QUALITY OF LIFE OF MOTHERS OF CHILDREN WITH CONGENITAL SYNDROME AFFECTED BY ZIKA VIRUS.

OBJECTIVE: To investigate how mothers of children with congenital syndrome (microcephaly) associated with Zika virus perceive their quality of life. METHODS: This is a qualitative study carried out in two stages: at the Maternal and Child University Hospital and at Casa de Apoio Ninar through semi-structured interviews with mothers of children with congenital syndrome associated with Zika virus. Ten women comprised the sample. RESULTS: In line with the critical discourse analysis, four categories emerged based on Fairclough's 2008 assumptions: Quality of Life and Health - quality of life perception associated with the broad meaning of the term health; Quality of Life and Health Care Systems - characterized by care instability and fragmentation; Quality of Life and Free Time - lack of free time for activities of daily living and leisure; Quality of Life and Future Perspectives - lack of future perspective, considering that most participants had to stop working and studying to take care of their children. CONCLUSIONS: Mothers of children with congenital syndrome associated with Zika virus are devoted to their children's care. Their lack of prospects was considered a consequence of the lack of time for activities of daily living and leisure.

Quality of life of mothers of children with congenital syndrome affected by zika virus / Qualidade de vida de mães de crianças com síndrome congênita afetadas pelo zika vírus

ABSTRACT Objective: To investigate how mothers of children with congenital syndrome (microcephaly) associated with Zika virus perceive their quality of life. Methods: This is a qualitative study carried out in two stages: at the Maternal and Child University Hospital and at Casa de Apoio Ninar through semi-structured interviews with mothers of children with congenital syndrome associated with Zika virus. Ten women comprised the sample. Results: In line with the critical discourse analysis, four categories emerged based on Fairclough's 2008 assumptions: Quality of Life and Health - quality of life perception associated with the broad meaning of the term health; Quality of Life and Health Care Systems - characterized by care instability and fragmentation; Quality of Life and Free Time - lack of free time for activities of daily living and leisure; Quality of Life and Future Perspectives - lack of future perspective, considering that most participants had to stop working and studying to take care of their children. Conclusions: Mothers of children with congenital syndrome associated with Zika virus are devoted to their children's care. Their lack of prospects was considered a consequence of the lack of time for activities of daily living and leisure.

RESUMO Objetivo: Investigar a percepção da qualidade de vida das mães de crianças portadoras de síndrome congênita (microcefalia) associada ao Zika vírus. Métodos: Trata-se de um estudo qualitativo realizado em duas etapas. A primeira foi conduzida no Hospital Universitário Materno-Infantil e a segunda na Casa de Apoio Ninar, por meio de entrevista semiestruturada com mães de crianças que apresentam a síndrome congênita associada ao Zika vírus. A amostra foi composta por 10 mulheres. Resultados: Em consonância com a análise crítica do discurso, segundo os pressupostos de Fairclough, de 2008, quatro categorias emergiram: Qualidade de Vida e Saúde - a percepção da qualidade de vida está vinculada ao significado amplo do termo saúde; Redes de Qualidade de Vida e Atenção à Saúde - caracterizadas por precariedade e fragmentação do cuidado; Qualidade de Vida e Tempo Livre - falta de tempo livre para realizar atividades da vida diária e lazer; Qualidade de Vida e Perspectivas Futuras - foi abordada a falta de perspectiva futura, uma vez que a maioria das participantes teve que parar de trabalhar e estudar para cuidar dos filhos. Conclusões: Mães de crianças com síndrome congênita associada ao vírus Zika são totalmente dedicadas ao cuidado de seus filhos. A falta de perspectivas para o futuro foi considerada em decorrência da falta de tempo para lazer e atividade da vida diária.