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C H A P T E R 1 1
Living with Chronic Illness
Lecture Outline
I. The Impact of Chronic Illness
Chronic illnesses present a major problem, affecting not only the patient but also friends and
family members. The diagnosis of a chronic disease may be conceptualized as a crisis or as a
transition in the person’s life. Adjustment to the illness often changes the way patients see
themselves, produces financial strain, and disrupts established patterns of personal and social
behaviors.
A. Impact on the Patient
Chronically ill patients must cope not only with the symptoms of their illness but also
manage the stress of treatment, live as normal a life as possible, and face the possibility of
B. Impact on the Family
Chronic illness requires adaptation for families as well as for individuals. For families
with chronically ill children, parents must adapt to treatment and face the loss of their
children’s health. For adults, a chronically ill family member presents the need for caregiving,
which alters relationships with family members. Feelings of grief and loss are common, and
family members benefit from finding positive ways to deal with these emotions.
II. Living with Alzheimer’s Disease
Alzheimer’s disease is a degenerative disease of the brain and a major source of impairment
among older people. Two forms of the disease exist: one that typically occurs before age 60 and
the other that usually begins after age 60. The early-onset variety, which is caused by a known
A. Helping the Patient
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Alzheimer’s disease is presently incurable, and drugs have only limited ability to slow the
progression of the disease. Symptoms of the disease can be managed by changing those
situations in the patients’ environment that prompt undesirable behavior. In addition, several
psychological interventions have been used to enhance memory and to help patients cope
with depression and problems of disorientation.
B. Helping the Family
The symptoms of Alzheimer’s disease are particularly distressing to family members.
Emotional outbursts, suspiciousness, anger, and agitation by a previously gentle, loving
III. Adjusting to Diabetes
Type 1 diabetes was called juvenile-onset diabetes and Type 2 diabetes was referred to as
adult-onset diabetes, but with increased obesity among American youth, many children as young
as 8 or 9 years old are now developing Type 2 (adult-onset) diabetes. Thus, the terms insulin-
dependent or Type 1 and noninsulin-dependent or Type 2 are the current terminology. Both types
of diabetes mellitus require changes in lifestyle, including the frequent monitoring of blood
glucose and strict compliance to treatment regimen. (See Table 11.2 for characteristics of both
types of diabetes.)
A. The Physiology of Diabetes
Diabetes mellitus is a disorder caused by an insulin deficiency. The islet cells of the
pancreas produce glucagon, which stimulates the release of glucose, and insulin, which
allows cells to use glucose. If the islet cells do not produce adequate insulin, excessive sugar
accumulates in the blood and urine. Patients’ inability to regulate blood sugar often causes
diabetics to develop other health problems such as cardiovascular disease, retina damage, and
kidney diseases. If unregulated, diabetes may cause blindness, coma, and even death.
B. The Impact of Diabetes
The diagnosis of Type 1 diabetes affects both the child and the parents. The child is
depression.
C. Health Psychology’s Involvement with Diabetes
Health psychologists are involved in both investigating and treating diabetes. Research
has concentrated on stress as a factor in the development of diabetes and in the regulation of
glucose metabolism, the ways that diabetics conceptualize their disease, the dynamics of
families with diabetic children, and reasons for noncompliance. Finding ways to help people
with diabetes manage their care is an important goal for health psychologists.
IV. The Impact of Asthma
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About 7.7% of adults in the United States have asthma, but the rate is the highest among
African Americans and for children and adolescents between ages 5 and 17. The death rate from
asthma is not high, but it is the largest cause of disability among children.
A. The Disease of Asthma
Asthma is a chronic disease that causes constriction of the bronchial tubes, preventing air
from passing freely. People with asthma may go for long periods of time without any
problems in breathing, but an attack may occur at any time. The disease of asthma may be
B. Managing Asthma
Like diabetes, asthma can be managed, but it requires daily attention to symptoms and
frequent contact with the health care system. Managing asthma requires a variety of
medications as well as learning personal triggers and avoiding them. Drugs for asthma often
have unpleasant side effects, such as weight gain and lack of energy, conditions that make
adherence difficult. Asthma attacks can cause respiratory failure, which may be fatal, making
the experience frightening and dangerous. Also like diabetes, teaching self-care skills is a
major goal for health psychologists.
