Patients' autonomy as a negotiated order: an ethnographic perspective on the clinical management of childhood obesity.

Abstract

The principle of patients' autonomy has assumed a central place in healthcare. Patients are encouraged to play an active role in the management of their health, especially when they are affected by chronic illnesses that require long-term follow-up. In this article, we analyse patients' and professionals' conceptions of patients' autonomy in the context of childhood obesity management. Based on the results of an ethnographic study that we conducted within a paediatric hospital in French-speaking Switzerland, we put into perspective the discourses that professionals, parents and children construct around their experiences of the therapy. Our study reveals that the conceptions that these three different actors have of patients' autonomy converge on several points, but they also diverge on many others. While the rise of autonomy in healthcare has mostly been analysed as a form of empowerment of patients, our results show that this principle also introduces new forms of social control over patients' lives, and it creates new tensions for patients who are unable to match with the normative expectations of professionals in terms of self-management and self-care.