Experiências parentais na criação de crianças com transtorno do espectro autista

• Autor(a) principal: Silva, Leonídia Aparecida Pereira da
• Data de Publicação: 2023
• Tipo de documento: Dissertação
• Idioma: por
• Título da fonte: Biblioteca Digital de Teses e Dissertações da UFPB
• Texto Completo: https://repositorio.ufpb.br/jspui/handle/123456789/30214
• topic: Autismo - Criança; Cuidados parentais; Transtorno do espectro autista; Relações familiares; Desenvolvimento humano; Child rearing; Autism Spectrum Disorder; Child; Family relations; Human development; CNPQ::CIENCIAS HUMANAS::PSICOLOGIA

The present dissertation aimed to analyze the report of everyday parenting experiences and their demands in the care of children with ASD at different ages and how they change over time. This is a qualitative exploratory research with a cross-sectional design. The theoretical framework that underpinned the research was Bronfenbrenner's Bioecological Model and relevant research on the proposed topic. Twelve mothers of children diagnosed with autism participated in this study. The selected age range included 3 groups with 4 mothers in each group: Group 01: mothers of children between 2 and 3 years old; Group 02: mothers of children between 4 and 6 years old; and Group 03: mothers of children between 7 and 11 years old. A family sociodemographic questionnaire and a semi-structured interview were used with the participants. The results were analyzed using Bardin's Content Analysis. The results allowed identifying that the diagnostic trajectory was marked by the characteristics of the investigation and disclosure of the diagnosis, including the impacts of disclosure and the lack of professional clarification. In Group 01, all children received the diagnosis at an earlier age (at 2 years old), unlike Groups 02 and 03, where the age of diagnosis ranged from 3 to 4 years. Half of the children had Level 1 support, two had Level 2 support, two had Level 3 support, and three children from Group 01 (2 to 3 years old) did not have a defined level. It was evident that the daily life of families focused mainly on the child with ASD, and the responsibility for care often fell on the mother. Mention of the father figure appeared when the mothers described the care provided by the father, and it was noted that they have less time available due to their work. Additionally, in all three groups, there was a predominance of references to the terms "difficult/difficulty" when describing what it means to them to be a mother of a child with ASD. Among the difficulties, in Group 01, the mention of the child's behavior was more frequent, followed by experiences of judgment and/or prejudice. In Group 02 (4 to 6 years old), the predominant reference was the difficulty in accessing treatments. In Group 03, the lack of acceptance by school professionals stood out. The mentions of personal and/or environmental resources used in the three groups demonstrate that family members are capable of reorganizing themselves in the face of difficulties. The importance of early intervention was emphasized, particularly in Group 01 (2 to 3 years old). Regarding the impacts of the COVID-19 pandemic, reverberations and challenges related to social isolation and changes in routine were identified, as well as repercussions on access to therapies. The expectations for the future of the child with ASD were also addressed, and references were made to the re-idealization of the child, hope in treatment, and hopes that the child would become more independent. The discussion of the results considered the maternal accounts, the characteristics of children with ASD, the literature on autism, the Bioecological Theory of Human Development (BTHD), and the PPCT Model (Person, Process, Context, and Time). The use of BTHD facilitated the understanding of parental experiences and provided access to important information that can assist parents, children with ASD, and other family members. However, it was found that there is still no robust literature that proposes to investigate the theme of autism from a bioecological point of view, thus suggesting that further studies be carried out with this focus. It has been shown that autism causes specific repercussions and demands for parental figures, influencing the interactions between parents and children throughout the child's development, and these reverberations impact parental beliefs and parental behavior.