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

Abstract

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.