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Research on Caregivers of Children with Chronic Illness and Disability

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General view driving most caregiving research is that caregiving involves ... Mourning (grieving) Stages of grief ... 'chronic mourning' ... – PowerPoint PPT presentation

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Title: Research on Caregivers of Children with Chronic Illness and Disability


1
Research on Caregivers of Children with Chronic
Illness and Disability
2
Review
  • General view driving most caregiving research is
    that caregiving involves responding to the needs
    of others, but at a cost to the person providing
    care.
  • Researchers have focused mostly on those costs
    using such concepts as burden and stress and
    focusing on negative health outcomes.
  • The greatest amount of attention has been to
    caregiving for adults with chronic illnesses and
    Alzheimers disease.

3
More recently
  • There has been more attention to positive
    aspects of caregiving (PAC) and to the possible
    benefits of providing care.
  • A stress process model has been the major
    theoretical framework employed.
  • The main concepts in this model include
    stressors, resources, coping, appraisal and
    perceived stress.

4
What about caring for children with disabilities/
illness?
5
In most cultures, children are perceived as
valuable
  • They are a key product flowing from the family
    unit
  • Parents take pride in their children in their
    appearance, skills, achievements, etc.
  • Normal or exceptional child development and high
    achievement are valued
  • Children may later become key caregivers of
    their parents
  • Childrens labor may be essential to the
    household, family business or farm

6
So what happens when a child is disabled or ill?
  • 10-12 of children in US have a serious chronic
    health problem or disability (more than 6
    million)
  • Not surprising that earliest research focused on
    birth of an affected child as a family crisis
  • Two dimensions were explored
  • Behavioral immediate care for the child, medical
    care and treatment, financial concerns, impact on
    job performance, etc.
  • Affective feelings of grief, anger, guilt,
    helplessness and isolation, impact on marriage
    and siblings

7
1950s 60s
  • Birth of a defective child followed by
    numbness, disappointment
  • Heavily influenced by psycho-analytic theory key
    assumptions
  • Mother develops mental image of the expected
    child during pregnancy
  • Grieving viewed as reaction to the loss of the
    expected and wished for healthy infant

8
Primary concepts in early research
  • Crisis
  • Stress,
  • Chronic sorrow,
  • Mourning (grieving)

9
Stages of grief
  • Many early studies (descriptive) looked at
    different stages of grief
  • Protest, despair, withdrawal (Kennedy, 1970)
  • Impact, denial, grief, focusing outward, closure
    (Fortier, 1984)
  • Comparison to children who died

10
chronic mourning
  • Olshansky (1962) proposed was a normal reaction
    to the birth of a handicapped child
  • Dealing with unrelenting demands and unabated
    dependency
  • Long-term counseling recommended

11
Holt (1958)
  • Descriptive study of 201 families of all ages
    with disabled child
  • Paints grim picture of parents of developmentally
    disabled children
  • 40 couples never went out together
  • Many mothers never left their child
  • Strain related to poor health, exhaustion, family
    quarrelling
  • (Was criticized for poor methodology)

12
Cummings, Bayley and Rie (1966)
  • Compared mothers of healthy, chronically ill and
    mentally retarded children
  • Mothers of affected children had lower self
    esteem and higher levels of depression
  • However, other studies at the same time found no
    differences
  • So, we have a mixed picture

13
Levinson (1976)
  • Studied 319 parents of severely retarded child
  • Subjective impact greater when child was first
    born, when child was male.
  • Parents experiencing greater stress more likely
    to consider institutionalization
  • No association between marital satisfaction and
    amount of stress

14
Friedrich, (1979)
  • 98 mothers of children with range of handicapping
    conditions
  • Found mothers feeling secure in the marital
    relationship most important factor in feeling
    capable of coping

15
Brantley and Clifford (1980)
  • Compared mothers of children with cleft palate
    and mothers of physically normal children
    (control group)
  • Mothers of deformed children reported less
    positive feelings toward their children, greater
    anxiety about childs future.
  • Upper income mothers were more negative than
    lower income mothers

16
Cleveland (1979)
  • Focused on how parents organized and adapt their
    roles to care for the child?
  • Found families organized around the physical
    requirements of the child and parental affect
    (depression, hopelessness) was influenced by the
    mood and behavior of the child.

