they are due to a
kind of sunstroke. On consulting my note-book, I become more and
more inclined to think this is the case, for these attacks regularly
follow extreme fatigue and long exposure to strong sunshine. They at
least have the advantage of being only short interruptions to my
work, as on the following morning I am always quite fresh and fit.
My treasure of a cook is suffering from an enormous hydrocele which
makes it difficult for him to get up, and Moritz is obliged to keep in
the dark on account of his inflamed eyes. Knudsen’s cook, a raw boy
from somewhere in the bush, knows still less of cooking than Omari;
consequently Nils Knudsen himself has been promoted to the vacant
post. Finding that we had come to the end of our supplies, he began
by sending to Chingulungulu for the four sucking-pigs which we had
bought from Matola and temporarily left in his charge; and when
they came up, neatly packed in a large crate, he callously slaughtered
the biggest of them. The first joint we were thoughtless enough to
entrust for roasting to Knudsen’s mshenzi cook, and it was
consequently uneatable; but we made the rest of the animal into a
jelly which we ate with great relish after weeks of underfeeding,
consuming incredible helpings of it at both midday and evening
meals. The only drawback is a certain want of variety in the tinned
vegetables. Dr. Jäger, to whom the Geographical Commission
entrusted the provisioning of the expeditions—mine as well as his
own—because he had more time on his hands than the rest of us,
seems to have laid in a huge stock of Teltow turnips,[46] an article of
food which is all very well for occasional use, but which quickly palls
when set before one every day; and we seem to have no other tins
left. There is no help for it—we must put up with the turnips; but I
am certain that, once I am home again, I shall not touch them for ten
years to come.
Amid all these minor evils, which, after all, go to make up the
genuine flavour of Africa, there is at least one cheering touch:
Knudsen has, with the dexterity of a skilled mechanic, repaired my 9
× 12 cm. camera, at least so far that I can use it with a little care.
How, in the absence of finger-nails, he was able to accomplish such a
ticklish piece of work, having no tool but a clumsy screw-driver for
taking to pieces and putting together again the complicated
mechanism of the instantaneous shutter, is still a mystery to me; but
he did it successfully. The loss of his finger-nails shows him in a light
contrasting curiously enough with the intelligence evinced by the
above operation; though, after all, it is scarcely surprising after his
ten years’ residence in the bush. One day, at Lindi, he had occasion
to wash a dog, which must have been in need of very thorough
cleansing, for the bottle handed to our friend for the purpose had an
extremely strong smell. Having performed his task in the most
conscientious manner, he perceived with some surprise that the dog
did not appear much the better for it, and was further surprised by
finding his own nails ulcerating away in the course of the next few
days. “How was I to know that carbolic acid has to be diluted?” he
mutters indignantly, from time to time, with a troubled gaze at his
mutilated finger-tips.
 Since we came to Newala we have been making excursions in all
directions through the surrounding country, in accordance with old
habit, and also because the akida Sefu did not get together the tribal
elders from whom I wanted information so speedily as he had
promised. There is, however, no harm done, as, even if seen only
from the outside, the country and people are interesting enough.
The Makonde plateau is like a large rectangular table rounded off
at the corners. Measured from the Indian Ocean to Newala, it is
about seventy-five miles long, and between the Rovuma and the
Lukuledi it averages fifty miles in breadth, so that its superficial area
is about two-thirds of that of the kingdom of Saxony. The surface,
however, is not level, but uniformly inclined from its south-western
edge to the ocean. From the upper edge, on which Newala lies, the
eye ranges for many miles east and north-east, without encountering
any obstacle, over the Makonde bush. It is a green sea, from which
here and there thick clouds of smoke rise, to show that it, too, is
inhabited by men who carry on their tillage like so many other
primitive peoples, by cutting down and burning the bush, and
manuring with the ashes. Even in the radiant light of a tropical day
such a fire is a grand sight.
Much less effective is the impression produced just now by the
great western plain as seen from the edge of the plateau. As often as
time permits, I stroll along this edge, sometimes in one direction,
sometimes in another, in the hope of finding the air clear enough to
let me enjoy the view; but I have always been disappointed.
Wherever one looks, clouds of smoke rise from the burning bush,
and the air is full of smoke and vapour. It is a pity, for under more
favourable circumstances the panorama of the whole country up to
the distant Majeje hills must be truly magnificent. It is of little use
taking photographs now, and an outline sketch gives a very poor idea
of the scenery. In one of these excursions I went out of my way to
make a personal attempt on the Makonde bush. The present edge of
the plateau is the result of a far-reaching process of destruction
through erosion and denudation. The Makonde strata are
everywhere cut into by ravines, which, though short, are hundreds of
yards in depth. In consequence of the loose stratification of these
beds, not only are the walls of these ravines nearly vertical, but their
upper end is closed by an equally steep escarpment, so that the
western edge of the Makonde plateau is hemmed in by a series of
deep, basin-like valleys. In order to get from one side of such a ravine
to the other, I cut my way through the bush with a dozen of my men.
It was a very open part, with more grass than scrub, but even so the
short stretch of less than two hundred yards was very hard work; at
the end of it the men’s calicoes were in rags and they themselves
bleeding from hundreds of scratches, while even our strong khaki
suits had not escaped scatheless.

