Research on Caregivers of Children with Chronic Illness and Disability

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Research on Caregivers of Children with Chronic
Illness and Disability
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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.

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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.

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What about caring for children with disabilities/
illness?
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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

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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

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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

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Primary concepts in early research

• Crisis
• Stress,
• Chronic sorrow,
• Mourning (grieving)

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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

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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

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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)

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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

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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

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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

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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

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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.

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Other issues studied

• Spousal relationship
• Siblings
• Overall family functioning

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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)

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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

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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

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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

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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)

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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

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Ecological Model of Caregivers
Exosystem
MacroSystem
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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.

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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?

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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.

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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.

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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

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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

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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

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Ecological Model of Caregivers
Exosystem
MacroSystem
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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

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findings

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

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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?)