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L’aidant de « l’instant » : identité et prise en charge dans les épilepsies sévères

Abstract : From the pathological biographical event is born the reflective work of those who experience it as a helper, then the skill to transform this painful experience into learning. But, in a context where the acquisition of a reflective experience becomes essential for survival, in the particular case of severe epilepsies - rare diseases and disabilities - caregivers must also act with complete uncertainty. Faced with the unpredictable chronicity of crises, what then are the characteristics of the care provided by caregivers, and to what extent do their knowledge contribute to a global balance (personal and family) that goes well beyond care in itself? In the first place, knowledge about the rare disease is akin to action that is developed according to the circumstances. This action relates to the field of uses "in the process of being made" and the knowledge that results from it essentially depends on adaptation, at the interface of learning and constant questioning. This form of care that families call "taking charge of the moment" is gradually becoming more unique and it involves going through daily trials that will make the person who experiences them a unique actant. Second, adapting to the unforeseeable amounts to developing a hybrid form of knowledge, at the interface of experiential knowledge, social interactions and the personal journey of caregivers. This form of knowledge acts on the identity of those involved in care. It particularizes a given situation because it is collectively the result of interrelationships arising from the context of the affection and its management. In addition, the individual identity dimension it contains is based on tactics and life choices which, in large part, are linked to the appropriation of the disease as it evolves. It is about situational awareness, in situ.
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Submitted on : Friday, November 13, 2020 - 12:44:35 PM
Last modification on : Tuesday, May 3, 2022 - 2:06:07 PM
Long-term archiving on: : Sunday, February 14, 2021 - 6:49:24 PM


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Sophie Arborio. L’aidant de « l’instant » : identité et prise en charge dans les épilepsies sévères. Intervention, 2020, Regards sur la diversité des visages de la proche aidance en 2020, 151, pp.79-93. ⟨hal-03003693⟩



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