NATIVE PATH THROUGH THE MAKONDE BUSH, NEAR

MAHUTA

I see increasing reason to believe that the view formed some time
back as to the origin of the Makonde bush is the correct one. I have
no doubt that it is not a natural product, but the result of human
occupation. Those parts of the high country where man—as a very
slight amount of practice enables the eye to perceive at once—has not
yet penetrated with axe and hoe, are still occupied by a splendid
timber forest quite able to sustain a comparison with our mixed
forests in Germany. But wherever man has once built his hut or tilled
his field, this horrible bush springs up. Every phase of this process
may be seen in the course of a couple of hours’ walk along the main
road. From the bush to right or left, one hears the sound of the axe—
not from one spot only, but from several directions at once. A few
steps further on, we can see what is taking place. The brush has been
cut down and piled up in heaps to the height of a yard or more,
between which the trunks of the large trees stand up like the last
pillars of a magnificent ruined building. These, too, present a
melancholy spectacle: the destructive Makonde have ringed them—
cut a broad strip of bark all round to ensure their dying off—and also
piled up pyramids of brush round them. Father and son, mother and
son-in-law, are chopping away perseveringly in the background—too
busy, almost, to look round at the white stranger, who usually excites
so much interest. If you pass by the same place a week later, the piles
of brushwood have disappeared and a thick layer of ashes has taken
the place of the green forest. The large trees stretch their
smouldering trunks and branches in dumb accusation to heaven—if
they have not already fallen and been more or less reduced to ashes,
perhaps only showing as a white stripe on the dark ground.
This work of destruction is carried out by the Makonde alike on the
virgin forest and on the bush which has sprung up on sites already
cultivated and deserted. In the second case they are saved the trouble
of burning the large trees, these being entirely absent in the
secondary bush.
After burning this piece of forest ground and loosening it with the
hoe, the native sows his corn and plants his vegetables. All over the
country, he goes in for bed-culture, which requires, and, in fact,
receives, the most careful attention. Weeds are nowhere tolerated in
the south of German East Africa. The crops may fail on the plains,
where droughts are frequent, but never on the plateau with its
abundant rains and heavy dews. Its fortunate inhabitants even have
the satisfaction of seeing the proud Wayao and Wamakua working
for them as labourers, driven by hunger to serve where they were
accustomed to rule.
But the light, sandy soil is soon exhausted, and would yield no
harvest the second year if cultivated twice running. This fact has
been familiar to the native for ages; consequently he provides in
time, and, while his crop is growing, prepares the next plot with axe
and firebrand. Next year he plants this with his various crops and
lets the first piece lie fallow. For a short time it remains waste and
desolate; then nature steps in to repair the destruction wrought by
man; a thousand new growths spring out of the exhausted soil, and
even the old stumps put forth fresh shoots. Next year the new growth
is up to one’s knees, and in a few years more it is that terrible,
impenetrable bush, which maintains its position till the black
occupier of the land has made the round of all the available sites and
come back to his starting point.
The Makonde are, body and soul, so to speak, one with this bush.
According to my Yao informants, indeed, their name means nothing
else but “bush people.” Their own tradition says that they have been
settled up here for a very long time, but to my surprise they laid great
stress on an original immigration. Their old homes were in the
south-east, near Mikindani and the mouth of the Rovuma, whence
their peaceful forefathers were driven by the continual raids of the
Sakalavas from Madagascar and the warlike Shirazis[47] of the coast,
to take refuge on the almost inaccessible plateau. I have studied
African ethnology for twenty years, but the fact that changes of
population in this apparently quiet and peaceable corner of the earth
could have been occasioned by outside enterprises taking place on
the high seas, was completely new to me. It is, no doubt, however,
correct.
The charming tribal legend of the Makonde—besides informing us
of other interesting matters—explains why they have to live in the
thickest of the bush and a long way from the edge of the plateau,
instead of making their permanent homes beside the purling brooks
and springs of the low country.
“The place where the tribe originated is Mahuta, on the southern
side of the plateau towards the Rovuma, where of old time there was
nothing but thick bush. Out of this bush came a man who never
washed himself or shaved his head, and who ate and drank but little.
He went out and made a human figure from the wood of a tree
growing in the open country, which he took home to his abode in the
bush and there set it upright. In the night this image came to life and
was a woman. The man and woman went down together to the
Rovuma to wash themselves. Here the woman gave birth to a still-
born child. They left that place and passed over the high land into the
valley of the Mbemkuru, where the woman had another child, which
was also born dead. Then they returned to the high bush country of
Mahuta, where the third child was born, which lived and grew up. In
course of time, the couple had many more children, and called
themselves Wamatanda. These were the ancestral stock of the
Makonde, also called Wamakonde,[48] i.e., aborigines. Their
forefather, the man from the bush, gave his children the command to
bury their dead upright, in memory of the mother of their race who
