Family Quality of Life and Chronic Illness

1
Family Quality of Life and Chronic Illness

• J. Aubrey Burhart, Ed.M.
• State University of New York at Buffalo

2
Introduction

• Growing recognition of quality of life parallels
  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.

3
Defining Quality of life

• No universally accepted definition
• Subjective and objective components are typically
  included

4
Defining Quality of Life

• Ferrans (1985) A persons 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.

5
Recurrent Themes in definitions of QoL

• Subjectivity Numerous 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

• Multidimensionality Dimensions vary from author
  to author common themes physical,
  psychological, social, and spiritual well-being,
  economic impact
• Interpersonal well-being nonsupportive
  relationships, sense of not fulfilling family
  roles

6
Physical Issues

• QoL is affected by the ability of chronically ill
  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 patients
  pain to be greater than the patients themselves
  report

7
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

8
Social Issues

• Chronic illness affects quality of patients
  social 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)

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Social Issues contd.

• 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

10
Social Issues contd.

• 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

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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

12
Spiritual Issues

• Spirituality differs from religiosity
  Spirituality refers to innate, universal, human
  phenomenon Religiosity refers to a system of
  beliefs and behaviors that reflect ones
  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

13
Economic Issues

• Chronic illness often precludes continued
  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

14
Family Caregivers(Lubkin Larsen, 1998)

• Providing care to another can enhance caregivers
  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

15
Family Caregivers

• Stress for families results from uncertainty
  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

16
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
  persons future health and eventual death,
  caregivers feelings of vulnerability and loss of
  control, effects of illness on other family
  members, distribution of finances, learning about
  members health problem and complex skills
  necessary for care, dealing with medical care
  providers

17
Family Caregivers

• Family might resort to criticism to motivate
  client 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 patients anger and
  unrealistic demands Family often swallows their
  natural response to anger which increases anxiety
• Families often undergo isolation and loss of
  self

18
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 childs family will be
  changed due to this unexpected diagnosis

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Common Chronic Illnesses

• Cystic fibrosis
• Spina bifida
• Leukemia
• Congenital heart disease
• Asthma
• Sickle cell disease
• Kidney Disease

• Diabetes
• Muscular Dystrophy
• Hemophilia
• Neurological Disease

20
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)

21
Mothers and Fathers

• Mothers responses to chronic disease in their
  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

22
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

23
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

24
Fathers responses to chronic disease in their
child

• Appear less likely to respond by showing
  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 childs chronic disease on
  mothers mental health

25
Impact of Chronic Disease on Family relationships
(Garrison McQuiston, 1989)

• Both siblings and mothers often exhibit 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

26
Maintaining a Meaningful QoLTips for Clinicians

• Provide families with disease-related information
  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

27
Maintaining a Meaningful QoLTips 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

28
Thank You!
29
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).
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  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
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