PowerPoint for Chronic Illness - Meagher Lab

Health Psychology
Chapter Eleven:
Management of Chronic Illness

Quality of Life:
What Is Quality of Life
The degree to which a person is able to maximize his
or her
Physical,
Psychological,
Vocational, and
Social functioning
It also addresses disease or treatment related
symptomatology
It is an important indicator of recovery from, or
adjustment to, chronic illness.

Chronic Illness
At least 50% of US population is being treated for a
chronic medical condition.
Conditions that cannot be cured, only managed.
Current focus is on improving Quality of Life (QoL)
Biomedical Model
Focus is on length of survival and signs and symptoms of
illness, rather than the behavioral and psychosocial outcomes of
disease.
Success measured by changes in biological processes, e.g..,
blood chemistry, physiological state, etc.
90% of health care research focuses on mortality or
physiological indicators of morbidity to determine treatment
outcome.

Kaplan’s Model
Argues that the most important indicators of health and
wellness are behavioral. Thus, assessment and outcome
measures should be anchored in their relationship to behavior.
Behavior: subjective conscious states and overt activities
that can be observed by self, another person, or
measurement device
Physiological states are only important because they are
either predictors or mediators of behavioral outcomes…
quality of life.
Death is a behavioral outcome …the absence of activity
Disease and disability have 2 important consequences:
1) decrease life expectancy
2) behavioral dysfunction and other symptoms
e.g., absenteeism, bed disability days, impaired work or
relationships

Quality of Life:
Why Study Quality of Life
Research helps pinpoint which problems are likely
to emerge for particular patients
How does chronic illness alter work, social &personal adjustment
Documentation helps improve interventions for
those who are chronically ill
Are psychosocial interventions needed and do they improve QoL
Impact of unpleasant treatments can be seen and
reasons for poor adherence identified
Do medical treatments alter the quality of life ...is the treatment
worse than the disease
Therapies can be compared
Decision-makers have information about long-term
survival and quality of life

How to assess Quality of Life
a) Physician ratings
b) Lost years of life
c) Quality-adjusted life years (QALYs)
d)
takes into account the quality of life consequences of illnesses
(HIV, cancer). If a disease reduces the quality of life by 1/2 over
a year, it will take away 0.5 QALYs over the course of the year.
If it affects 2 people, it takes away 1.0 years.
A medical treatment that improves quality of life by 0.2 for each
of 5 pts will result in 1 QALY.
Same system to quantity side effects of treatment, so that you
can determine the net effect of treatment by subtracting out side
effects from benefits. Cost of treatment can also be estimated
as well as costs to produce QALYs.

Quality of Well-Being Scale
One of several measures for assessing quality-adjusted life years.
Provides a measure of well-life expectancy, the current life
expectancy adjusted for diminished quality of life associated with
dysfunctional states.
This measure can be used to quantify the impact of a treatment
program in terms of a common metric, the quality-adjusted life years
that it produces or saves.
This scale will allow a single number to express the impact of the
chronic condition on the number of well-years of life lost, i.e., HIV.
QWB assessment is significantly correlated with biological,
neuropsychological, neurological, psychiatric, and mortality outcomes
for HIV patients. Also, chronic obstructive pulmonary disease,
congestive heart failure, arthritis, cystic fibrosis, asthma, depression,
diabetes, and other conditions.
Can be used to evaluate the relative efficacy of different treatments
on QoL, allowing us to determine the best treatments.

Depression and Quality of Life
Research using the SF-36 which assesses physical
functioning, social functioning, role limitations due to physical
problems, mental health, vitality, pain, and general health
perceptions……a measure of quality of life.
Impairments differ across chronic conditions, e.g., arthritis
pts report role limitations due to physical problems, and
headache patients report more pain and emotional and mental
health problems.
BUT the clinically depressed patients are the most impaired
group in terms of quality of life.
International studies conducted by the WHO also show that
depression is the most debilitating condition and associated
with other chronic diseases (e.g., heart disease).
In light of these data, the WHO and NIH are directing more
research dollars to develop cost effective treatments for
depression.

Emotional Responses of Chronic
Illness: Denial
Defense mechanism by which people avoid
the implications of an illness
Denial is a common early reaction to the
diagnosis of a chronic illness
This illness is not severe
This illness will go away soon
There will be few long term implications

Emotional Responses of Chronic
Illness: Denial
Immediately after the diagnosis, denial can serve a
protective function
Keeps patient from dealing with full range of
problems posed by illness
Denial can reduce days in intensive care
Denial can reduce side effects of treatment
During the rehabilitative phase, denial may have
adverse effects
High deniers at this time show less adherence
to treatment regimen

Emotional Responses of Chronic
Illness: Anxiety
Anxiety is common after diagnosis:
It increases when people
Are waiting for test results
Are anticipating adverse side effects
Are awaiting invasive medical
procedures
Anxiety is high when
Substantial lifestyle changes are
expected
People feel dependent on health care
professionals

