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Family Quality of Life and Chronic Illness

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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 ... – PowerPoint PPT presentation

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Title: 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)

9
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

11
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

19
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).
    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.
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