Prevalência e fatores associados ao Burnout parental em cuidadores de crianças com transtorno do espectro autista

Abstract

The diagnosis of a child with Autism Spectrum Disorder (ASD) requires caregivers to change their lifestyle habits, which can lead to overload, increased stress levels and the emergence of parental burnout. Therefore, the objective of this study was to: a) analyze the prevalence and factors associated with parental burnout among caregivers of children with Autism Spectrum Disorder (ASD) in a specialized reference service; b) understand the perceptions and experiences of caregivers of children diagnosed with ASD. This is an exploratory, cross sectional study with a qualitative and quantitative approach and mixed methods. The sample consisted of parents responsible for the care of children with ASD being monitored at the Instituto da Primeira Infância unit, Fortaleza, Ceará, Brazil. The following instruments were used to collect quantitative data: Social Support Scale (MOS-SSS); Lipp's Inventory of Symptoms of Stress in Adults (ISSL) or parental stress; Parental Burnout Assessment (PBA) Instrument. Qualitative data collection was performed through semi-structured interviews. Quantitative data were tabulated in Microsoft Excel and the final data set converted for use with Stata 7 statistical software for descriptive and inferential statistical analyses. Thematic content analysis was used to analyze qualitative data. The research project was submitted to the Research Ethics Committee of the Federal University of Ceará and approved under opinion No. 6,185,028. A total of 182 caregivers of children with ASD participated in the study; the largest proportion (87.4%) were female, with an estimated prevalence of parental burnout of 3.3%; 11% presented moderate risk. Parental burnout was more prevalent in female caregivers. Among the risk factors identified were the following: female gender; social class D; parental stress; low social support. The qualitative study resulted in the identification of eight thematic categories: identification of the first symptoms of autism by parents; difficulties in parents' search for a diagnosis; parents' perceptions and feelings regarding the diagnosis of autism; challenges and impacts on the family dynamics of the child with autism; challenging situations in living with the autistic child; concerns and fears of caregivers of the autistic child; present and future expectations of caregivers; perception about the concept of autism spectrum disorder. This study highlights the importance of multidimensional approaches that not only meet the specific needs of the child with ASD but also promote the integral well-being of caregivers. The results highlight that parental burnout is influenced by sociodemographic factors, parental stress and levels of social support. Interventions should focus on: increasing social support, especially affective and intersocial, monitoring and intervening early in symptoms of resistance and exhaustion, offering special attention to female caregivers and those in middle-income groups, who are more vulnerable.