V. Dealing with HIV and AIDS
Acquired immune deficiency syndrome (AIDS) is a disorder produced by the human
immunodeficiency virus (HIV), which causes the immune system to lose its effectiveness and
leaves the body defenseless against bacterial, viral, fungal, parasitic, cancerous, and other
opportunistic diseases.
A. Incidence and Mortality Rates for HIV/AIDS
Although AIDS may not be a new disease, its existence was not known until the early
1980s, when it began to spread and kill people. In 1992, the CDC changed the definition of
AIDS, bringing uniformity to the definition but also increasing the number of cases.
However, since 1993, mortality rates from HIV/AIDS have declined dramatically in the
United States. Part of the drop in mortality results from antiretroviral drugs treatments that
prolong the lives of infected people. Another part of the drop comes from behavioral changes
that led to a sharp decline in incidence of HIV. Because people are now living longer with
HIV, the prevalence of the disease continues to rise (see Figure 11.1).
B. Symptoms of HIV and AIDS
HIV progresses over a decade or more. During the first phase, people often experience
Living with Chronic Illness
pneumonia, tuberculosis, toxoplasmic encephalitis, and Kaposi’s sarcoma are infections that
cause death among AIDS patients.
C. The Transmission of HIV
AIDS spreads only through direct contact. No evidence exists that any sort of casual
contact spreads the infection. The main routes of infection are from person to person during
sex, from mother to child during pregnancy or birth, and from direct contact with blood or
blood products. Exposure to infected blood through transfusions is no longer a major source
of HIV transmission.
1. Male-Male Sexual Contact
Male-male sexual contact continues to account for the largest number of HIV
2. Injection Drug Use
Sharing unsterilized needles is a practice that allows the direct transmission of blood
3. Heterosexual Contact
Heterosexual contact is the leading source of HIV in Africa and the fastest growing
source in the United States, and women are at greater risk from this mode of transmission
4. Transmission during the Birth Process
Children born to HIV infected mothers have a risk for contracting the virus during the
birth process or from breastfeeding. These children usually suffer from a variety of
developmental difficulties. Women who undergo antiretroviral therapy have a very low
rate of transmission, but others have a higher rate.
D. Psychologists’ Role in the AIDS Epidemic
Psychologists have been involved in primary prevention by formulating strategies to
change risky behaviors and in secondary prevention by helping people who are HIV positive
to lead healthier lives.
1. Encouraging Protective Measures
Except for children, people have some control over their risks for HIV. Health care
2. Helping People with HIV Infection
A significant number of people who engage in high-risk behaviors have never been
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positive people adhere to medication, adopt a healthier lifestyle, and find meaning in the
experience of HIV.
VI. Facing Death
People prefer a long life, but they also express preferences to be in control over the end of
their lives, including when and how they will die; that is, most want to die a “good death.”
A. Adjusting to Terminal Illness
Most chronic illnesses allow people time to adjust to their conditions and even to die a
B. Grieving
People who are dying experience loss and bereavement, just as their friends and family do.
Thus, a process of adaptation occurs during terminal illness and during bereavement.
Although a stage theory of bereavement has been proposed, little evidence supports the notion
that grieving occurs in a fixed sequence. Bereavement inevitably includes negative emotions,
which people have difficulty accepting as normal and pushes grieving people to return to
“normal.” Grieving should not be rushed.
Exploring Health on the Web
Coping with chronic disease and the specific diseases reviewed in Chapter 11 are topics covered
on many websites on the Internet.
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The American Diabetes Association’s webpage provides a great deal of information that
is oriented to patients but also some for practitioners and researchers. The sources available on
this website include information about Type I and Type 2 diabetes, news releases, research
updates, and a search engine.
Avert is an international AIDS charity that has an extensive and informative webpage.
