The other victims: quality of life of mothers/caregivers of children with congenital Zika Virus syndrome / As outras vítimas: qualidade de vida das mães/responsáveis por crianças com síndrome congênita do Vírus Zika

Abstract

Objective. Identify the best way to support mothers/caregivers of children with congenital Zika virus syndrome (CZS) through quality of life analysis.Method.Sample consisting of 57 mothers/caregivers of children diagnosed with microcephaly associated with CZS, interviewed in the State of Pernambuco, Brazil, in 2016. Cross-sectional study with a descriptive approach and assessment of quality of life using the instrument “The Pediatric Quality of Life Inventory 2.0 (PedsQL) – Family Impact Module.” Results. The mothers/caregivers of children with CZS: a) were around 30 years old; b) lived in the Metropolitan Region of Recife (RegiãoMetropolitana do Recife [Grande Recife]); and c) lost almost 50% of their quality of life after the birth of the children. Conclusion. The support network for children with microcephaly must seek to reduce the negative impact of motherhood via support for the preservation of the physical and mental integrity of mothers/caregivers.