Affiliation(s): Doctoral Network of Public Health
Research
The social making of the autonomous patient.
Develop and implement the education of the diabetic patient in France.
ABSTRACT
For more than ten years, therapeutic patient education programs have been rationally organizing the acquisition of skills and knowledge by people with a chronic disease, with autonomy being described as the goal of this process. Focusing on educational programs dedicated to people with diabetes, this thesis aims to understand what the medical institution does when it seeks to produce an "autonomous patient" and how it proceeds to do so. The research is based on different kind of materials: a corpus of written sources (diabetes textbooks, books and articles on patient education, dedicated journals), data from observations conducted during three therapeutic education programs for people with diabetes between December 2017 and May 2019 and lastly interviews (73 overall) with pioneers in patient education, professionals in charge of conducting the programs, and patients who participated in them. The thesis first uncovers the historical conditions that enabled the medical institution to invest in patient education. In spite of its recognition as "programs" and growing support from public authorities, all studied programs show signs of weakness that complicate their daily implementation. Nonetheless, they are contributing to a new way of governing patients’ conducts that is based on pedagogy rather than coercion. Whether or not based on hospitalization, educational programs adopt a school-based mode of socialization, breaking with the simple transmission of information within the doctor-patient relationship. By learning to consider long-term complications of diabetes as predictable and avoidable events, people with diabetes are encouraged to manage their disease by adjusting their daily behavior in a preventive perspective, which presupposes some learning beforehand. However, such a perspective is based on a socially situated relationship to health. The thesis thus sheds light on the influence of educational programs on social health inequalities, particularly significant in the case of diabetes. Working class patients have to make the greatest efforts to comply with medical recommendations made during programs, while they are also the least likely to benefit from the learning process, due to their lower exposure to the school form. Self-management of the disease then appears to be not only the product of institutional socialization, but also an ideal that is more easily achievable for patients who possess enough cultural, social and economic resources.