Family Quality of Life and
Chronic Illness
J. Aubrey Burhart, Ed.M.
State University of New York at
Buffalo
Introduction
• Growing recognition of quality of life parallels
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increasing medical knowledge and technology
Improved longevity of nation as a whole leads to
increased likelihood that more people will
develop chronic illness (Lubkin & Larsen, 1998)
When quantity of life is extended, quality of life
needs to be considered.
Defining Quality of life
• No universally accepted definition
• Subjective and objective components are
typically included
Defining Quality of Life
• Ferrans (1985): “A person’s sense of well-
being that stems from satisfaction or
dissatisfaction with the areas of life that
are important to him/her.”
• Cella (1991): “Appraisal of and satisfaction
with their current level of functioning as
compared to what they perceive to be
possible or ideal.”
Recurrent Themes in definitions of
QoL
• Subjectivity: Numerous
• Multidimensionality:
Dimensions vary from
author to author;
common themes:
physical, psychological,
social, and spiritual wellbeing, economic impact
• Interpersonal well-being:
nonsupportive
relationships, sense of
not fulfilling family roles
subjective attributes
influence various domains
– Physical well-being:
feeling sick, slow or
poor functioning,
feeling dependent,
fatigued or in pain
• Psychological well-being:
unable to concentrate,
feeling insecure,
questions/fears regarding
disease
Physical Issues
• QoL is affected by the ability of chronically ill
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persons to continue in daily activities to avoid
decreased self-esteem and autonomy
Symptoms/Pain: Symptoms indicate whether
disease is present or advancing; Patients who
view pain as inevitable experience greater
pain/more distress compared to those who
perceived pain as a challenge (Barkwell, 1991)
Patients’ families often perceive the patient’s
pain to be greater than the patient’s themselves
report
Psychological Issues
• Psychological well-being influences adjustment
to chronic illness; General discomfort is thought
to be negatively associated with life satisfaction
and perceived coping ability
• Searching for meaning: Finding some purpose;
“Why me?”
– People ascribe various meanings:
• God has a plan
• Unlucky
• My family is now closer
• I deserved this
Social Issues
• Chronic illness affects quality of patients’ social
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relationships and roles; Patients’ social support
affects their QoL
Patient support groups reinforce self-worth and
promote adaptation
Affect and affirmation from spouses and family
correlated with less depression and improved
marriage and family functioning (Primomo et al., 1990)
Social Issues cont’d.
• Social well-being contributes to QoL in many
ways (Wortman, 1984):
– Influences how meaning is ascribed to illness
– Alters coping strategies used to manage
stress
– Influences motivation to employ adaptive
behaviors
– Promotes self-esteem
– Protects individuals from negative effects of
stress by altering their mood
Social Issues cont’d.
• For families, the goal is often “normalization”
• Strategies families often employ to be perceived
as “normal” include:
(Knafl & Deatrick, 1986)
– Engaging in activities that other families do
– Limiting contacts with people who are similarly
disabled or ill
– Avoiding embarrassing situations
– Controlling amount of information shared with others
Factors that affect family QoL
(Jassak & Knafl, 1990)
• Family structure/interaction patterns
• Availability of social networks
• Potential for adaptation
• Family philosophy such as beliefs,
attitudes, values, and perceived stressors
• Impact of illness
Spiritual Issues
• Spirituality differs from religiosity: “Spirituality”
•
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refers to innate, universal, human phenomenon;
“Religiosity” refers to a system of beliefs and
behaviors that reflect one’s spirituality
Spiritual well-being is believed to be associated
decreased frequently and amount of pain
Belief in a higher being used as a coping
mechanism by families
Economic Issues
• Chronic illness often precludes continued
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employment
Depending on amount of assistance person
needs, the primary family caregiver may have to
terminate employment
Extra costs incurred for special food, medical
supplies, therapy
If family cannot afford assistance, family
caregiver is likely to become overextended
Family Caregivers
(Lubkin & Larsen, 1998)
• Providing care to another can enhance
•
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caregiver’s sense of efficacy and contribute to a
positive self-image
Caring for patient at home preserves some
normalcy and can enhance QoL for patient and
family
When demands of providing care are perceived
as exceeding available resources, caregivers
experience stress, powerlessness, sometimes
depression
Family Caregivers
• Stress for families results from uncertainty
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regarding increased need for physical care over
an indefinite period
Families often report most extreme stress at
onset of symptoms, awaiting diagnosis; Stress
increases when client first moves in with
caregiver
Families face physical and intellectual changes in
patient, loss of financial resources, loss of
emotional support from individual
Primary caregiver may have decreased social
activities
Family Caregivers
• Burden of caregiving can increase over time
• Various illnesses are associated with exhaustion,
•
fatigue, nervousness, and depression in primary
caregiver, leading to increased risk for illness
(heart disease, hypertension)
Anxiety and guilt are prominent regarding
person’s future health and eventual death,
