Therapeutic education patient and epilepsy in children: recounting bodies and feelings

Introduction: Based on anthropological research carried out in two neuropediatric departments in Switzerland, this article aims to unveil the narrativity of children, which is often rendered invisible by the expert speech of health professionals or the parents' experiential discourse. Purpose of research: Raising this tension between others' sayings and self's sayings, we restore the feelings of a signified corporality experienced by children with regards to their illness, in particular epilepsy, which is a stigmatizing pathology imprinted with a heavy socio-historical background. Results: By relying on case studies produced in the context of a hospital ethnography, we will emphasize the importance of allowing, even within these TPE practices, the passage from what is said to the act of saying, or from the subject of the statement to the subject of the saying. Conclusions: Our conclusions show firstly that from a relational point of view, a narrative approach makes it possible to consolidate the triad of care by allowing a better identification of needs; secondly, from a therapeutic point of view, we will see that if the narration helps in the identity reorganization of these children confronted with fragmented pieces of life - acknowledging that the work of putting things into words participates in creating new meaning and links -, it also makes it conceivable to describe the possibilities of being that arise for the children themselves and for their immediate kin in terms of individual and collective experience of the disease.