Educação em saúde para o autocuidado e a invisibilidade do cuidado feminino: um estudo com mulheres mães de crianças e adolescentes com TEA

Abstract

Introduction: Caregiving has historically been an activity performed by women within families, with little state support. The social organization of care disproportionately harms those in poverty, as observed among women in the Seridó region of Brazil. These women dedicate more hours to caregiving due to the lack of public care facilities. This research investigates the invisibility of female caregiving and the role of mothers of children and adolescents with Autism Spectrum Disorder (ASD). Objective: This study aims to understand the relational dynamics of caregiving and the inherent challenges faced by mothers who assume caregiving roles. Grounded in intersectionality theories of social markers such as gender, race, and social class. Methodology: the research adopts an exploratory qualitative approach using focus groups to explore these mothers’ experiences, including the emotional, physical, and cognitive dimensions of caregiving, their interactions with healthcare services, and self-care strategies. Two focus group sessions were conducted in 2024 with mothers of children/adolescents with ASD receiving care at the Specialized Rehabilitation Center (CER III) in Caicó/RN, Brazil. Data were collected via audio recordings, later transcribed by the researcher, and analyzed through a hermeneutic analytical method to interpret the underlying meanings of cultural and social practices. Results: The findings reveal the overload on mother caregivers, the state’s absence in developing inclusive care policies, the "naturalization" of caregiving as a familial (and predominantly female) role, and the lack of time for self-care. Final Considerations: The study hopes to foster reflections on the invisibility of female caregiving among mothers of children/adolescents with ASD and contribute to improving services at CERT III in Caicó-RN. It underscores the need for interventions to promote new care practices, reduce gender inequality, combat the invisibility of maternal overload, and advance innovative models to better structure formal and informal care networks for children/adolescents with ASD.