Abstract
The 2015-2016 Zika outbreaks in Brazil highlighted several pre-existing socioeconomic inequalities in the country, as the poorest and most vulnerable parts of the population were disproportionately affected by the virus. Nearly 3000 children were born with Congenital Zika Syndrome, most commonly associated with foetal microcephaly, during the epidemic that was declared a Public Health Emergency of International Concern. The majority of the children were born into impoverished and disenfranchised families in the Northeast region of the country. This study explores the experiences and challenges faced by the mothers to children with Congenital Zika Syndrome, nearly two years after the height of the epidemic. This is a qualitative study, based on two months of fieldwork in the state of Paraíba in the Northeast of Brazil. Through the analysis of focus group discussions and individual interviews with affected women, this study explores how the mothers’ experiences and struggles are shaped by the social, cultural, economic and political context. A number of health personnel involved in the care for the children with Congenital Zika Syndrome were also interviewed, as well as the Health Secretary of Paraíba State, to provide further insights into the situation of the mothers and their children. The findings suggest that the mothers were experiencing a number of challenges related to their care-taking responsibilities for children with Congenital Zika Syndrome, including exhaustion, financial constraints and barriers in access to health care. Many were also subject to various forms of discrimination, stigma and prejudice. In addition to exploring these issues, this study describes the various ways in which the mothers managed the challenges they faced. The insights provided by this study suggest that the mothers to Children with Congenital Zika Syndrome and their families are in need of more support, including day-to-day assistance, increased financial support, and improved access to health care for their children.