Patient education in the context of Parkinson disease cared for with deep brain stimulation

Abstract

Background From the 1960 on, Western societies have developed patient education. In France, patient education is part of the public health Law since 2009. Research on patient education has developed in the field of social sciences and humanities in order to understand the social dynamics on which it is based, its intended implications and actual results. As patient education may contribute to an evolution of health care services, this research gives rise to a knowledge that is important to ground public health policies. Funded by IReSP, the present study is innovative as it explores the contemporary development of patient education in the field of Parkinson disease; analyses the teaching models that grounds patient education in this field; examines the implications of technological care (here, deep drain stimulation) in terms of transmitted knowledge and acquired skills. Methods Review of literature. Conceptual analysis of the teaching models (and tools) used in training sessions. Ethnographic work (observations of training sessions; qualitative interviews with health professional and patients) - multi-centric perspective (Paris, Nantes, Toulouse). Results Historical reconstitution of the development of patient education in the context of Parkinson disease worldwide, with a focus on the French context, and its actors. Identification and examination of a variety of goals assigned to patient education. Identification and examination of the teaching models (and tools) used in training sessions. Conclusions Patient education in the field of Parkinson disease shows a great variety of educational practices and of transmitted knowledge. The analysis of its teaching models (and tools) and of the place devoted to technological care in the training sessions show the necessity to better clarify the goals assigned to patient education (patient autonomy, patient observance, emergence of the expert patient). Key messages A clarification of the goals and teaching models of patient education is needed. A specific attention must be paid to patient education in the context of technological care.