Sobrecarga Emocional e Qualidade de Vida em Mães de Crianças com Erros Inatos do Metabolismo

Abstract

This study aims to investigate the perception of women having children with Inborn Errors of Metabolism (IEM) about the experienced emotional burden and their own quality of life. The participants were 21 mothers of children with IEM, with serious neurological injury. The children were of both sexes, up to ten years old. Data collection was accomplished through instruments WHOQOL-Bref and Burden Interview. The data were statistically analyzed and compared. The care of children with IEM interfere in a negative way in the quality of life of the mother, especially in the domain of their social relations, resulting in an emotional burden; the greater the burden, the lower the perceived quality of life.