Le rôle de la «â€ˆnarration située ¼ en éducation thérapeutique des patients (ETP) : de l'information à la relation.

INTRODUCTION: This dossier brings together different proposals presented during the closing conference of the West Syndrome research program: construction of knowledge and singularity of family experiences (Fam-West). It was devoted to the therapeutic education of the patient (TPE) and its possible deployment in the context of the management of rare diseases. AIM OF THE STUDY: Today, the communication approach of the common formal TPE could be qualified as informational. In this approach, knowledge is transmitted in a linear fashion from the caregiver to the patient and the development of the device is based on the message, the communication supports and their adaptation to the target. But the TPE approach could also be thought of as one of the possible places for developing experiential knowledge, through which the knowledge and skills that patients can develop through illness are recognized. RESULTS: This dossier therefore intends to document the forms of incursion of the narrative within a specific care relationship that is the TPE, allowing at the same time to shed light on the way in which the health actors seize the narrative question in different contexts and also to bring new avenues of questioning relating to the relationship of TPE between caregivers, patients and those around them. CONCLUSIONS: It is from the angle of disciplinary dialogue that the place of storytelling in TPE has been questioned. This file thus crosses approaches in fundamental or interventional human and social sciences, engineering approaches or those of expert practitioners and patients who put theories and tools to work to bring about a "relational TPE" tomorrow by documenting its limits as well as its potential.

L'incertain au cœur de l'éducation thérapeutique du patient : une ressource heuristique en faveur des dires de soi.

OBJECTIVE: This article stems from the synthesis of four research studies in anthropology of health, around perinatality and severe epilepsies, with a view to propose a reflection at the interface of the notions of uncertainty, "self-statements" and TPE. The role of storytelling is questioned in the context of pathologies with high uncertainties, as much on a diagnostic as on a therapeutic and social level. A better understanding of storytelling is indeed a central identity and epistemological issue in the development of an adapted TPE system. METHOD: The four research studies presented in the article are based on a qualitative ethnographic method, with participant observations and semi-structured interviews, but the article is presented in the form of a multidisciplinary literature review established on the basis of the results of these works. RESULTS: The results of this synthesis demonstrate that thanks to their enunciative structure, the "sayings of oneself" contribute towards the identity reconstruction of the subject in the context of TPE, allowing them to better adapt to the multiple uncertainties that characterize some care. CONCLUSION: The narration represents the ferment of an identity which, once upset by rare disease and handicap, must be able to be rebuilt in particular within the framework of a TPE program. In doing so, beyond the transmission of medical information, TPE must be able to support the "self-explanations" of patients and/or caregivers in order to allow them to fully commit to taking in charge of their affections.

Networks as culture: understanding and accounting for risks within networks of medico-social actors.

The anthropological part of the present research project addresses the issue of risk and uncertainties relating to perinatality and disability, and draws from the discourses of professionals in a perinatal network in the French Lorraine region. From an anthropological point of view, it is necessary to determine how and to what extent the views of professionals determine the network's management policies. The place conferred to 'the user' in these representations is one of several important issues to be analysed in order to gain better understanding of the management of relationships that result from it. What is the position of professionals who 'negotiate' and 'organise' the cost of the risk of disability when grasped in connection with their images of the 'users' (children and parents)? This qualitative study consisted of 40 semi-structured interviews conducted with 20 medical, social, and community professionals, all involved directly or indirectly with the network. The results demonstrate the importance of a network assessment as a 'culture' from the social and cultural relations of network professionals. These relations form the cement of a structure made of interpersonal ties and rooted in particular histories around a 'user' that are conveyed through individual narratives.

[Social and cultural representations in epilepsy awareness]. / Représentations sociales et culturelles dans l'appréhension des épilepsies.

Representations relating to epilepsy have evolved over the centuries, but the manifestations of epilepsy awaken archaic images linked to death, violence and disgust. Indeed, the generalised epileptic seizure symbolises a rupture with the surrounding environment, "informs it", through the loss of social codes which it causes. The social and cultural context, as well as medical knowledge, influences the representations of the disease. As a result, popular knowledge is founded on the social and cultural representations of a given era, in a given society.