Avaliação da sobrecarga de cuidadores de autistas vinculados à associação de mães de autistas de Cascavel/PR.

Abstract

Introduction: Autism Spectrum Disorder (ASD) is classified as a neurodevelopmental disorder characterized by impairments in communication, social interaction, and behavioral patterns, with varying degrees of severity. In order to develop public policies and actions aimed at meeting the needs of this population in Brazil, it is essential to understand the sociodemographic and health profile of individuals with autism and their caregivers. However, the country still faces difficulties in consolidating and disseminating epidemiological data on ASD. In addition, studies addressing caregiver burden remain scarce. Objective: To assess the burden of caregivers of autistic individuals linked to the Association of Mothers of Autistic Individuals of Cascavel (AMAC), in the municipality of Cascavel, Paraná, Brazil. Methods: This was a cross sectional, analytical, non-controlled study conducted through online interviews with caregivers/legal guardians of people with ASD who were associated with AMAC and agreed to participate in the study. Sociodemographic and health characteristics were presented using descriptive statistics, including means, standard deviations, and proportions. Caregiver burden was assessed using the Zarit Burden Interview. Pearson’s chi-square test and crude and adjusted logistic regression models were used to analyze associations between the independent variables and the caregiver burden outcome. The statistical significance level was set at 5% (p < 0.05). Results: A total of 98 families associated with AMAC were interviewed. Caregivers were predominantly women (96.4%), aged 18 to 39 years (57%), with a mean age of 38.09 years (SD = 6.23), and most had a partner (57.8%). Family income of up to three minimum wages was predominant (41.7%), as was the absence of social benefits (60.4%). In the adjusted logistic regression analysis, type of treatment (OR = 0.018; 95% CI: 0.001–0.392; p = 0.011) and self-reported burden (OR = 0.052; 95% CI: 0.005–0.594; p = 0.017) were statistically significantly associated with moderate-to severe caregiver burden. Conclusion: The results show a high burden among caregivers of people with ASD, mainly associated with factors related to care organization and access to health services. These findings reinforce the importance of strengthening public policies and expanding support networks for families of people with ASD, contributing to improved quality of life for caregivers and comprehensive care for this population.