PARENTALIDADE E O TRANSTORNO DO ESPECTRO AUTISTA (TEA) NO CONTEXTO SUS: UM ESTUDO SOBRE ESTRESSE PARENTAL E SUPORTE SOCIAL

Abstract

In recent years, Autism Spectrum Disorder (ASD) has emerged as a significant public health challenge due to its increasing prevalence and profound impact on families. Parental stress, a multifactorial phenomenon influenced by child characteristics, socioeconomic conditions, marital support, and symptom severity, substantially affects caregivers' mental health and family dynamics. The majority of caregiving responsibilities fall on mothers, making it essential to investigate how contextual factors shape the experience of atypical parenting and how social support can serve as a protective factor. This dissertation had two central objectives: (1) to map the national and international literature on parental stress and social support in primary caregivers of children with ASD; and (2) to empirically analyze this relationship in families receiving care through Brazil’s Unified Health System (SUS) in Maranhão. To achieve these goals, two distinct studies were conducted, resulting in two manuscripts that constitute this dissertation. The first manuscript was a scoping review aimed at systematizing and discussing the evidence regarding the relationship between social support and parental stress. A search across five scientific databases identified fifteen studies, indicating that parental stress is multifactorial and highlighting the need for interdisciplinary approaches that integrate clinical, psychological, and social dimensions. The second manuscript empirically investigated 94 primary caregivers, predominantly mothers, who were married, mixed-race, had completed high school, and were unemployed. A crosssectional quantitative design was adopted, based on secondary and retrospective data, complemented by prospective information. The study utilized medical records, the Parental Stress Scale (EEPa), and the Perceived Social Support Scale (PSS). Results indicated mild levels of parental stress, with daily stressors related to caregiving overload having the greatest impact. Emotional support emerged as the only significant predictor of stress, explaining approximately 16% of the observed variance. Findings underscore the centrality of emotional support as a protective factor for parental stress, particularly for women who assume most caregiving responsibilities and are often disadvantaged in their professional and social lives. It is concluded that addressing parental stress in families of children with ASD requires both clinical interventions and intersectoral public policies focused on emotional and instrumental support, as well as the strengthening of community networks.