Psychosocial problems, coping strategies, and the need for information of parents of children with Prader-Willi syndrome and Angelman syndrome

The aim of the present study was to identify the psychosocial problems of p arents of a child with Prader-Willi syndrome or a child with Angelman syndr ome. In addition, the strategies these parents apply to cope with these pro blems as well as their need for information are described. To assess these topics, parents filled in a self-report questionnaire. Both parent groups w ere found to have a high need for information, high feelings of loss of con trol, 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 P rader-Willi children were more concerned about the consequences for the chi ld. In general, coping strategies were not found to be different between th e parent groups of children who had either type of syndrome. (C) 1999 Elsev ier Science Ireland Ltd. All rights reserved.