Two of the most interesting sections are Statistics, from which you can find information about
HIV worldwide, and Games and Quizzes, where a number of quizzes appear that allow an
assessment of knowledge and protective strategies.
A comprehensive website about AIDS/HIV that includes blogs, personal stories,
prevention information, treatment information, and a section entitled “HIV Tools You can Use,”
which includes the quiz “Are you at risk for HIV?”
Suggested Activities
Personal Health Profile I: Chronic Illness Affects the Entire Family
As a way to personalize the experience of chronic illness, have your students interview
someone who has a chronic illness or someone who has lived with a family member with a
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chronic illness. This interview should include questions concerning how the illness changed the
person and the family. The stories of family experiences with chronic illness tend to be sad, but
instruct your students to ask if there were any positive consequences associated with the
experience. Students should also ask questions about the emotional and financial changes that
occurred as result of the diagnosis and how the family adjusted to the person’s illness.
Personal Health Profile II: Assessing Chronic Health Problems
Students may have chronic health problems, and they are most likely to have asthma or
diabetes. Some young adults live with symptoms of asthma that affect their lives on a daily
Ethnicity and Diabetes
Diabetes affects some ethnic groups more than others, with Native Americans, African
Americans, and Hispanic Americans at greatly increased risk. Your students can examine these
AIDS around the World
Students’ knowledge about the HIV epidemic tends to be restricted to the United States,
which shows substantial differences in HIV infection rates and patterns of transmission from the
Protection against Alzheimer’s Disease
Research findings about the effects and progress of Alzheimer’s disease are plentiful, but
the study of prevention is less common. However, a research literature on protective factors is
developing, and your students might find it interesting to explore what they may do to decrease
their chances of this terrible disease. A good place to start (in addition to the text) is the AARP’s
website, which contains an article summarizing research on protective factors. It appears at:
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Panel Discussion
To better understand the similarities and differences among the various chronic diseases,
you may wish to arrange a panel discussion. Participants might include a survivor of cancer, a
Type 1 and a Type 2 diabetic, a person with AIDS or someone who has tested HIV positive, and a
caregiver for an Alzheimer’s patient. These people should be encouraged to give a personal
perspective of their daily problems in coping with chronic illness. Students should be alert for
similarities as well as differences required to adjust to these chronic illnesses.
Adjusting to Chronic Disease
Many students have chronic diseases, such as Crohn’s disease, multiple sclerosis, or
diabetes. Even if none of your students want to publically talk about these diseases, you could
still ask students to think about the following questions: What aspects of your chronic illness
impact you on a daily basis? What aspects of your daily routine do you need to modify and why?
End of Life Decisions
Although the textbook does not discuss end-of-life decisions, several psychologists have
examined the usefulness of advanced directives such as durable power of attorney and living
wills. Peter Ditto and his colleagues have identified several challenges to the usefulness of
advanced directives. Most Americans do not have an advanced directive that specifies what kind
of end-of-life care they prefer, especially minorities, the poor, the young, and the healthy. Many
people intend to draft an advance directive, but cite procrastination as a common excuse.
However, research shows that people’s preferences for various forms of end-of-life care are not
particularly stable, and are even more unstable following a health threat. Thus, it is difficult for
healthy people to accurately predict what kind of life-sustaining treatments they would prefer.
Family members tend to overestimate a patient’s preference for life-sustaining care, so may not
be the most accurate predictors of a person’s preferences for end-of-life care. However,
advanced directives can be helpful – especially when they can help strangers (such as hospital
and emergency physicians) make more informed decisions about the preferences of patients. The
video Facing Death (described later in this chapter) may be a useful supplement to this lecture
topic.
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References:
Coppola, K. M., Ditto, P. H., Danks, J. H., & Smucker, W. D. (2001). Accuracy of
primary care and hospital-based physicians’ predictions of elderly outpatients’ treatment
preferences with and without advance directives. Archives of Internal Medicine, 161, 431-440.
Ditto, P. H., Jacobson, J. A., Smucker, W. D., Danks, J. H., & Fagerlin, A. (2006).
Context changes choices: A prospective study of the effects of hospitalization on life-sustaining
treatment preferences. Medical Decision Making, 26, 313-322.
