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Master Thesis

Vécus de représentants d'associations sur le parcours d'enfants porteurs de troubles du neurodéveloppement au service de la création d'une plateforme diagnostique pour les enfants de 0 à 6 ans en Dordogne : enquête qualitative auprès des associations de parents

Abstract : Context: with a prevalence of 5% of the French population, neurodevelopmental disorders (ND) are a public health issue. The objective of the National Strategy for Autism in TND 2018-2022 is to facilitate the journey of children with a suspicion of ND by establishing a coordinated course of assessment and early intervention upstream of the diagnosis. The government wants guidance and coordination platforms to be put in place to tackle the problem of diagnostic wandering. The aim of the study is to explore the expectations of representatives of parents' associations in setting up these platforms and the role they wish to take within them. Method: a qualitative study with an anchored theorizing approach was conducted between February and August 2020 with 10 association representatives, through semi-structured interviews. The study benefits from data triangulation, researchers and ecological triangulation. Results: parents positively welcome the platform project. They denounce the obstacle course that families have to face, due to the lack of listening on the part of professionals and the insufficient number of adapted structures and trained personnel. Parents expect the platform to improve support for families. They are ready to intervene in a concrete way within the platform if the triangulation of care between the child, the parents and the health professionals is respected. They propose having a role of listening to parents and raising awareness among professionals and the general public. Conclusion: representatives of parents' associations have an essential place to take at the heart of guidance and coordination platforms. Their status as an expert parent must be welcomed by professionals as a force for supporting families during this difficult journey.
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Master Thesis
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https://dumas.ccsd.cnrs.fr/dumas-03621698
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Submitted on : Monday, March 28, 2022 - 2:37:55 PM
Last modification on : Tuesday, April 5, 2022 - 3:37:08 AM

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Virginie Ladois. Vécus de représentants d'associations sur le parcours d'enfants porteurs de troubles du neurodéveloppement au service de la création d'une plateforme diagnostique pour les enfants de 0 à 6 ans en Dordogne : enquête qualitative auprès des associations de parents. Médecine humaine et pathologie. 2022. ⟨dumas-03621698⟩

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