TY - JOUR
T1 - Between control and freedom in the care for persons with Prader-Willi syndrome
T2 - An analysis of preferred interventions by caregivers
AU - van Hooren, Rob H.
AU - Widdershoven, Guy A.M.
AU - Candel, Math J.J.M.
AU - van den Borne, Bart W.
AU - Curfs, Leopold M.G.
PY - 2006/10/1
Y1 - 2006/10/1
N2 - 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.
AB - 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.
KW - (Shared) Decision-making
KW - Autonomy
KW - Deliberation
KW - Interpretation
KW - Intervention strategies
KW - Paternalism
KW - Prader-Willi syndrome
UR - http://www.scopus.com/inward/record.url?scp=33748465752&partnerID=8YFLogxK
U2 - https://doi.org/10.1016/j.pec.2005.11.004
DO - https://doi.org/10.1016/j.pec.2005.11.004
M3 - Article
C2 - 16426799
SN - 0738-3991
VL - 63
SP - 223
EP - 231
JO - Patient Education and Counseling
JF - Patient Education and Counseling
IS - 1-2
ER -