Ditto, P. H., Smucker, W. D., Danks, J. H., Jacobson, J. A., Houts, R. M., Fagerlin, A.,
Coppola, K. M., & Gready, R. M. (2003). Stability of older adults’ preferences for life-sustaining
medical treatment. Health Psychology, 22, 605-615.
Fagerlin, A., Ditto, P. H., Hawkins, N. A., Schneider, C. E., & Smucker, W. D. (2002).
The use of advance directives in end-of-life decision making: Problems and possibilities.
American Behavioral Scientist, 46, 268-283.
Cultural Differences in Mourning
The Impact of Stigma
Show students the items on the Berger HIV Stigma Scale and ask students to imagine the
consequences that might occur if someone scores high on each of the four factors of the scale:
personalized stigma, disclosure concerns, negative self-image, and concern with public attitudes
toward people with HIV. For example, if someone with HIV/AIDS has disclosure concerns, what
are the psychological consequences for that person? How might that affect their psychological
and physical health? How might it affect their social support network or structure? What could
health psychologists do to help individuals who feel stigmatized as a result of a chronic illness?
Video Recommendations
Chronic Illness
From Films for the Humanities & Sciences:
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The Chronically Ill: Pain, Profit, and Managed Care (2000) examines the cost of chronic illness
and the difficulty of finding good care for those with chronic illnesses. This program also
explores the burden of care that falls on families of people with chronic illness.
Alzheimer’s Disease
From Fanlight Productions:
One video about Alzheimer’s disease is a documentary film directed by Deborah Hoffman,
whose mother has Alzheimer’s disease. The film is Complaints of a Dutiful Daughter, and it was
nominated for an Academy Award. Hoffman tried to capture the humor of the situation as well
as the hardships of caring for her mother. Because of the film’s prominence, it is fairly widely
available for purchase or rental from many video stores and also from amazon.com (check the
Internet Movie Database [www.imdb.com] for other outlets).
Another personal film about Alzheimer’s disease is Something Should be Done about Grandma
Ruthie (1993), which presents the problems faced by families with an Alzheimer’s patient.
From Films for the Humanities & Sciences:
Diabetes
From Films for the Humanities & Sciences:
Managing Diabetes (2003) examines the dangers of diabetes but also ways to avoid and manage
this disease.
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Nutrition and Exercise (2003) focuses on the importance of these two factors in managing
diabetes and their role in other diseases.
Asthma
From Films for the Humanities & Sciences:
HIV/AIDS
AIDS: A Global Crisis (2002) presents the basics of HIV and gives a worldview of the epidemic.
AIDS: The Plague of the Century (1998) is a 2-part series. “AIDS in America: A History”
presents the spread of AIDS in the United States, and “The Global Impact of AIDS” features the
international scope of this plague.
HIV & Me: A Global Exploration with Stephen Fry (2007) is a two-part series with celebrated
actor and author Stephen Fry. This series includes a program focusing on the attitudes and
emotions related to HIV (“Fear, Ignorance, and Education”) and another highlighting the medical
fight against the disease (“Medical Advances and Setbacks”).
Videos from the Web:
Facing Death
From Films for the Humanities & Sciences:
Living with Dying (2000) is one of Bill Moyers’s programs that examine difficult topics. Moyers
questions people about death and dying and explores how the process of dying can have positive
aspects for the person who is dying and for friends and family.
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Creating a Good Death: Coping with Terminal Illness (2004) features the story of Laura
Schmidt, who helped cancer patients cope with impending death. After a diagnosis of pancreatic
cancer, she was faced with the same situation.
Videos from the Web:
Facing Death (2010). Part of the PBS Frontline series, this video documents some of the
complicated end-of–life decisions faced by doctors, patients and their families at New York’s
Mount Sinai Medical Center. The video asks viewers, real-life patients and their family a simple
but difficult question: How far would you go to sustain the life of someone you love, or your
Multiple Choice Questions
1. Chronic diseases are more common than acute diseases, but
a. fewer people die of chronic diseases.
b. people who have a chronic disease try to live as normal a life as possible.
c. chronic diseases are more easily cured than acute illnesses.
d. people with a chronic disease are more likely to seek medical treatment.
