Coping with Prader-Willi syndrome

Dena L. Goldberg, Christy L. Garrett, Cynthia Van Riper, William J. Warzak

Research output: Contribution to journalArticle

13 Scopus citations

Abstract

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 necessarily 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.

Original languageEnglish (US)
Pages (from-to)537-542
Number of pages6
JournalJournal of the American Dietetic Association
Volume102
Issue number4
DOIs
StatePublished - Jan 1 2002

ASJC Scopus subject areas

  • Food Science
  • Nutrition and Dietetics

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