Emotional Responses of Chronic
Illness: Anxiety
Assessment and treatment of anxiety may be needed
Anxiety may increase over time
Concern about possible complications
Concern about implications for the future
Concern about the impact of the disease on
work and leisure-time activities
May impact ability to function, resulting in poor
coping with treatment (e.g., nonadherent to chemo),
exacerbation of symptoms (e.g., diabetes)
Anxious MI patients less likely to return to work

Emotional Responses of Chronic
Illness: Depression
When the acute phase of chronic illness has
ended
Then full implications begin to sink in
Depression is common
Often is debilitating
Assessing depression is problematic
Depressive symptoms, such as fatigue or weight loss, are
also symptoms of disease or side effects of treatments
Some illnesses or treatments produce depressive
symptoms, MS, HTN meds
1/3 of depressed pts go undetected
Risk increases with severe conditions, significant pain &
disability
Bidirectional relationship:

Emotional Responses of Chronic
Illness: Interpersonal Distress
Pts withdraw from others and problems
maintaining/developing relationships
Family and friends have problems adjusting,
send mixed messages.
Family may need support services if pt is
highly dependent
Positive reactions too- optimism and
meaning may develop after you have come
close to death.

Personal Issues in Chronic
Disease: Overview
Self-Concept
A stable set of beliefs about one’s
personal qualities and attributes
Self-Esteem
A global evaluation of one’s qualities
and attributes
Whether one feels good or bad about
one’s qualities and attributes

Personal Issues in Chronic
Disease: The Physical Self
Body Image
Perception and evaluation of one’s physical
functioning and appearance
Body image plummets during illness
Body image can be restored, but it takes time
Exceptions: Facial disfigurement and burns
Patients whose faces are disfigured may never
accept their altered appearance

Personal Issues in Chronic
Disease: The Achieving Self
Achievement is important to
self-esteem and self-concept
Satisfaction from job/career
Pleasure from hobbies/leisure
activities
Does the chronic illness threaten these
If it does, self-concept may be
damaged
If not, they may take on new meanings

Personal Issues in Chronic
Disease: The Social Self
Rebuilding social self
An important part of readjustment
Interactions with family/friends provide
Critical source of self-esteem
Information
Help and emotional support
Fears about withdrawal of support are
common worries of the chronically ill

Personal Issues in Chronic
Disease: The Private Self
Major threats to self, because illnesses create
Need to be dependent on others
Loss of independence
Strain of imposing on others
Adjustment to chronic illness impeded
Patient’s secret dream seems shattered
Alternate paths to fulfillment need
discussing

Coping with Chronic Illness:
Coping Strategies
Coping strategies
Similar to those employed to deal with
other stressful events
One notable difference: Chronically ill
report fewer active coping methods
(planning, problem solving) and instead
use more passive coping methods
(positive focus and escape/avoidant)

Coping with Chronic Illness:
Coping Strategies
Avoidant coping is associated with increased
psychological distress
Related to poor glycemic control among
insulin-dependent diabetics
Active coping efforts are more consistently
associated with good adjustment
Multiple Strategies may be helpful when a strategy is
matched to a particular problem

Coping with Chronic Illness:
Patients’ Beliefs
Patients must integrate their illnesses into
their lives
Develop a realistic sense of the illness
Understand restrictions imposed by it
Follow the regimen required
Patients need to adopt an appropriate model
for their disorder
Acute models won’t be effective

Coping with Chronic Illness:
Patients’ Beliefs
People develop theories about where their illness
came from
Stress
Physical injury
Bacteria
God’s will
Self-Blame Another person Environment
Fate
Research on the consequences of self-blame is
inconclusive

Coping with Chronic Illness:
Patients’ Beliefs
Are patients who believe they can control their
illness better off
Yes, it is usually adaptive to have a belief in
control and a sense of self-efficacy
Patients with chronic obstructive pulmonary disease
with high self-efficacy expectations lived longer
than those with lower expectations
However, when real control is low, efforts to induce it
or exert it may backfire

Rehabilitation and Chronic
Illness: Overview
Chronic illness raises specific problemsolving
tasks
Depends critically on patient
co-management of the disorder
Tasks include
Physical problems
Vocational problems
Problems with social relationships
Personal issues concerned with the
illness

Rehabilitation and Chronic Illness:
Who Uses Long-Term Care - Figure
11.1
Some problems are so severe
that they can only be handled
through institutionalization

Rehabilitation and Chronic
Illness: Physical Problems
Physical Rehabilitation
A program of activities geared toward helping
patients
Use their bodies as much as possible
Sense changes in the environment so as to make
appropriate physical accommodations
Learn new physical management skills
Learn a necessary treatment regimen
Learn how to control the expenditure of energy

