Abstract

ROSSETTI, Luiza Pessi; DIASWEIGELT, Leni; CHIELLE, Micila Pires  and  SOMAVILLA, Vera Elenei da Costa. A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care. Rev. Educ. Espec. [online]. 2023, vol.36, e71018.  Epub Sep 25, 2024. ISSN 1984-686X.  https://doi.org/10.5902/1984686x71018.

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder, considered a public health problem due to increasing diagnosis worldwide. The present study sought to analyze, through the narratives produced to parents of children with ASD, the feelings and repercussions of the diagnosis on the family, as well as the behaviors considered appropriate in relation to care provided by health professionals. This is a descriptive exploratory research, of a qualitative nature, developed in a municipality in the interior of Rio Grande do Sul, where interviews were applied with 13 parents of children with ASD. Data were collected between March and May 2022, in houses or work theirs. For data analysis, the Content Analysis method was used, emerging four thematic categories: reactions and feelings in the face of a diagnosis, ASD and family and social repercussions, parent’s narratives regarding the care provided by health professionals, behaviors professionals considered ideal. The results indicated that the diagnosis impacts the lives of family members in different ways, arousing different feelings, requiring changes in routine and social life, as the family ends up focusing its activities according to the demands presented by the child. Among the difficulties faced by the participants, the lack of reception and support in the health services, difficulties in accessing therapies, in addition to the shortage of specialized professionals, stand out. It is concluded that effective care for the person with ASD and their family is still fragile and professionals must be trained for the demands of this increasing condition.

Keywords : Autism Spectrum Disorder; Health; Family.

        · abstract in Portuguese | Spanish     · text in Portuguese     · Portuguese ( pdf )