was cut out of wood and awoke to life when standing upright. He also
warned them against settling in the valleys and near large streams,
for sickness and death dwelt there. They were to make it a rule to
have their huts at least an hour’s walk from the nearest watering-
place; then their children would thrive and escape illness.”
The explanation of the name Makonde given by my informants is
somewhat different from that contained in the above legend, which I
extract from a little book (small, but packed with information), by
Pater Adams, entitled Lindi und sein Hinterland. Otherwise, my
results agree exactly with the statements of the legend. Washing?
Hapana—there is no such thing. Why should they do so? As it is, the
supply of water scarcely suffices for cooking and drinking; other
people do not wash, so why should the Makonde distinguish himself
by such needless eccentricity? As for shaving the head, the short,
woolly crop scarcely needs it,[49] so the second ancestral precept is
likewise easy enough to follow. Beyond this, however, there is
nothing ridiculous in the ancestor’s advice. I have obtained from
various local artists a fairly large number of figures carved in wood,
ranging from fifteen to twenty-three inches in height, and
representing women belonging to the great group of the Mavia,
Makonde, and Matambwe tribes. The carving is remarkably well
done and renders the female type with great accuracy, especially the
keloid ornamentation, to be described later on. As to the object and
meaning of their works the sculptors either could or (more probably)
would tell me nothing, and I was forced to content myself with the
scanty information vouchsafed by one man, who said that the figures
were merely intended to represent the nembo—the artificial
deformations of pelele, ear-discs, and keloids. The legend recorded
by Pater Adams places these figures in a new light. They must surely
be more than mere dolls; and we may even venture to assume that
they are—though the majority of present-day Makonde are probably
unaware of the fact—representations of the tribal ancestress.
 The references in the legend to the descent from Mahuta to the
Rovuma, and to a journey across the highlands into the Mbekuru
valley, undoubtedly indicate the previous history of the tribe, the
travels of the ancestral pair typifying the migrations of their
descendants. The descent to the neighbouring Rovuma valley, with
its extraordinary fertility and great abundance of game, is intelligible
at a glance—but the crossing of the Lukuledi depression, the ascent
to the Rondo Plateau and the descent to the Mbemkuru, also lie
within the bounds of probability, for all these districts have exactly
the same character as the extreme south. Now, however, comes a
point of especial interest for our bacteriological age. The primitive
Makonde did not enjoy their lives in the marshy river-valleys.
Disease raged among them, and many died. It was only after they
had returned to their original home near Mahuta, that the health
conditions of these people improved. We are very apt to think of the
African as a stupid person whose ignorance of nature is only equalled
by his fear of it, and who looks on all mishaps as caused by evil
spirits and malignant natural powers. It is much more correct to
assume in this case that the people very early learnt to distinguish
districts infested with malaria from those where it is absent.
This knowledge is crystallized in the
ancestral warning against settling in the
valleys and near the great waters, the
dwelling-places of disease and death. At the
same time, for security against the hostile
Mavia south of the Rovuma, it was enacted
that every settlement must be not less than a
certain distance from the southern edge of the
plateau. Such in fact is their mode of life at the
present day. It is not such a bad one, and
certainly they are both safer and more
comfortable than the Makua, the recent
intruders from the south, who have made USUAL METHOD OF
good their footing on the western edge of the CLOSING HUT-DOOR
plateau, extending over a fairly wide belt of
country. Neither Makua nor Makonde show in their dwellings
anything of the size and comeliness of the Yao houses in the plain,
especially at Masasi, Chingulungulu and Zuza’s. Jumbe Chauro, a
Makonde hamlet not far from Newala, on the road to Mahuta, is the
most important settlement of the tribe I have yet seen, and has fairly
spacious huts. But how slovenly is their construction compared with
the palatial residences of the elephant-hunters living in the plain.
The roofs are still more untidy than in the general run of huts during
the dry season, the walls show here and there the scanty beginnings
or the lamentable remains of the mud plastering, and the interior is a
veritable dog-kennel; dirt, dust and disorder everywhere. A few huts
only show any attempt at division into rooms, and this consists
merely of very roughly-made bamboo partitions. In one point alone
have I noticed any indication of progress—in the method of fastening
the door. Houses all over the south are secured in a simple but
ingenious manner. The door consists of a set of stout pieces of wood
or bamboo, tied with bark-string to two cross-pieces, and moving in
two grooves round one of the door-posts, so as to open inwards. If
the owner wishes to leave home, he takes two logs as thick as a man’s
upper arm and about a yard long. One of these is placed obliquely
against the middle of the door from the inside, so as to form an angle
of from 60° to 75° with the ground. He then places the second piece
horizontally across the first, pressing it downward with all his might.
It is kept in place by two strong posts planted in the ground a few
inches inside the door. This fastening is absolutely safe, but of course
cannot be applied to both doors at once, otherwise how could the
owner leave or enter his house? I have not yet succeeded in finding
out how the back door is fastened.

