Perceptions of mothers about the quality of life of children with hydrocephalus

Abstract

Objective: to understand the perceptions of mothers about the quality of life of children with hydrocephalus. Methods: qualitative research carried out in a pediatric public hospital with twelve mothers of children with hydrocephalus. Data were collected from semi-structured interviews and the content analysis was performed. Results: according to the mothers, children with hydrocephalus had a considerable motor deficit, but some managed to perform this function properly. The emotional status had not presented a significant change, and in relation to school performance, the majority was not studying in school or could not keep up with the learning rhythm of the others, however, they managed to maintain good interpersonal relationships. Conclusion: children with hydrocephalus presented deficits in motor, educational and emotional development, but they had no impairment in interpersonal relationships, according to mothers' perceptions. Descriptors: Hydrocephalus; Quality of Life; Child.Objetivo: compreender as percepções de mães acerca da qualidade de vida de crianças com hidrocefalia. Métodos: pesquisa qualitativa, realizada com doze mães de crianças com hidrocefalia, em um hospital público pediátrico. Dados coletados a partir de entrevistas semiestruturadas e realizada análise de conteúdo. Resultados: de acordo com as mães, as crianças com hidrocefalia possuíam déficit motor considerável, porém algumas conseguiam desempenhar essa função adequadamente. O estado emocional não apresentou alteração importante; e com relação ao desempenho escolar, a maioria não estudava ou não conseguia acompanhar o ritmo de aprendizado das demais, contudo, mantinham bom relacionamento interpessoal. Conclusão: as crianças com hidrocefalia apresentaram déficit nos desenvolvimentos motor, educacional e emocional, porém sem prejuízos no relacionamento interpessoal, de acordo com as percepções maternas.

Clinical and morphological aspects in children affected with hydranencephaly: an overview

“…It was observed a great rejection, by the families, of children with some disability, in view of this, the authors concluded that when a family member suffers prejudices for having a disability, the whole family is affected. However, several reports of mothers abandoned by their partners, after the birth of a son / daughter with hydranencephaly (TORRES et al, 2017).…”