Rehabilitation and Chronic
Illness: Physical Problems
Physical problems include those that
Arise as a result of the chronic illness
Emerge as a consequence of treatment
Comprehensive programs may need to
include
Pain-management programs
Training in adaptive devices
Behavioral interventions
Adherence is essential to consider

Rehabilitation and Chronic
Illness: Vocational Issues
Patients may need to change/restrict work activities
Many individuals face discrimination
Heart, Cancer, HIV patients
Organizations may believe that the chronicallyill
are not worth the time/resource investment
due to a poor prognosis
Loss of insurance coverage through work adds a
huge financial burden

Rehabilitation and Chronic Illness:
Social Interaction Problems
Disabled individuals elicit ambivalence from
acquaintances
Verbal signs may be of warmth, affection
Gestures, body posture may convey
rejection
Distant relationships are more adversely
affected than are intimate relations with close
friends and family

Rehabilitation and Chronic Illness:
Social Interaction Problems
Intimate others may be
Distressed by the loved one’s condition
Worn down by pain/dependency of loved one
Ineffective at giving support because their own
support needs are not met
The family is a social system
Illness in one member affects the lives of other
members

Rehabilitation and Chronic Illness:
Caregiving Role
Substantial strain on primary caregiver
Typical caregiver: Women in her 60s
caring for an elderly spouse
Also common: Care for parents and
disabled children
Role commonly falls to women
Caregivers are at risk for
Distress, depression, declining health

Rehabilitation and Chronic Illness:
Positive Changes
Chronically ill people may
Perceive a narrow escape from death
Reorder their priorities
Find meaning in smaller activities of life
Two studies compared quality of life in cancer
patients with normal samples of people free
of disease
Cancer samples had greater quality of life
than non-ill samples

Rehabilitation and Chronic Illness:
When the Patient is a Child
Children may be confused because they
don’t understand the diagnosis and
treatment
Children cannot follow the treatment regimen
without help from family
Children must be exposed to isolating and
terrifying procedures
Some children adjust successfully, but
others show a variety of problems

Psychological Interventions and
Chronic Illness: Overview and
Pharmacology
Adverse effects of chronic disease
Anxiety, depression, disturbances in
interpersonal relationships
Evaluation for depression and anxiety
Should be standard in chronic care
Pharmacological treatment
May be appropriate when major
depression is associated with chronic
illness

Psychological Interventions and
Chronic Illness: Individual Therapy
Differs from therapy with patients who have primarily
psychological complaints
Therapy is more likely to be episodic rather than
continuous
Chronic illness raises crises and issues
intermittently
Collaboration with family and physician is critical
Psychological defenses should be respected rather
than challenged
Therapist should have a comprehensive
understanding of the illness and treatment

Psychological Interventions and
Chronic Illness: Brief Interventions
Brief Psychotherapeutic interventions
Telling what to expect during treatment
Forestalls anxiety
Group coping skills training successful
Enhances perceptions of control
Therapy conducted over the telephone
Benefits patients by enhancing
personal control
Music, art, and dance therapies
Improve patients’ responses to
chronic illness

Psychological Interventions and
Chronic Illness: Education, Internet,
Writing
Patient Education Programs are designed
To inform patients about the disorder and its
treatment
To train them in methods for coping with the
disorder and its corresponding limitations
The Internet
Provides information in a cost-effective manner
Patients/Families access appropriate Web sites
Expressive Writing
Writing about cancer benefits the terminally ill

Psychological Interventions and Chronic
Illness: Relaxation and Stress
Management
Relaxation training
Widely used with the chronically ill
Decreases anxiety and nausea from
chemotherapy
Decreases pain for cancer patients
Used with stress management/blood pressure
monitoring to treat essential hypertension
MBSR: Mindfulness-based stress reduction
Focus on reality of present moment
Long-term efficacy unknown, reduces stress

Psychological Interventions and
Chronic Illness: Exercise
Exercise interventions
Most commonly undertaken with MI
patients
May or may not have a direct impact on
mood
Physical fitness is reliably improved
Exercise improves quality of life

Psychological Interventions and
Chronic Illness: Social Support/
Family Support
Social support resources
Influence health outcomes favorably
Can be threatened by chronic illness
Interventions can teach patients to
Recognize potential sources of support
Draw on these resources effectively
Family support
Enhances patient's physical/emotional
functioning
Promotes adherence to treatment

Psychological Interventions and
Chronic Illness: Support Groups
Group of individuals who meet regularly
Share some common problem or concern
Support groups are believed to help people cope
because
People learn techniques that others have used
successfully to combat problems
They provide opportunities to share concerns
and exchange information with similar others
Support groups may promote better health and longterm
survival

Opportunity points:
1) Placebo effects contribute to medication
and surgical improvements in functioning.
2) Evidence suggests that minorities are
inappropriately under medicated for pain.
3) According to Kaplan, quality of life is less
important to consider than length of life.