MAKONDE LOCK AND KEY AT JUMBE CHAURO

 This is the general way of closing a house. The Makonde at Jumbe
Chauro, however, have a much more complicated, solid and original
one. Here, too, the door is as already described, except that there is
only one post on the inside, standing by itself about six inches from
one side of the doorway. Opposite this post is a hole in the wall just
large enough to admit a man’s arm. The door is closed inside by a
large wooden bolt passing through a hole in this post and pressing
with its free end against the door. The other end has three holes into
which fit three pegs running in vertical grooves inside the post. The
door is opened with a wooden key about a foot long, somewhat
curved and sloped off at the butt; the other end has three pegs
corresponding to the holes, in the bolt, so that, when it is thrust
through the hole in the wall and inserted into the rectangular
opening in the post, the pegs can be lifted and the bolt drawn out.[50]

MODE OF INSERTING THE KEY

With no small pride first one householder and then a second

showed me on the spot the action of this greatest invention of the
Makonde Highlands. To both with an admiring exclamation of
“Vizuri sana!” (“Very fine!”). I expressed the wish to take back these
marvels with me to Ulaya, to show the Wazungu what clever fellows
the Makonde are. Scarcely five minutes after my return to camp at
Newala, the two men came up sweating under the weight of two
heavy logs which they laid down at my feet, handing over at the same
time the keys of the fallen fortress. Arguing, logically enough, that if
the key was wanted, the lock would be wanted with it, they had taken
their axes and chopped down the posts—as it never occurred to them
to dig them out of the ground and so bring them intact. Thus I have
two badly damaged specimens, and the owners, instead of praise,
come in for a blowing-up.
The Makua huts in the environs of Newala are especially
miserable; their more than slovenly construction reminds one of the
temporary erections of the Makua at Hatia’s, though the people here
have not been concerned in a war. It must therefore be due to
congenital idleness, or else to the absence of a powerful chief. Even
the baraza at Mlipa’s, a short hour’s walk south-east of Newala,
shares in this general neglect. While public buildings in this country
are usually looked after more or less carefully, this is in evident
danger of being blown over by the first strong easterly gale. The only
attractive object in this whole district is the grave of the late chief
Mlipa. I visited it in the morning, while the sun was still trying with
partial success to break through the rolling mists, and the circular
grove of tall euphorbias, which, with a broken pot, is all that marks
the old king’s resting-place, impressed one with a touch of pathos.
Even my very materially-minded carriers seemed to feel something
of the sort, for instead of their usual ribald songs, they chanted
solemnly, as we marched on through the dense green of the Makonde
bush:—
 “We shall arrive with the great master; we stand in a row and have
no fear about getting our food and our money from the Serkali (the
Government). We are not afraid; we are going along with the great
master, the lion; we are going down to the coast and back.”
With regard to the characteristic features of the various tribes here
on the western edge of the plateau, I can arrive at no other
conclusion than the one already come to in the plain, viz., that it is
impossible for anyone but a trained anthropologist to assign any
given individual at once to his proper tribe. In fact, I think that even
an anthropological specialist, after the most careful examination,
might find it a difficult task to decide. The whole congeries of peoples
collected in the region bounded on the west by the great Central
African rift, Tanganyika and Nyasa, and on the east by the Indian
Ocean, are closely related to each other—some of their languages are
only distinguished from one another as dialects of the same speech,
and no doubt all the tribes present the same shape of skull and
structure of skeleton. Thus, surely, there can be no very striking
differences in outward appearance.
 Even did such exist, I should have no time
to concern myself with them, for day after day,
I have to see or hear, as the case may be—in
any case to grasp and record—an
extraordinary number of ethnographic
phenomena. I am almost disposed to think it
fortunate that some departments of inquiry, at
least, are barred by external circumstances.
Chief among these is the subject of iron-
working. We are apt to think of Africa as a
