title: The Impact on the Family of Four Neurogenetic Syndromes: A Comparative Study of Parental Views.
abstract: Research on behavioral phenotypes in neurogenetic syndromes has primarily focused on aspects of the affected child's behavior. However, the impact of having a child with a neurogenetic syndrome on aspects of family functioning can be significant and differ across syndromes. Parents (N = 381) of school-aged children with one of four neurogenetic syndromes: fragile X Syndrome (FXS), Prader Willi Syndrome (PWS), Williams Syndrome (WS) and 22q11.2 (22qDEL) were asked about challenges, restrictions, future concerns and positive aspects arising from having an affected child. Factors associated with these aspects were analysed via logistic regression. Restrictions were most often reported by parents of children with FXS. The factors significantly (p < .01) associated with the parent reported restrictions were the presence of a behavioral/psychiatric condition and a lower level of receptive communication. The challenges endorsed most often were the child's learning and social skills difficulties. Significant differences (p < .01) between the syndromes were noted for many of the challenges. Ninety-six percent of parents endorsed at least one positive aspect but most aspects endorsed did not differ between the genetic syndromes. Having a behavioral/psychiatric condition was the only factor significantly associated (p < .01) with endorsing a lower number of positive aspects and a higher number of challenges. There are some commonalities but also significant differences across syndromes regarding views on how a child's syndrome affects family functioning. These differences may be important with regard to how to counsel and support affected families. The presence of behavioral/psychiatric conditions is an important predictor of negative family outcome across the syndromes.
authors.affiliation: School of Education, University College Dublin, Belfield, Dublin 4, Ireland. creilly@youngepilepsy.org.uk.
authors.forename: Colin
authors.initials: C
authors.lastname: Reilly
authors.affiliation: School of Education, University College Dublin, Belfield, Dublin 4, Ireland.
authors.forename: Lelia
authors.initials: L
authors.lastname: Murtagh
authors.affiliation: School of Education, University College Dublin, Belfield, Dublin 4, Ireland.
authors.forename: Joyce
authors.initials: J
authors.lastname: Senior
mesh_terms: D000223:Adaptation, Psychological; D000293:Adolescent; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002652:Child Behavior / Q000523:psychology; D004062:DiGeorge Syndrome / Q000451:nursing / Q000523:psychology*; D005260:Female; D005600:Fragile X Syndrome / Q000451:nursing / Q000523:psychology*; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D011218:Prader-Willi Syndrome / Q000451:nursing / Q000523:psychology*; D018980:Williams Syndrome / Q000451:nursing / Q000523:psychology*
keywords: Challenges; Impact; Neurogenetic; Positive