O cotidiano do ser-familiar de criança com transtorno do espectro autista: subsídios para a enfermagem

Abstract

Autistic Spectrum Disorder (ASD) is characterized by a deviation from the development of sociability from early onset and chronic evolution, by the persistent impairment in reciprocal social communication and social interaction and restricted and repetitive patterns of behavior. Objective: to understand the daily life of family members of children with Autism Spectrum Disorder. Method: a qualitative study with a phenomenological approach based on Michel Maffesol's methodological framework. The research had as population six relatives of children with ASD from a municipality in Zona da Mata in the state of Minas Gerais. Data collection took place in the participants' homes in the period of August / November 2019 through semi-structured interviews. The comprehensive analysis came in the light of Maffesoli's comprehensive sociology. It was intended to narrow the knowledge gap regarding the subject under study, as well as to encourage discussions and reflections on the assistance provided by nurses aiming at strengthening public policies aimed at this audience. Results: from the analysis, three categories were constructed: “From mourning to struggle”: (a) the daily life of a family member of a child with ASD in the therapeutic itinerary; (b) between the real and the ideal: limits and powers of daily care for children with ASD; (c) diving into the daily life of a family member of a child with autism: the tragic experience. Final considerations: it was found that, in the health field, the consolidation of rights is faced with the precariousness of the provision of specialized services and the lack of knowledge of professionals. Therefore, there is an urgent need to strengthen public policies that ensure improvement in the quality of health services in the public network. It is expected to contribute to the direction of nurses' actions and support to family members based on their needs.