country where iron ore is everywhere, so to
speak, to be picked up by the roadside, and
where it would be quite surprising if the
inhabitants had not learnt to smelt the
material ready to their hand. In fact, the
knowledge of this art ranges all over the
continent, from the Kabyles in the north to the
Kafirs in the south. Here between the Rovuma
and the Lukuledi the conditions are not so
favourable. According to the statements of the
Makonde, neither ironstone nor any other
form of iron ore is known to them. They have
not therefore advanced to the art of smelting
the metal, but have hitherto bought all their
THE ANCESTRESS OF
THE MAKONDE
iron implements from neighbouring tribes.
Even in the plain the inhabitants are not much
better off. Only one man now living is said to
understand the art of smelting iron. This old fundi lives close to
Huwe, that isolated, steep-sided block of granite which rises out of
the green solitude between Masasi and Chingulungulu, and whose
jagged and splintered top meets the traveller’s eye everywhere. While
still at Masasi I wished to see this man at work, but was told that,
frightened by the rising, he had retired across the Rovuma, though
he would soon return. All subsequent inquiries as to whether the
fundi had come back met with the genuine African answer, “Bado”
(“Not yet”).
 BRAZIER

Some consolation was afforded me by a brassfounder, whom I

came across in the bush near Akundonde’s. This man is the favourite
of women, and therefore no doubt of the gods; he welds the glittering
brass rods purchased at the coast into those massive, heavy rings
which, on the wrists and ankles of the local fair ones, continually give
me fresh food for admiration. Like every decent master-craftsman he
had all his tools with him, consisting of a pair of bellows, three
crucibles and a hammer—nothing more, apparently. He was quite
willing to show his skill, and in a twinkling had fixed his bellows on
the ground. They are simply two goat-skins, taken off whole, the four
legs being closed by knots, while the upper opening, intended to
admit the air, is kept stretched by two pieces of wood. At the lower
end of the skin a smaller opening is left into which a wooden tube is
stuck. The fundi has quickly borrowed a heap of wood-embers from
the nearest hut; he then fixes the free ends of the two tubes into an
earthen pipe, and clamps them to the ground by means of a bent
piece of wood. Now he fills one of his small clay crucibles, the dross
on which shows that they have been long in use, with the yellow
material, places it in the midst of the embers, which, at present are
only faintly glimmering, and begins his work. In quick alternation
the smith’s two hands move up and down with the open ends of the
bellows; as he raises his hand he holds the slit wide open, so as to let
the air enter the skin bag unhindered. In pressing it down he closes
the bag, and the air puffs through the bamboo tube and clay pipe into
the fire, which quickly burns up. The smith, however, does not keep
on with this work, but beckons to another man, who relieves him at
the bellows, while he takes some more tools out of a large skin pouch
carried on his back. I look on in wonder as, with a smooth round
stick about the thickness of a finger, he bores a few vertical holes into
the clean sand of the soil. This should not be difficult, yet the man
seems to be taking great pains over it. Then he fastens down to the
ground, with a couple of wooden clamps, a neat little trough made by
splitting a joint of bamboo in half, so that the ends are closed by the
two knots. At last the yellow metal has attained the right consistency,
and the fundi lifts the crucible from the fire by means of two sticks
split at the end to serve as tongs. A short swift turn to the left—a
tilting of the crucible—and the molten brass, hissing and giving forth
clouds of smoke, flows first into the bamboo mould and then into the
holes in the ground.
The technique of this backwoods craftsman may not be very far
advanced, but it cannot be denied that he knows how to obtain an
adequate result by the simplest means. The ladies of highest rank in
this country—that is to say, those who can afford it, wear two kinds
of these massive brass rings, one cylindrical, the other semicircular
in section. The latter are cast in the most ingenious way in the
bamboo mould, the former in the circular hole in the sand. It is quite
a simple matter for the fundi to fit these bars to the limbs of his fair
customers; with a few light strokes of his hammer he bends the
pliable brass round arm or ankle without further inconvenience to
the wearer.
SHAPING THE POT

