Download - Catalyst

The Effects of a Child’s Illness on
a Family
Austin Hayes
Pediatric Surgery Rotation
Overall Goal
• Address sick children’s
impact on their family
– Parents
– Siblings
– Household Economics
• Relationships, scholastic
achievement, physical
and psychiatric health,
overall stress
• 50 trauma pts, TS<13, mean age 7.6 yrs, average 1 month in
hospital
• 1 year follow-up via telephone survey
• Results:
– 75% of pts had continued disability
– 46% siblings had emotional reactions, school problems and aggressive
personality changes
– 37% reported negative changes in their marriage
– 58% of reported that one parent stopped working to care for child
– 25% depleted entire savings or gone into debt
– Only 20% report no change in family dynamic or finances
• J Pediatr Surg. 1989 Jan;24(1):103-5; discussion 105-6.
Effect on Siblings
• Children’s Hospital Cincinnati
• Measured depressive symptoms, self-concept,
and behavior in siblings of children with severe
pediatric TBI
• Used parent, teacher and self assessment tools
• 12 siblings, follow-up at 3-18 months
• J Head Trauma Rehabil 2001;16(6):587–594
Results
• No difference in
– depressive symptoms
– self-concept
– behavior between the siblings and their
classmates
• Limitations
– Small sample size (12 siblings)
– Limited length of follow-up (3-18 months)
– Only sibling closest in age to pt. was studied
• Goal to assess association between chronic
childhood health problems and the mental
health of siblings
• 1869 families, 3294 children (4-16 yrs), 91%
participation
• J Dev Behav Pediatr. 1988 Jun;9(3):117-21.
Methods
• Parents/teachers/children completed written
surveys
• Used SDI to approximate diagnosis of:
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conduct disorder
ADHD
emotional disorder (over-anxious, depression, and OCD)
Somatization
• Separate scales used for measuring “social
adjustment”
• Control group: siblings of physically healthy children
Results
Results
• Siblings were generally at little increase risk of
psychiatric disorders or social maladjustment
• Some trend towards increased risk for
emotional disorders (depression, anxiety, or
OCD)
• Increased difficulty getting along with peers
• No increased risk of conduct disorder, ADHD,
or somatization
Limitations
• A possible bias may occur if mothers of
chronically ill children took less account of
mental health of social adjustment problems
of physically healthy children than did
mothers without chronically ill children
Effect on Caregivers
• Hypothesis: child’s illness and associated stress may have
implications for subsequent health symptoms in family
members
• Single caregiver interviewed three days after PICU
admission and 9 wks post admission
• Caregiver’s health was assessed with the Medical
Outcomes Study Short-Form General Health Survey (MOS).
• Admission and 9wk scores compared
• Issues Ment Health Nurs. 1995 Nov-Dec;16(6):533-45
Results
• No observed decrease
in:
– Health perception
– Pain
– physical/social/role
functioning
• Significant decreases in
mental health scores
observed (22.6->20.2)
– After stratification:
• If greater potential for chronicity, parents had a
significantly greater decline in mental health and were
in the range of “poor mental health” at the 9-week
posttest
• Statistical significance was lost in caregivers whose
illness was thought to have little chance of chronicity
Limitations
•
•
•
•
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Small study size (20)
Lack of pre-illness assessment
Limited follow-up (9 wks)
Subjective scoring
Potential for childhood illness chronicity not
used for stratification in other outcomes of
health and well-being
• Parents given questionnaires regarding their
perception of relationship changes after
cancer diagnosis
• 35 couples with children aged 2-16
• 1-7 years since diagnosis (leukemia, brain
tumors, bone and soft tissue sarcomas, only 4
couples>4yrs from diagnosis)
• Health Soc Work. 2003 Nov;28(4):255-63.
Questionnaire
• Measured “change in marital quality”
• ENRICH 10-item scale assessing perceived quality of his/her marriage (10
dimensions)
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–
–
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–
–
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Spouse’s personal traits
Communication
Conflict resolution
Financial Management
Leisure activities
Sexuality
Parenting
Relationship with extended family
Division of household labor
Interpersonal trust
• Each dimension given +1 (improvement), 0 (no change), -1 (deteriorated)
• Largest negative effect was on sexual relationship (only one
couple agreed that their sexual relationship improved)
• Husbands noted > positive change in relationship than wives
• Positive change in relationships diminished at
four years
• Significant deterioration noted if child ill >5 years
Study Limitations
• Not prospective
• Couples who divorced after diagnosis were
excluded
• Selection bias (couples volunteered)
• Small size (35 couples)
• No long term follow-up
• No control group
• No stratification for child’s health/prognosis
• Prospective Longitudinal study comparing
stress and coping in mothers of 8-year-old
VLBW (<1500g) and term children
• 110 high-risk VLBW, 80 low-risk VLBW, and
112 term
• J Pediatr. 2007 Nov;151(5):463-9.
Results
• No significant difference in parental divorce
rate in the 3 groups
– 14 (16%) families of high-risk VLBW
– 4 (7%) families of low-risk VLBW children
– 11(12%) families of term children
• No difference is parenting/marital satisfaction,
family cohesion, or psychological distress
Overall Conclusions
• Children with chronic illness do place additional stress on their
families
• Siblings' mental health and school performance is generally
unchanged. One study demonstrates increased risk for emotional
disorders and difficulty with interaction with peers
• Acutely, potential chronicity of illness affects caregiver mental
health
• After cancer diagnosis, families generally note marital improvement
in areas of communication and bonding. Sexual relationship show
most significant deterioration.
• After eight years, VLBW, and term families had no difference in
divorce rates, parenting/marital satisfaction, family cohesion, or
psychological distress.
The End