Coping with Prader-Willi syndrome.
Weight- and behavior-control issues are major concerns for parents of a child with Prader-Willi syndrome. However, limited information is available on how families implement the necessary dietary restrictions and the effects of the strategies. This study identified the advice a group of families received regarding weight management, the nutrition concerns they faced and how they coped with these concerns, and the effectiveness of their coping strategies. A 2-step survey methodology was used. Survey 1 identified the strategies parents used to cope with the feeding issues typically presented by children with Prader-Willi syndrome. Survey 2 evaluated the frequency with which these coping strategies were used and their effectiveness. Respondents also provided information on why strategies were not effective. Surveys were mailed to 496 parents/guardians of children (aged 25 years or younger) with Prader-Willi syndrome. A total of 293 (64%) responded. Advice given to families centered on general weight management and dietary guidance. Difficulties centered around coping with food-related behaviors. Coping strategies varied; what worked for 1 family did not necessarly work for another. Participants indicated a desire to share experiences and a need for specific strategies to cope with feeding-behavior difficulties. A few basic behavior-management strategies, including successful use of incentives, responding to misbehavior, rewarding compliance with an exercise program, and modifying the behavior management when indicated, are briefly reviewed.
Goldberg
Dena L
DL
Department of Family and Consumer Sciences, College of Agriculture, University of Wyoming, Laramie 82071-2354, USA.
Garrett
Christy L
CL
Van Riper
Cynthia
C
Warzak
William J
WJ
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001521:Behavior Therapy; D001835:Body Weight / Q000502:physiology; D002648:Child; D004032:Diet; D004034:Diet Surveys; D004038:Diet, Reducing; D015444:Exercise; D005260:Female; D006801:Humans; D008297:Male; D009765:Obesity / Q000178:diet therapy / Q000209:etiology / Q000517:prevention & control*; D010287:Parent-Child Relations; D010349:Patient Compliance; D011218:Prader-Willi Syndrome / Q000150:complications / Q000178:diet therapy* / Q000523:psychology; D016896:Treatment Outcome