Report of sibling care system for the person with chromosomal aberration

染色体畸变者兄弟姐妹照顾制度报告

• 批准号: 21792264
• 负责人: MORIFUJI Kanako
• 金额: $ 1万
• 依托单位: Nagasaki University
• 依托单位国家: 日本
• 项目类别: Grant-in-Aid for Young Scientists (B)
• 财政年份: 2009
• 资助国家: 日本
• 起止时间: 2009 至 2011
• 项目状态: 已结题
• 来源: https://kaken.nii.ac.jp/grant/KAKENHI-PROJECT-21792264/
• 关键词: 小児看護学; きょうだいケア; 小児看護; 染色体障害児; 染色体障害児・者; 自然歴

The aim of this study was to build nursing care system for sibling of the person with Down syndrome. Sibling wanted to know about Down syndrome in childhood, but their parents could not explain because they did not know how to inform. Moreover, inspired of the increase in life expectancy in persons with Down syndrome, their parents have no useful data about their aging. It is very important and pressing problem how the person with Down syndrome will live in community after their parents will be dead. At that time, how their sibling will help to the person with Down syndrome. So it is important to explain sibling since childhood about that Down syndrome have a lot of difficulties in life. For their parents, we have to give information about how to explain to sibling and also about aging of the person with Down syndrome.

本研究的目的是建立唐氏综合症患者兄弟姐妹的护理体系。兄弟姐妹想了解儿童时期的唐氏综合症，但他们的父母无法解释，因为他们不知道如何告知。此外，由于唐氏综合症患者的预期寿命增加，他们的父母没有关于他们衰老的有用数据。父母去世后，唐氏综合症患者如何在社区生活是一个非常重要和紧迫的问题。那时，他们的兄弟姐妹将如何帮助患有唐氏综合症的人。所以向兄弟姐妹解释唐氏综合症在他们的生活中有很多困难是很重要的。对于他们的父母，我们必须提供如何向兄弟姐妹解释的信息以及唐氏综合症患者的年龄。

项目成果

青年期以降ダウン症者へのアンケート調査-外見的変化、行動・精神状態に関する分析-

唐氏综合症患者青春期后问卷调查-外观、行为和精神状态变化分析-

• 发表时间: 2011
• 作者: 森藤香奈子;中根秀之;近藤達郎;本田純久;土居美智子;本村秀樹;森内浩幸;松本正
• 通讯作者: 松本正