SMOOTHING WITH MAIZE-COB

CUTTING THE EDGE

 FINISHING THE BOTTOM

LAST SMOOTHING BEFORE

BURNING

FIRING THE BRUSH-PILE

 LIGHTING THE FARTHER SIDE OF
THE PILE

TURNING THE RED-HOT VESSEL

NYASA WOMAN MAKING POTS AT MASASI

Pottery is an art which must always and everywhere excite the
interest of the student, just because it is so intimately connected with
the development of human culture, and because its relics are one of
the principal factors in the reconstruction of our own condition in
prehistoric times. I shall always remember with pleasure the two or
three afternoons at Masasi when Salim Matola’s mother, a slightly-
built, graceful, pleasant-looking woman, explained to me with
touching patience, by means of concrete illustrations, the ceramic art
of her people. The only implements for this primitive process were a
lump of clay in her left hand, and in the right a calabash containing
the following valuables: the fragment of a maize-cob stripped of all
its grains, a smooth, oval pebble, about the size of a pigeon’s egg, a
few chips of gourd-shell, a bamboo splinter about the length of one’s
hand, a small shell, and a bunch of some herb resembling spinach.
 Nothing more. The woman scraped with the
shell a round, shallow hole in the soft, fine
sand of the soil, and, when an active young
girl had filled the calabash with water for her,
she began to knead the clay. As if by magic it
gradually assumed the shape of a rough but
already well-shaped vessel, which only wanted
a little touching up with the instruments
before mentioned. I looked out with the
MAKUA WOMAN closest attention for any indication of the use
MAKING A POT. of the potter’s wheel, in however rudimentary
SHOWS THE a form, but no—hapana (there is none). The
BEGINNINGS OF THE embryo pot stood firmly in its little
POTTER’S WHEEL
depression, and the woman walked round it in
a stooping posture, whether she was removing
small stones or similar foreign bodies with the maize-cob, smoothing
the inner or outer surface with the splinter of bamboo, or later, after
letting it dry for a day, pricking in the ornamentation with a pointed
bit of gourd-shell, or working out the bottom, or cutting the edge
with a sharp bamboo knife, or giving the last touches to the finished
vessel. This occupation of the women is infinitely toilsome, but it is
without doubt an accurate reproduction of the process in use among
our ancestors of the Neolithic and Bronze ages.
There is no doubt that the invention of pottery, an item in human
progress whose importance cannot be over-estimated, is due to
women. Rough, coarse and unfeeling, the men of the horde range
over the countryside. When the united cunning of the hunters has
succeeded in killing the game; not one of them thinks of carrying
home the spoil. A bright fire, kindled by a vigorous wielding of the
drill, is crackling beside them; the animal has been cleaned and cut
up secundum artem, and, after a slight singeing, will soon disappear
under their sharp teeth; no one all this time giving a single thought
to wife or child.
To what shifts, on the other hand, the primitive wife, and still more
the primitive mother, was put! Not even prehistoric stomachs could
endure an unvarying diet of raw food. Something or other suggested
the beneficial effect of hot water on the majority of approved but
indigestible dishes. Perhaps a neighbour had tried holding the hard
roots or tubers over the fire in a calabash filled with water—or maybe
an ostrich-egg-shell, or a hastily improvised vessel of bark. They
became much softer and more palatable than they had previously
been; but, unfortunately, the vessel could not stand the fire and got
charred on the outside. That can be remedied, thought our
ancestress, and plastered a layer of wet clay round a similar vessel.
This is an improvement; the cooking utensil remains uninjured, but
the heat of the fire has shrunk it, so that it is loose in its shell. The
next step is to detach it, so, with a firm grip and a jerk, shell and
kernel are separated, and pottery is invented. Perhaps, however, the
discovery which led to an intelligent use of the burnt-clay shell, was
made in a slightly different way. Ostrich-eggs and calabashes are not
to be found in every part of the world, but everywhere mankind has
arrived at the art of making baskets out of pliant materials, such as
bark, bast, strips of palm-leaf, supple twigs, etc. Our inventor has no
water-tight vessel provided by nature. “Never mind, let us line the
basket with clay.” This answers the purpose, but alas! the basket gets
burnt over the blazing fire, the woman watches the process of
cooking with increasing uneasiness, fearing a leak, but no leak
appears. The food, done to a turn, is eaten with peculiar relish; and
the cooking-vessel is examined, half in curiosity, half in satisfaction
at the result. The plastic clay is now hard as stone, and at the same
time looks exceedingly well, for the neat plaiting of the burnt basket
is traced all over it in a pretty pattern. Thus, simultaneously with
pottery, its ornamentation was invented.
Primitive woman has another claim to respect. It was the man,
roving abroad, who invented the art of producing fire at will, but the
