title: Psychosocial problems, coping strategies, and the need for information of parents of children with Prader-Willi syndrome and Angelman syndrome.
abstract: The aim of the present study was to identify the psychosocial problems of parents of a child with Prader-Willi syndrome or a child with Angelman syndrome. In addition, the strategies these parents apply to cope with these problems as well as their need for information are described. To assess these topics, parents filled in a self-report questionnaire. Both parent groups were found to have a high need for information, high feelings of loss of control, relatively high depressive feelings, particularly in mothers in both syndrome groups. Differences due to the type of syndrome were found on the fear factor. Parents of a child with Angelman syndrome had greater feelings of fear for the negative consequences for themselves, whereas parents of Prader-Willi children were more concerned about the consequences for the child. In general, coping strategies were not found to be different between the parent groups of children who had either type of syndrome.
authors.affiliation: Department of Health Education, Maastricht University, The Netherlands.
authors.forename: H W
authors.initials: HW
authors.lastname: van den Borne
authors.forename: R H
authors.initials: RH
authors.lastname: van Hooren
authors.forename: M
authors.initials: M
authors.lastname: van Gestel
authors.forename: P
authors.initials: P
authors.lastname: Rienmeijer
authors.forename: J P
authors.initials: JP
authors.lastname: Fryns
authors.forename: L M
authors.initials: LM
authors.lastname: Curfs
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D017204:Angelman Syndrome / Q000523:psychology*; D001294:Attitude to Health; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D020380:Needs Assessment / Q000458:organization & administration*; D010290:Parents / Q000193:education* / Q000523:psychology*; D010353:Patient Education as Topic; D011218:Prader-Willi Syndrome / Q000523:psychology*; D012649:Self Concept; D011795:Surveys and Questionnaires