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2. The diagnosis of a chronic disease may be seen as a crisis or a psychosocial transition,
but both views acknowledge that such a diagnosis
a. requires adaptation.
b. affects families more than individuals.
c. is more difficult for women than for men.
d. is more difficult for people with diabetes than Alzheimer’s disease.
3. In contrast to people with acute illnesses, those with chronic disorders are more likely to
a. develop a hopeless attitude toward their condition.
b. accept their physician’s authority.
c. comply with medical advice.
d. be aware of their disease.
4. Russell has prostate cancer. What is MOST likely to be true of Russell?
a. His perception of himself will change.
b. He will experience few negative emotions.
c. His relationship with his family will be unaffected.
d. He will develop clinical depression.
5. Wilford has just received a diagnosis of Type 2 diabetes and has agreed to participate in a
cognitive behavioral program to help him cope with his diabetes.
a. This program will help Wilford develop emotion-focused coping strategies.
b. This program will allow Wilford to discontinue his medication.
c. This program will help Wilford and his family adapt to the changes he needs to
make in his life.
d. This type of program will not be as effective in helping Wilford as relaxation or
hypnosis.
6. The type of social support that tends to be most helpful to people with chronic illness
may be described as
a. selective.
b. coming from partners rather than family.
c. “circumplex.”
d. “invisible.”
7. Families with a chronically ill child should
a. find some positive aspect in their situation.
b. devote themselves full-time to their child.
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c. reinforce the child’s illness behaviors.
d. realize that the child’s chronic illness will soon be cured.
8. Chronic diseases affect children, with _____ of children having some chronic physical
health problem.
a. 1-5%
b. 10-15%
c. 25-30%
d. 50-60%
9. ______ appears to matter more than ___________ in determining the quality of life of
someone who is coping with a chronic illness.
a. Psychological functioning; physical functioning
b. Psychological functioning; environmental functioning
c. Physical functioning; psychological functioning
d. Physical functioning; emotional functioning
10. ______ functioning is the best predictor of quality of life in individuals who are coping
with a chronic illness.
a. Physical
b. Psychological
c. Physiological
d. Environmental
11. Which type of coping strategies tends to produce the best results when dealing with the
stresses of chronic illness?
a. emotional coping
b. avoidant coping
c. active coping
d. both a and c
12. Barbara’s daughter was recently diagnosed with diabetes. The best course of action her
family could take is to
a. treat her as someone who is unique because of her diabetes.
b. establish a routine that is close to normal.
c. tell the other daughters to never fight with their sister.
d. both a and b.
13. The largest risk factor for Alzheimer’s disease is _______.
a. genetics
b. age
c. body weight
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d. all of the above
14. Which of the following has been shown to increase a person’s susceptibility to
Alzheimer’s disease?
a. apolipoprotein ε
b. glucagon
c. insulin level
d. white blood cell count
15. All of the following decreases an individual’s risk for Alzheimer’s Disease except
a. physical activity.
b. cognitive activity.
c. depression.
d. low levels of alcohol consumption.
16. A common psychological problem among Alzheimer’s patients is depression, with as
many as ______ of patients reporting depressive symptoms.
a. 10%
b. 20%
c. 30%
d. 50%
17. What type of sensory stimulation therapy may be most beneficial for Alzheimer’s
patients?
a. Music
b. Aromatherapy
c. Exposure to sunlight
d. Muscle relaxation training
18. Early-onset Alzheimer’s disease seems to be due to
a. a genetic defect.
b. an accumulation of stressful life events.
c. an unusually high number of childhood illnesses.
d. an immune deficiency.
19. Henry, an 86-year-old retired farmer has a good memory and cognitive functioning. As
he continues to age,
a. his memory and cognitive functioning will markedly improve.
b. his memory and cognitive functioning will deteriorate rapidly.
c. his chances of developing Alzheimer’s disease will rise rapidly.