woman, unable to imitate him in this, has been a Vestal from the
earliest times. Nothing gives so much trouble as the keeping alight of
the smouldering brand, and, above all, when all the men are absent
from the camp. Heavy rain-clouds gather, already the first large
drops are falling, the first gusts of the storm rage over the plain. The
little flame, a greater anxiety to the woman than her own children,
flickers unsteadily in the blast. What is to be done? A sudden thought
occurs to her, and in an instant she has constructed a primitive hut
out of strips of bark, to protect the flame against rain and wind.
This, or something very like it, was the way in which the principle
of the house was discovered; and even the most hardened misogynist
cannot fairly refuse a woman the credit of it. The protection of the
hearth-fire from the weather is the germ from which the human
dwelling was evolved. Men had little, if any share, in this forward
step, and that only at a late stage. Even at the present day, the
plastering of the housewall with clay and the manufacture of pottery
are exclusively the women’s business. These are two very significant
survivals. Our European kitchen-garden, too, is originally a woman’s
invention, and the hoe, the primitive instrument of agriculture, is,
characteristically enough, still used in this department. But the
noblest achievement which we owe to the other sex is unquestionably
the art of cookery. Roasting alone—the oldest process—is one for
which men took the hint (a very obvious one) from nature. It must
have been suggested by the scorched carcase of some animal
overtaken by the destructive forest-fires. But boiling—the process of
improving organic substances by the help of water heated to boiling-
point—is a much later discovery. It is so recent that it has not even
yet penetrated to all parts of the world. The Polynesians understand
how to steam food, that is, to cook it, neatly wrapped in leaves, in a
hole in the earth between hot stones, the air being excluded, and
(sometimes) a few drops of water sprinkled on the stones; but they
do not understand boiling.
To come back from this digression, we find that the slender Nyasa
woman has, after once more carefully examining the finished pot,
put it aside in the shade to dry. On the following day she sends me
word by her son, Salim Matola, who is always on hand, that she is
going to do the burning, and, on coming out of my house, I find her
already hard at work. She has spread on the ground a layer of very
dry sticks, about as thick as one’s thumb, has laid the pot (now of a
yellowish-grey colour) on them, and is piling brushwood round it.
My faithful Pesa mbili, the mnyampara, who has been standing by,
most obligingly, with a lighted stick, now hands it to her. Both of
them, blowing steadily, light the pile on the lee side, and, when the
flame begins to catch, on the weather side also. Soon the whole is in a
blaze, but the dry fuel is quickly consumed and the fire dies down, so
that we see the red-hot vessel rising from the ashes. The woman
turns it continually with a long stick, sometimes one way and
sometimes another, so that it may be evenly heated all over. In
twenty minutes she rolls it out of the ash-heap, takes up the bundle
of spinach, which has been lying for two days in a jar of water, and
sprinkles the red-hot clay with it. The places where the drops fall are
marked by black spots on the uniform reddish-brown surface. With a
sigh of relief, and with visible satisfaction, the woman rises to an
erect position; she is standing just in a line between me and the fire,
from which a cloud of smoke is just rising: I press the ball of my
camera, the shutter clicks—the apotheosis is achieved! Like a
priestess, representative of her inventive sex, the graceful woman
stands: at her feet the hearth-fire she has given us beside her the
invention she has devised for us, in the background the home she has
built for us.
At Newala, also, I have had the manufacture of pottery carried on
in my presence. Technically the process is better than that already
described, for here we find the beginnings of the potter’s wheel,
which does not seem to exist in the plains; at least I have seen
nothing of the sort. The artist, a frightfully stupid Makua woman, did
not make a depression in the ground to receive the pot she was about
to shape, but used instead a large potsherd. Otherwise, she went to
work in much the same way as Salim’s mother, except that she saved
herself the trouble of walking round and round her work by squatting
at her ease and letting the pot and potsherd rotate round her; this is
surely the first step towards a machine. But it does not follow that
the pot was improved by the process. It is true that it was beautifully
rounded and presented a very creditable appearance when finished,
but the numerous large and small vessels which I have seen, and, in
part, collected, in the “less advanced” districts, are no less so. We
moderns imagine that instruments of precision are necessary to
produce excellent results. Go to the prehistoric collections of our
museums and look at the pots, urns and bowls of our ancestors in the
dim ages of the past, and you will at once perceive your error.
MAKING LONGITUDINAL CUT IN
BARK

