“The fight is ours”: the experience of caregivers of children with congenital zika syndrome

Abstract

The study analyzed the experience of caregivers of children with congenital zika syndrome, both in family and social context. It is a qualitative study with ten caregivers of children with congenital zika virus syndrome, in a Pernambuco referral service for children with disabilities, from November 2018 to March 2019. Data were collected through semistructured interviews and interpreted by thematic analysis. Caregivers, especially mothers, dedicate themselves entirely to their syndromic children’s care, facing daily struggles in search of better living conditions, abandoning dreams, jobs, studies and facing financial difficulties as well as for the care of other children. Thus, health actions focused on the uniqueness of families are necessary to enable the offer and / or strengthening of support networks as well as to expand the possibilities for better living conditions for both women and their children with the syndrome.