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Master Thesis

Obstacles rencontrés dans la prise en charge somatique des personnes adultes avec Trouble du Spectre de l'Autisme (TSA) : point de vue des aidants principaux

Abstract : Introduction: people with ASD present features having an impact on their somatic management. They have the same care needs as the general population, but to this, specific care are needed. Access to health care is not yet fully effective. The main goal of this study was to determine which elements complicate the management or are lacking in the somatic management of people with ASD. The secondary goals were to understand the role of primary caregivers in somatic management, and to note the point of view of the primary caregivers about solutions possible in the study area. Method: we carried out a qualitative study based on semi-structured interviews among primary caregivers of people with ASD in Landes and Pyrénées-Atlantiques, from April to August 2019. Results: 13 interviews were carried out. In addition to the intrinsic features of ASD and the strong association with comorbidities, our study highlighted the relationship between primary caregivers and health professionals. The main obstacles encountered in somatic management were relationships with health professionals, but also the lack of training, the lack of time, the lack of adaptation and anticipation. The lack of coordination of care was also a major problem. Caregivers played a crucial role in care access and were mainly responsible for planning and adapting management and educating professionals. These expert parents also suffered from a lack of consideration of their opinion. Finally, the health care system was deficient, unsuitable and outdated. This resulted in a low supply of health care, unsuitables equipment and environmental devices, and overwhelmed care settings. Conclusion: our study shows that despite the guidelines, the somatic management of people with ASD remains a true obstacle course for caregivers and that many facilities are needed.
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Master Thesis
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https://dumas.ccsd.cnrs.fr/dumas-02531319
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Submitted on : Friday, April 3, 2020 - 3:56:17 PM
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Manon Villette. Obstacles rencontrés dans la prise en charge somatique des personnes adultes avec Trouble du Spectre de l'Autisme (TSA) : point de vue des aidants principaux. Médecine humaine et pathologie. 2020. ⟨dumas-02531319⟩

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