caregiver’s feelings of vulnerability and loss of
control, effects of illness on other family
members, distribution of finances, learning
about member’s health problem and complex
skills necessary for care, dealing with medical
care providers
Family Caregivers
• Family might resort to criticism to motivate client
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when angry and frustrated
Parents QoL can be affected by pervasive
feelings of guilt wondering if they caused the
illness in a child
Family may have to deal with patient’s anger
and unrealistic demands; Family often swallows
their natural response to anger which increases
anxiety
Families often undergo isolation and “loss of
self”
Chronic Disease – The nature of
the challenge
• About 10-15% of children under 16 years
of age are affected by chronic illness
• Many cannot be cured
• Modern medicine can control pain, reduce
intensity of symptoms, limit likelihood of
long term complications
• Every individual of child’s family will be
changed due to this unexpected diagnosis
Common Chronic Illnesses
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Cystic fibrosis
Spina bifida
Leukemia
Congenital heart
disease
Asthma
Sickle cell disease
Kidney Disease
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Diabetes
Muscular Dystrophy
Hemophilia
Neurological Disease
Concepts of Stress and Coping
• Coping: “Constantly changing cognitive and
behavioral efforts to manage specific external
and/or internal demands that are appraised as
taxing or exceeding the resources of the person”
(Eiser, 1993, p.94)
• Two ways of coping:
– Attempting to change or control some
aspect of the individual or environment
(problem focused)
– By managing or regulating the negative
emotions associated with the stressor
(emotion-focused)
Mothers and Fathers
• Mothers’ responses to chronic disease in their
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child have received an enormous amount of
attention compared to other family members
Mothers often take responsibility for sick child;
Fathers take care of other siblings and maintain
self-esteem through role as breadwinner
These differentiations create task specific
stressors for mothers and fathers
Mothers mental health adjustment
(Eiser, 1993)
• More likely to be anxious and depressed
• Report more mental and physical health
complaints
• Fear the child will hate them for the pain
they inflict via administering treatments
Factors that affect mothers’ mental
health
• Time since diagnosis
• Age of child
– preschool, adolescent age associated with more
distress
• Disease characteristics
– fewer conclusive studies
• Outside employment
– dependent on reason for employment, implicit
rewards in the work environment
Fathers’ responses to chronic
disease in their child
• Appear less likely to respond by showing
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increased signs of depression and anxiety
Understand less about the disease
Less involved in everyday practical care
However, less likely to be considered for
promotion
Fathers may interpret their role to be supporting
their wife
Contribute more with chores
Buffer the effects of child’s chronic disease on
mothers’ mental health
Impact of Chronic Disease on
Family relationships
(Garrison & McQuiston, 1989)
• Both siblings and mothers often exhibit
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increased levels of psychological distress and
maladaptation.
Marital disharmony, not divorce, is more
common
Specific family interaction patterns, such as
overprotection and high levels of conflict, as well
as parental psychological dysfunction have been
associated with child adjustment problems
Maintaining a Meaningful QoL:
Tips for Clinicians
• Provide families with disease-related information
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and expected changes
Seek out support groups for families with
children with chronic illness
Emphasize family strengths
Draw out family expectations of client and
others; Assist in the reintegration of their roles
Validate the unpredictability, frustration, etc.
Differentiate between wants and needs in order
to avoid disappointment and complaints
Maintaining a Meaningful QoL:
Tips for Clinicians
• Caregivers need a break! Encourage them
to compromise on certain aspects of
managing the house
• Families need help re-managing money
• Facilitate caregivers’ perceptions of respite
as a reasonable and appropriate action,
not personal failure
Thank You!
References
Barkwell, D. (1991). Ascribed meaning: A critical factor in coping and pain attenuation in
patients with cancer-related pain. Journal of Palliative Care, 7(3), 5-14.
Eiser, C. (1993). Growing up with a chronic disease: The impact on children and their
families. Philadelphia: Jessica Kingsley Publishers.
Garrison, W. T., & McQuiston, S. (1989). Chronic illness during childhood and
adolescence: Psychological aspects. London: Sage Publications.
Jassak, P.F., & Knafl, K. A. (1990). Quality of family life: Exploration of a concept.
Seminars in Oncology Nursing, 6, 298-302,
Knafl, K. A., & Deatrick, J. A. (1986). How families manage chronic conditions: An
analysis of the concept of normalization. Research in Nursing and Health, 9, 215-222.
Lubkin, I. M., & Larsen, P. D. (1998). Chronic illness: Impacts and interventions.
Massachusetts: Jones and Bartlett Publishers.
Primomo, J., Yates, B. C., & Woods, N. E. (1990). Social support for women during
chronic illness: The relationship among sources and types to adjustment. Research in
Nursing and Health, 13(3), 153-161.
Wortman, C. B., & Silver, R. C. (1992). Reconsidering assumptions about coping with
loss: An overview of current research. In L. Montada et al. (eds.), Life crises and
experiences of loss in adulthood. Hillsdale, NJ: Lawrence Erlbaum Associates.