Parenting stress in children with Cornelia de Lange syndrome and Down syndrome

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We assessed similarities and differences in self-reported stress (Parenting Stress Index: Short Form [PSI-SF]), patterns of challenging child behavior (Nisonger Child Behavior Rating Form [NCBRF]), and characteristics of autism (Gilliam Autism Rating Scale 2nd Edition [GARS-2]) across two distinct groups of children and young adults 5 to 24 years old: Cornelia de Lange Syndrome (CdLS, n = 25, Mage (SD) = 11.4 (4.7) years), and Down syndrome (DS, n = 23, Mage (SD) = 13.4 (6.0) years). Parents were recruited from the CdLS-USA Foundation and DS parent support groups across the United States. The study focused on identifying specific patterns of (a) parenting stress and (b) challenging behavior and autism-like characteristics in children with CdLS and DS. It was found that parents of CdLS children experienced far more stress than those of children with DS, and the difference could not be explained completely by demographic variables or children's developmental level. Rather it appears t
Original languageEnglish
Pages (from-to)537 - 553
JournalJournal of Developmental and Physical Disabilities
StatePublished - 2009


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