Universidade Federal do Maranhão, São Luís, MA, Brazil.
Universidade de São Paulo, Ribeirão Preto, SP, Brazil.
Rev Paul Pediatr. 2021;39:e2019231. doi: 10.1590/1984-0462/2021/39/2019231. Epub 2020 Aug 21.
To investigate how mothers of children with congenital syndrome (microcephaly) associated with Zika virus perceive their quality of life.
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.
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.
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.
调查 Zika 病毒相关先天性综合征（小头畸形）患儿的母亲如何感知自身生活质量。
这是一项在两个阶段进行的定性研究：在母婴大学医院和 Casa de Apoio Ninar 通过对 Zika 病毒相关先天性综合征患儿的母亲进行半结构化访谈。样本由 10 名女性组成。
根据费尔克劳 2008 年的假设，进行了批判性话语分析，出现了四个类别：生活质量和健康——与健康一词的广泛含义相关的生活质量感知；生活质量和医疗保健系统——以护理不稳定和碎片化为特征；生活质量和闲暇时间——日常生活和休闲活动缺乏自由时间；生活质量和未来展望——缺乏未来展望，因为大多数参与者为了照顾孩子不得不停止工作和学习。
Zika 病毒相关先天性综合征患儿的母亲专注于照顾孩子。她们缺乏前景被认为是日常生活和休闲活动缺乏时间的结果。