17
Other issues studied
  • Spousal relationship
  • Siblings
  • Overall family functioning

18
Critique of research
  • Assumed negative reactions and did not look for
    successful adaptation
  • Mostly clinic-based samples (selection bias)
  • Did not include child in study
  • Poor methodology few control groups, selection
    bias, not standardized instruments
  • Cross-sectional and not longitudinal (e.g. looked
    at the family at one point in time only)

19
Exceptions
  • Stachowiak (1971), Ritchie (1981)
  • Used family process theory
  • Videotaping families interacting in problem
    solving and conflict resolution tasks
  • Found patters of interaction DIFFERENT but not
    DYSFUNCTIONAL when compared to control group

20
Venters (1981)
  • Families of children with cystic fibrosis
  • Found three clusters (high, med. Low adaptation)
  • Two key factors in positive adaptation
  • 1) Effectively sharing burden of childs illness
    among family members
  • 2) families ability to make philosophical sense
    of what happened to them
  • Meaning based coping

21
Minde et. al. 1972
  • Longitudinal study over 3 years (5-9 year olds)
  • Included interviews with teachers, child, other
    children and parents perception of child
  • Found parents saw their child as either deviant
    or normal and difficulty synthesizing these two
    images
  • Affected child experienced depressive reaction to
    realization that they were permanently
    different
  • But, gradually were able to incorporate the
    handicap into their lives

22
Newer paradigms
  • Caregiving families are stressed but different,
    not pathological
  • Successful adaptation and coping is possible
  • Focus on systems surrounding child and family
    (social environment)

23
Social Ecology
  • Child viewed as center of nested spheres of
    influence all important to adaptation
  • Focus on reciprocal impact of individuals and
    systems
  • E.g. childs temperament and nature of illness
    influences parents as much as parents influence
    child
  • Focus on adaptation, not pathology

24
Ecological Model of Caregivers
Exosystem
MacroSystem
25
Microsystem
  • The roles, interpersonal relations experienced by
    the developing person including the immediate
    family.
  • Parent-child, sibling, parental relations
  • Issues Impact of disability severity or type on
    child adjustment, family functioning, marriage,
    siblings impact of family coping on child
    development and vise versa.

26
Mesosystems
  • A set of Interrelated microsystems
  • Schools, health care professionals (doctors
    ,nurses, hospitals), churches, friends, extended
    family.
  • Issues how does the performance of these systems
    help or hinder the childs development and family
    caregiving?

27
Exosystem
  • Does not directly affect child, but has profound
    indirect impact.
  • Parental social networks (friends, extended
    family and colleagues),
  • Employers.
  • Issues extent to which family and friends are
    supportive, extent of flexible work schedules,
    insurance coverage, etc.

28
Macosystem
  • Culture, sub-culture
  • Values of society, attitudes toward people with
    disabilities
  • Social policies and services
  • Issues Impact of culture on adaptation, impact
    of service availability, impact of social
    attitudes and laws, etc.

29
Selected findings
  • No direct link between severity of illness /
    disability and family functioning
  • This suggests coping and appraisal are critical
    factors
  • Dealing with services, educators, health care,
    insurance, schools, etc. is a major source of
    stress for families

30
Findings
  • Stressors change as child ages caring for
    disabled infant not very different than normal
    infant, but pre-school and school age challenges
    are different
  • As child ages, family must deal with more and
    more outside systems this is stressful for some
    families
  • Child behavior problems significant predictor of
    parental, family stress

31
Findings
  • Marriage relationship may become more conflicted
    OR couple may become closer and more supportive
    But we really dont know why
  • Siblings, likewise, may either thrive or develop
    problems. Difference seems to be in how well the
    parents involve the child in the disability too
    much or too little is bad

32
Ecological Model of Caregivers
Exosystem
MacroSystem
33
findings
  • Families of disabled child have smaller, more
    closely knit social networks
  • Supportive social networks associated with lower
    levels of family stress, lower depression in
    parents
  • Availability of supportive services associated
    with lower stress and more effective coping
  • Conflict with service providers (hospital, rehab
    center, doctors, teachers) is associated with
    higher levels of family stress

34
findings
  • Stress and anxiety of parents cluster around key
    developmental milestones (entry and graduation
    from school, reaching adulthood, becoming
    independent, aging)

35
findings
  • Socio-economic status (income) is an important
    determinant of families perceived stress (higher
    income less stress) (Why?)
  • Families of children with disabilities/ chronic
    illness have lower incomes regardless of
    education and much less likely to have two
    parents working (Why?)
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