How do mothers feel? Life with children with congenital Zika syndrome
Paula de Souza Silva Freitas, Gabriella Barreto Soares, Helaine Jacinta Salvador Mocelin, Larissa Carolina Xavier Lacerda, Carolina Maia Martins Sales, Ana Rosa Linde‐Arias, Elda C.A. Bussinger, Ethel Leonor Nóia Maciel
Abstract
OBJECTIVE: To describe the repercussions, from the perspectives of caregiver mothers, of confirmed congenital Zika syndrome (CZS) in their offspring. METHODS: A descriptive-exploratory study with a qualitative approach was carried out in the state of Espírito Santo in southeastern Brazil, with 25 women who had a child diagnosed with CZS. RESULTS: Emerging themes from the content analysis were grouped into two categories: (1) inequalities experienced by mothers, including social inequality, poverty, and gender inequality; (2) the impact of a child with CZS on mothering, including feelings at the time of diagnosis, maternal isolation and mental health, experiences of stigma and prejudice, and exhausting itineraries searching for therapeutic care. CONCLUSION: The repercussions of CZS were a huge burden on already vulnerable women, and social inequalities and poverty were important markers in the mothers' reports. Many of the families affected by CZS already lived in precarious social conditions and these conditions were exacerbated further. Robust public and social policies to support these mothers need effective implementation given that babies born with CZS need long-term care and support.