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Master Thesis

Programme d'éducation thérapeutique pour les aidants de personnes avec un trouble du spectre de l'autisme : niveau d'information et besoins exprimés

Abstract : Objectives: autism spectrum disorder has a major impact on caregivers, who show high levels of stress due to the difficulties they face in daily life. Although education programs and training can help them to meet their needs, few studies have examined their needs and expectations concerning such programs. We aimed to describe caregivers’ perceptions concerning their level of knowledge about ASD and their needs to better adapt education and training programs, particularly according to the age of the person with ASD and the gender of the caregiver. Methods: this was a descriptive cross-sectional study conducted through a declarative and self-administered survey in France. The participants were caregivers of people with ASD, recruited through CRAs, GNCRAs, and caregiver and family associations. They answered a questionnaire specifically designed for this study. We then performed a descriptive analysis. Results: in total, 1 013 individuals answered the questionnaire in 2020. If most caregivers felt they had sufficient knowledge about ASD, they still expressed a high level of needs regarding acquiring knowledge about the functioning of the person with ASD and identifying available resources. Caregivers of children were mostly interested in acquiring skills, identifying available resources, and managing sibling relationships than caregivers of adolescents or adults, but needs concerning the acquisition of knowledge about ASD and social/relational support were expressed independently of the age of the person with ASD. Mothers were more interested in receiving psychological support and fathers in acquiring skills to communicate with their son or daughter with ASD. Conclusions: this study highlights the high level of needs of caregivers and their expectations of improving their knowledge and skills to help the person with ASD. Education and training programs should be promoted and adapted to this population.
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Master Thesis
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Contributor : Faculté de Médecine Um Connect in order to contact the contributor
Submitted on : Thursday, February 10, 2022 - 11:20:14 AM
Last modification on : Friday, March 18, 2022 - 3:14:38 AM
Long-term archiving on: : Wednesday, May 11, 2022 - 6:26:11 PM


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  • HAL Id : dumas-03564176, version 1



Claire Colombet. Programme d'éducation thérapeutique pour les aidants de personnes avec un trouble du spectre de l'autisme : niveau d'information et besoins exprimés. Human health and pathology. 2021. ⟨dumas-03564176⟩



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