• Viruses Basel · Dec 2020

    "Life Is Taking Me Where I Need to Go": Biographical Disruption and New Arrangements in the Lives of Female Family Carers of Children with Congenital Zika Syndrome in Pernambuco, Brazil.

    • Ana Paula Lopes de Melo, Tereza Lyra, Thália Velho Barreto de Araújo, Maria do Socorro Veloso de Albuquerque, Sandra Valongueiro, Hannah Kuper, and Loveday Penn-Kekana.
    • Collective Health Centre, Academic Centre of Vitoria, Federal University of Pernambuco, Vitoria de Santo Antão 55608-680, Brazil.
    • Viruses Basel. 2020 Dec 8; 12 (12).

    AbstractThe congenital Zika syndrome (CZS) epidemic in Brazil turned the spotlight on many other factors beyond illness, such as poverty, gender, and inequalities in health care. Women were the emblematic subjects in this study, not only because Zika virus is a vertical transmission disease, but also because women-in Brazil and elsewhere-typically represent the primary carers of children. This is a qualitative analytic study using semi-structured interviews with 23 female family carers of children with CZS in Brazil. Through the concept of biographical disruption, we analysed some of the social impacts experienced by women involved in caring for affected children. We identified that the arrival of a child with disabilities resulted in biographical disruption similar to that experienced by people with chronic illnesses. Social support networks were configured through an alliance between women from different generations, revealing solidarity networks, but also highlighting the absence of the state in tackling these social vulnerabilities. Tracing the pathways of these biographical narratives enables us to understand how women have acted to defend the value of their disabled children in a society structured on the model of body normativity and inequality. These results may provide clues to a more inclusive society, which confronts systems of gender oppression and the sexual division of labour focused on women.

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