Vivências de mães de crianças com Transtorno do Espectro Autista

Abstract

The general aim of this study is to describe the experiences of caregivers of children with Autism Spectrum Disorder (ASD). The research is qualitative, descriptive and exploratory and was approved by the institution's Research Ethics Committee. The study was carried out in a city in the interior of the state of Tocantins, in the northern region of Brazil, in a Municipal Center for Multidisciplinary Care (CMAM), a public clinic, which currently cares for 74 children with ASD. The inclusion criteria were direct caregivers, the main caregivers of children with ASD at the CMAM, regardless of family ties with the child and aged 18 or over. The exclusion criteria were: caregivers who were paid to look after the child with ASD; caregivers of children whose ASD diagnosis was associated with other health conditions. Data was collected in February and March 2024 through semi-structured interviews, which were recorded and transcribed. Content Analysis and Kurt Lewin's Field Theory were used, which indicates that the driving and restricting forces can act on three vectors: ME, OTHER and ENVIRONMENT. Twelve interviews were analyzed; 100% of the caregivers were women and mothers of children with ASD. This is why we decided to replace the term caregiver(s) with mother(s). From the analysis of the reports, it was possible to identify that numerous forces are present in the experiences of the mothers of children with ASD and that they operate in such a way as to help or hinder the experiences of these people. These forces led to the proposition of two categories of analysis: forces that drive (first category) and restrict (second category) the experiences of mothers of children with ASD. The driving and restraining forces identified in this research act on the vectors ME (mother), OTHER (child and family), ENVIRONMENT (health care network, school, other institutions and social actors) and can favor or hinder the well-being of the mother/family and the child with ASD. The driving forces present in the experiences of the mothers of children with ASD were related to being welcomed by the network, the proper functioning of the health network and school, as well as the family's learning from living with the child with ASD. The restrictive forces that acted on the mothers' experiences were related to the diagnostic itinerary and the feelings that arise when ASD is confirmed and when living with a child with this condition. In addition, the changes in routine imposed by ASD, the child's behavioral particularities, the reactions of the family and society to the child with ASD, as well as the scarcity of environmental, social and health network resources acted as forces that hindered maternal experiences, adversities that influence the life of the child with ASD and, sometimes, other family members. Identifying the field of forces made it possible to understand the factors and situations that influence motherhood and to identify the biopsychosocial demands of mothers of children with ASD.