Experiências de articulação de cuidado e trabalho vivenciadas pelos cuidadores de crianças com Síndrome Congênita do Zika Vírus.

Abstract

The Zika crisis exacerbated the sociosexual division of labor and intensified labor market inequality between parents of children with disabilities, further marginalizing women. However, research on the working conditions of women caring for children with Congenital Zika Virus Syndrome (CZVS) remains limited. This thesis, presented in three articles, is the result of research grounded in a phenomenological approach and theoretical frameworks developed by European and Latin American feminist scholars. The investigation sought to understand the experiences of these women by describing their daily activities and examining the labor arrangements and working conditions, both domestic and paid, to which they are subjected. In-depth interviews were conducted with 15 women selected based on specific criteria, using a pre-structured script applied through a free virtual platform. The results indicate a merging of the spheres of production and social reproduction, with a predominance of informal and precarious labor arrangements. The nature of the relationship between paid work and caregiving varies depending on the social support network, the technologies involved, and the quality of state participation or omission. It was observed that the Zika epidemic worsened the sociosexual division of labor, severely impacting women, particularly Black women. Among the 15 interviewees, Black women face a greater caregiving burden and a more limited support network, leading to higher levels of informality. On the other hand, White women with previous formal employment face part-time work and double shifts. Additionally, the study investigated maternal perceptions of paternal involvement in the care of children with CZVS. These perceptions reinforce the centrality of the maternal role and the limitations of paternal participation in care, despite the desire for greater involvement. Mothers, however, do not consider fathers capable of handling specific caregiving demands, such as emotional needs. The conclusion is that, despite emerging forms of fatherhood and changes in the sexual division of labor, the marker of "gender" continues to influence the allocation of caregiving tasks, perpetuating the female caregiving burden. It is recommended to expand the research to include non-heterosexual families to analyze how gender operates in the division of care in other family configurations and to identify variations and continuities in contemporary caregiving dynamics.