Percepção de sobrecarga e suporte social em mães e pais de crianças com autismo

Abstract

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by persistent deficits in social communication, social interaction, and the presentation of restricted and repetitive patterns of behaviors, interests, and activities. The high demands related to caring for an autistic child can impact different areas of family life, such as health, work, and leisure. Women are the main caregivers of their children with autism, and the need to provide continuous caregiver burden, with specific attention, can lead the caregiver to experience situations of care. In this sense, the literature points out that social support is a fundamental aspect in coping with caregiver burden, mental health, and the quality of life of caregivers. The present study aimed to: (1) investigate the levels of caregiver burden and the perception of social support of mothers and fathers of children with ASD, verifying the relationship between these variables and (2) compare whether there are gender differences in terms of these variables. A total of 103 caregivers participated in the study, 74 mothers and 29 fathers of autistic children over 18 years of age, regardless of the level of support required by the child. The instruments used were: Participant Characterization Questionnaire, Pediatric Disability Assessment Inventory (PEDI), Zarit Caregiver Burden Inventory (ISZ), and the Perceived Social Support Scale – Adults (EPSUS – A). The comparison results revealed that mothers are more burdened than fathers, and that both perceive low social support in a similar way. When analyzing the relationships, negative, highly significant, and moderately strong correlations were identified between caregiver burden and all assessed social support factors. In this sense, the study results showed differences in caregiver burden and similarities in the perception of social support, considering the caregivers' gender. Furthermore, it was concluded that social support is an important variable in minimizing caregiver burden for all participants and that it is also necessary to consider other factors in the family context. New studies are needed to expand the investigation into differences between fathers and mothers of people with autism. It is hoped that this research can support new discussions, effective public policies, and interventions aimed at the families of autistic people, as well as the community in which they are inserted, that promote awareness, acceptance, increased social support, and minimize the impacts of overload on the caregiver's mental health, well-being, and quality of life of these families.