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Quand diagnostiquer fait parler La « relation diagnostique » dans le syndrome de West

Abstract : Between 2016 and 2018, a multidisciplinary research – “Fam-West” – focused on an understanding of the construction of knowledge through the singularity of family experiences in West syndrome, a form of severe infantile epilepsy. Ethnographic and net ethnographic surveys included 30 families with children aged 11 months to 15 years. Through the study of the process of identifying disorders, it has made it possible to demonstrate the importance of the communicational dimension of diagnosis, beyond the question of the announcement itself. In particular, the results showed that the consequences of a lack of medical knowledge in terms of diagnosis do not only concern the disease, but also the patient and his entourage, whose first alerts are not sufficiently considered. The research emphazised that, faced to this deficit, the interviewed mothers draw up a relationship with identification, which is essentially anchored in the experience and relayed by the story in the context of a “diagnostic relationship” slowly built, which has an effect on the modalities of care.
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Sophie Arborio. Quand diagnostiquer fait parler La « relation diagnostique » dans le syndrome de West. Questions de communication, Presses Universitaires de Nancy - Editions Universitaires de Lorraine, 2019, Identité éditoriale, identités sportives, 35, pp.171-193. ⟨10.4000/questionsdecommunication.19206⟩. ⟨hal-02962568⟩



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