唐氏综合症诊断消息对父亲感知的反应

B. Bianchi, Cariza de Cássia Spinazola, Márcia Duarte Galvani
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引用次数: 0

摘要

孩子的出生是一个家庭生命周期的一部分。自受孕以来,孩子已经是一系列期望的结果。本研究的目的是描述和分析唐氏综合症(DS)儿童的父母对诊断唐氏综合症的消息的反应,以及为照顾孩子而得到的支持。这项研究的设计是一种描述性的混合方法。它被用于数据收集:一个半结构化的采访脚本与父亲的特征。参与研究的是10位年龄在0 - 6岁之间诊断为DS的儿童家长(男性)。与父母的联系是通过圣保罗州内陆一个城市的DS患者共存研究所进行的。与家长的数据收集在研究所的场地或参与者自己的住所进行。对访谈的定性数据进行分类,进行内容分析。结果显示,就如何给予退行性残疾的消息而言,大多数父母是在孩子出生后收到消息的。关于他们接收消息的方式的变化,两位家长报告说,情况可能会有所不同,医生可能会更加微妙。关于照料支助,应当指出,部分父母在照料子女方面得到了个人和财政支助。该研究表明,专业人士需要重新评估新闻时刻,干预措施应侧重于儿童和家庭。
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Reações da notícia do diagnóstico da síndrome de Down na percepção paterna
The birth of a child is part of a family's life cycle. Since its conception, the child is already the result of a series of expectations. The aim of this research was to describe and analyze the reactions of parents of children with Down syndrome (DS) to the news of the diagnosis of the syndrome and the support received for the care of the child. The design of this research was a mixed approach of a descriptive nature. It was used for data collection: a semi-structured interview script with paternal characterization. Participated in the research 10 parents (men) of children diagnosed with DS in the age group from 0 to 6 years old. The contact with the parents took place through an Institute for the coexistence of people with DS in a city in the interior of the state of São Paulo. Data collection with parents took place on the premises of the Institute or at the residence of the participants themselves. Content analysis was performed with the categorization of qualitative data from the interviews. The results showed that in terms of how the news of DS was given, most parents received the news after the child's birth. Regarding changes in the way they received the news, two parents reported that it could be different, doctors could be more subtle. For support for care, it is noted that part of the parents received personal and financial support for the care of their children. The study showed that the moment of news needs to be reassessed by professionals, and that interventions should focus on children and families.
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10 weeks
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