Family adaptation to cerebral palsy in adolescents: A European multicenter study.
Audrey Guyard, Susan I Michelsen, Catherine Arnaud and 1 others
PMID 28087202WHAT IT FOUND
31.8% of parents of adolescents with cerebral palsy had clinically significant stress.
Behavioural problems and how severe the child's motor problems were were linked to more distress; family functioning, positive attitude and caregiving breaks were linked to less.
Key findings
0131.8% of parents scored above the clinical cutoff of 90 on the Parenting Stress Index total score.
02Behavioural disorders had the worst aggravating effect on parental distress among disability stressors.
03Family functioning was the strongest protective factor, and being able to leave the child for a few hours was linked to less distress.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The study was cross-sectional, so it cannot show that behavioural problems, motor severity, family functioning, positive attitude or caregiving breaks caused changes in parental distress. 220 families had complete data for the main analysis; 286 families were enrolled, and the response rate was 53.4%. The authors note the sample size was limited relative to the number of parameters estimated. The model grouped cognitive impairment, communication disorders and seizures into one associated-impairments factor, so it cannot separate their individual effects. It focused only on adolescents, so it does not show how families adapt at other ages. Some questionnaire items were blank because the interview was long and some parents could not decide answers. Family functioning was entered as dysfunction, and the authors caution that this is not simply the opposite of positive functioning. No interventional study has tested therapy to develop family functioning, so the protective association is not evidence that an intervention works.
The easy way to misread this
Do not conclude that giving families respite, improving family functioning or promoting positive attitude will reduce parental distress. This was a cross-sectional survey, not a treatment study, so it only reports associations.