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[巴西伯南布哥州佩特罗利纳先天性寨卡综合征患儿的家庭动态]

[Family dynamics of children with congenital Zika syndrome in Petrolina, Pernambuco State, Brazil].

作者信息

Sá Simone Aline Araújo Guimarães de, Galindo Claudia Cavalcanti, Dantas Regina Santos, Moura José Carlos de

机构信息

Universidade Federal do Vale do São Francisco, Petrolina, Brasil.

出版信息

Cad Saude Publica. 2020 Feb 21;36(2):e00246518. doi: 10.1590/0102-311X00246518. eCollection 2020.

Abstract

Brazil witnessed a significant increase in the number of cases of microcephaly in infants born in the second semester of 2015. There were 162 cases in 2014, increasing to 1,608 in 2015. The condition is associated with impairments in various bodily functions, leading to limitations in infant development. This study aims to analyze the family dynamics of children with congenital Zika syndrome (CZS) in Petrolina, Pernambuco State. Data collection used consultation in patient charts and interviews with parents using a semi-structured script. A qualitative/quantitative approach was used, including all of the mothers and other family members accompanying children with CZS at the referral unit, the Amália Granja Alencar Clinic. Discourse analysis applied the content analysis technique. The results in the category "changes in daily living" for families of children with CZS were grouped into three subcategories: activities of daily living (ADL), financial and occupational impacts associated with the CZS diagnosis, and changes in the marital relationship after the diagnosis. The study showed that care for the child with CZS is mostly concentrated in women in the family, and that the diagnosis leads to significant changes in the family dynamics, with the child's extensive dependence on the caregiver, increasing expenses, and work absenteeism.

摘要

2015年下半年出生的巴西婴儿中,小头畸形病例数显著增加。2014年有162例,到2015年增至1608例。这种病症与多种身体功能受损有关,导致婴儿发育受限。本研究旨在分析伯南布哥州佩特罗利纳市患有先天性寨卡综合征(CZS)儿童的家庭动态。数据收集采用查阅病历以及使用半结构化脚本对家长进行访谈的方式。采用了定性/定量方法,纳入了在转诊单位阿马利亚·格兰哈·阿伦卡尔诊所陪伴患有CZS儿童的所有母亲及其他家庭成员。话语分析运用了内容分析技术。患有CZS儿童家庭在“日常生活变化”类别下的结果分为三个子类别:日常生活活动(ADL)、与CZS诊断相关的财务和职业影响,以及诊断后婚姻关系的变化。研究表明,对患有CZS儿童的照料大多集中在家庭中的女性身上,并且该诊断导致家庭动态发生显著变化,包括孩子对照料者的高度依赖、费用增加以及工作缺勤。

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