DRAWING THE BARK OFF THE LOG

REMOVING THE OUTER BARK

 BEATING THE BARK

WORKING THE BARK-CLOTH AFTER BEATING, TO MAKE IT

SOFT

MANUFACTURE OF BARK-CLOTH AT NEWALA

To-day, nearly the whole population of German East Africa is
clothed in imported calico. This was not always the case; even now in
some parts of the north dressed skins are still the prevailing wear,
and in the north-western districts—east and north of Lake
Tanganyika—lies a zone where bark-cloth has not yet been
superseded. Probably not many generations have passed since such
bark fabrics and kilts of skins were the only clothing even in the
south. Even to-day, large quantities of this bright-red or drab
material are still to be found; but if we wish to see it, we must look in
the granaries and on the drying stages inside the native huts, where
it serves less ambitious uses as wrappings for those seeds and fruits
which require to be packed with special care. The salt produced at
Masasi, too, is packed for transport to a distance in large sheets of
bark-cloth. Wherever I found it in any degree possible, I studied the
process of making this cloth. The native requisitioned for the
purpose arrived, carrying a log between two and three yards long and
as thick as his thigh, and nothing else except a curiously-shaped
mallet and the usual long, sharp and pointed knife which all men and
boys wear in a belt at their backs without a sheath—horribile dictu!
[51]
Silently he squats down before me, and with two rapid cuts has
drawn a couple of circles round the log some two yards apart, and
slits the bark lengthwise between them with the point of his knife.
With evident care, he then scrapes off the outer rind all round the
log, so that in a quarter of an hour the inner red layer of the bark
shows up brightly-coloured between the two untouched ends. With
some trouble and much caution, he now loosens the bark at one end,
and opens the cylinder. He then stands up, takes hold of the free
edge with both hands, and turning it inside out, slowly but steadily
pulls it off in one piece. Now comes the troublesome work of
scraping all superfluous particles of outer bark from the outside of
the long, narrow piece of material, while the inner side is carefully
scrutinised for defective spots. At last it is ready for beating. Having
signalled to a friend, who immediately places a bowl of water beside
him, the artificer damps his sheet of bark all over, seizes his mallet,
lays one end of the stuff on the smoothest spot of the log, and
hammers away slowly but continuously. “Very simple!” I think to
myself. “Why, I could do that, too!”—but I am forced to change my
opinions a little later on; for the beating is quite an art, if the fabric is
not to be beaten to pieces. To prevent the breaking of the fibres, the
stuff is several times folded across, so as to interpose several
thicknesses between the mallet and the block. At last the required
state is reached, and the fundi seizes the sheet, still folded, by both
ends, and wrings it out, or calls an assistant to take one end while he
holds the other. The cloth produced in this way is not nearly so fine
and uniform in texture as the famous Uganda bark-cloth, but it is
quite soft, and, above all, cheap.
Now, too, I examine the mallet. My craftsman has been using the
simpler but better form of this implement, a conical block of some
hard wood, its base—the striking surface—being scored across and
across with more or less deeply-cut grooves, and the handle stuck
into a hole in the middle. The other and earlier form of mallet is
shaped in the same way, but the head is fastened by an ingenious
network of bark strips into the split bamboo serving as a handle. The
observation so often made, that ancient customs persist longest in
connection with religious ceremonies and in the life of children, here
finds confirmation. As we shall soon see, bark-cloth is still worn
during the unyago,[52] having been prepared with special solemn
ceremonies; and many a mother, if she has no other garment handy,
will still put her little one into a kilt of bark-cloth, which, after all,
looks better, besides being more in keeping with its African
surroundings, than the ridiculous bit of print from Ulaya.
MAKUA WOMEN