Rm. Hodapp et al., FAMILIES OF CHILDREN WITH PRADER-WILLI-SYNDROME - STRESS-SUPPORT AND RELATIONS TO CHILD CHARACTERISTICS, Journal of autism and developmental disorders, 27(1), 1997, pp. 11-24
This study examined stress-support in 42 families of 3 to 18-year-old
children with Prader-Willi syndrome. Parents were asked about themselv
es and their families, their child with Prader-Willi syndrome, family
supports, and family stress. Compared to reported stress levels in fam
ilies of children with mixed etiologies of retardation, parents of chi
ldren with Prader-Willi syndrome showed higher levels of parent and fa
mily problems, and comparable levels of pessimism. Parents of children
with Prader-Willi syndrome listed other family members and friends as
their main supporters; often such supporters lived outside of the res
pondent's town or city. Although the child's age, Ie, and degree of ob
esity were not related to familial stress families experienced greater
stress when the child showed more behavior problems overall, more ext
ernalizing and internalizing problems, and more problems on five of th
e nine narrow-band domains of Achenbach's Child Behavior Checklist.