Providing good care in the context of restrictive measures: the case of prevention of obesity in youngsters with Prader–Willi syndrome

R.H. van Hooren, H.W. van den Borne, L.M.G. Curfs and G.A.M. Widdershoven

in Empirical Ethics in Psychiatry

Published on behalf of Oxford University Press

Published in print February 2008 | ISBN: 9780199297368
Published online February 2013 | e-ISBN: 9780191754586 | DOI:

Series: International Perspectives in Philosophy & Psychiatry

Providing good care in the context of restrictive measures: the case of prevention of obesity in youngsters with Prader–Willi syndrome

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This research, with both a qualitative and a quantitative approach, provides an example of how empirical ethics may contribute to the study of the moral conflict between respecting autonomy on the one hand and beneficence (providing high-quality care) on the other. In our studies we focused on the experiences of caregivers within the specific practice of dealing with the prevention of obesity in people with Prader–Willi syndrome. What values are relevant to caregivers, and how do caregivers manage the problems of overeating in daily practice? The study of these experiences shows that caregivers do not, on the whole, tackle this moral issue as a problem of balancing two opposing principles, but seek imaginative ways of enhancing autonomy within a safe environment. From the experience of practitioners we may learn that there are more ways of dealing with moral issues in the prevention of obesity than those that are dominant in moral theory. This may lead both to conceptual and normative conclusions. Conceptually, we may conclude that a definition of autonomy, based on the notion of positive freedom can be relevant in the area of the prevention of obesity in the care of people with a Prader–Willi syndrome. The notion of autonomy as positive freedom can be elaborated using the work of Emanuel and Emanuel. Yet, this also implies the need to reflect on the rationalist way in which Emanuel and Emanuel describe autonomy as moral development, which seems to restrict this notion to competent adults. This conceptual conclusion also has a normative side. The notion of positive freedom can serve as a goal in this specific practice of care. Our study not only shows the moral relevance of this goal, but also makes clear those moral actions, attitudes, and considerations that are necessary to achieve this goal, such as giving support and creating safety. Thus, our study confirms the conclusion by Van der Scheer et al. (2004), that empirical ethics can develop normative theories by means of an empirical inquiry into the practice relevant to specific practical problems.

Chapter.  6564 words.  Illustrated.

Subjects: Psychiatry

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