caa a22 4500 605544867 CHVBK 20210128100933.0 cr unu---uuuuu 210128e20151001xx s 000 0 eng 10.1007/s10897-015-9820-1 doi (NATIONALLICENCE)springer-10.1007/s10897-015-9820-1 The Impact on the Family of Four Neurogenetic Syndromes: A Comparative Study of Parental Views [Elektronische Daten] [Colin Reilly, Lelia Murtagh, Joyce Senior] 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. National Society of Genetic Counselors, Inc., 2015 Challenges nationallicence Positive nationallicence Neurogenetic nationallicence Impact nationallicence Reilly Colin School of Education, University College Dublin, Belfield, Dublin 4, Ireland aut Murtagh Lelia School of Education, University College Dublin, Belfield, Dublin 4, Ireland aut Senior Joyce School of Education, University College Dublin, Belfield, Dublin 4, Ireland aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/5(2015-10-01), 851-861 1059-7700 24:5<851 2015 24 10897 https://doi.org/10.1007/s10897-015-9820-1 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-015-9820-1 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Reilly Colin School of Education, University College Dublin, Belfield, Dublin 4, Ireland aut NATIONALLICENCE 700 1- Murtagh Lelia School of Education, University College Dublin, Belfield, Dublin 4, Ireland aut NATIONALLICENCE 700 1- Senior Joyce School of Education, University College Dublin, Belfield, Dublin 4, Ireland aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/5(2015-10-01), 851-861 1059-7700 24:5<851 2015 24 10897