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


CONCLUSIONS
Parents and professionals prefer intervening above laissez-faire. Parents prefer active intervention stronger than professionals.


CONCLUSIONS
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.
van Hooren
Rob H
RH
Department of Health Care Studies, Section Healthcare Ethics and Philosophy, Maastricht University, P.O. Box 616, 6200 MD Maastricht, The Netherlands. R.vanhooren@ZW.unimaas.nl
Widdershoven
Guy A M
GA
Candel
Math J J M
MJ
van den Borne
Bart W
BW
Curfs
Leopold M G
LM
D000293:Adolescent; D000328:Adult; D032721:Adult Children / Q000523:psychology; D001291:Attitude of Health Personnel; D017028:Caregivers / Q000523:psychology*; D002648:Child; D003142:Communication; D003299:Cooperative Behavior; D003657:Decision Making; D005260:Female; D006801:Humans; D007389:Internal-External Control; D008297:Male; D016743:Mental Competency; D009426:Netherlands; D015404:Nursing Methodology Research; D010290:Parents / Q000523:psychology*; D026706:Paternalism; D010353:Patient Education as Topic; D010358:Patient Participation / Q000379:methods / Q000523:psychology*; D026684:Personal Autonomy; D011218:Prader-Willi Syndrome / Q000150:complications / Q000517:prevention & control* / Q000523:psychology; D036301:Qualitative Research; D012044:Regression Analysis