Between control and freedom in the care for persons with Prader-Willi syndrome: An analysis of preferred interventions by caregivers

Rob H. van Hooren*, Guy A.M. Widdershoven, Math J.J.M. Candel, Bart W. van den Borne, Leopold M.G. Curfs

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review


Objective: The present study examined caregivers' preferences for intervention strategies in dealing with the dilemma of respecting autonomy of intellectually disabled persons versus providing high-quality care. Methods: Twenty-four parents and 14 professional caregivers of persons with Prader-Willi syndrome were asked to rate four different kinds of intervention strategies according to their preferred way of dealing with 8 presented cases. Results: In general, caregivers preferred to intervene more actively in eating problems compared to behavioural problems, more in acute than in chronic situations, and more in situations at home than in community-based settings. Significant differences were found between parents and professionals. Conclusion: Parents and professionals prefer intervening above laissez faire. Parents prefer active intervention stronger than professionals. Practice implications: Awareness of various intervention strategies can help caregivers to develop a practice that does justice to the need for intervention on the one hand, and the possibility of using a variety of intervention strategies on the other hand. Communication about intervention strategies might foster understanding between professional caregivers and parents and improve mutual cooperation.

Original languageEnglish
Pages (from-to)223-231
Number of pages9
JournalPatient Education and Counseling
Issue number1-2
Publication statusPublished - 1 Oct 2006

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