Article

PURPOSE: To describe family distress as reported by parents of children with
cerebral palsy (CP) and to identify factors associated with distress. METHOD: In
this descriptive, historical cohort study, parents of school-age children (9.2
+/- 2.1 years) with CP completed the Parenting Stress Index, the Impact on Family
Scale and family-related items on the Child Health Questionnaire. Predictor
variables considered were sociodemographic factors, motor, cognitive and
behavioral difficulties and functional limitations. These were assessed using the
Gross Motor Function Measure, Leiter IQ, Strengths and Difficulties Questionnaire
and Vineland Adaptive Behavior Scale. RESULTS:
Parents of 95 children were
recruited, of whom 45% were highly stressed and 11% defensive. Half indicated
that their child's health impacted on their time, emotional status and family
activities. Family distress measures were modestly associated with motor (r =
0.30-0.48) and cognitive abilities (r = 0.29-0.37) but more strongly correlated
with particular behavioral difficulties (r = -0.42 to 0.55). Activity limitations
across domains were highly associated with measures of distress. CONCLUSIONS:
Parents of school-aged children with CP are likely to experience high stress,
increased time constraints and financial and psychological burden. Findings
illustrate the need to monitor family functioning intermittently as the child
develops and direct appropriate resources to optimize child and family well-being.

Langue : ANGLAIS