The Development of a Genetic Nursing Education Program for Nurses : Genetic Nursing for Hereditary Nerve Incurable Disease Patients and their Families

护士遗传护理教育项目的开发：遗传性神经疑难杂症患者及其家属的遗传护理

• 批准号: 20592542
• 负责人: KUKINAKA Chieko
• 金额: $ 2.91万
• 依托单位: Kumamoto University
• 依托单位国家: 日本
• 项目类别: Grant-in-Aid for Scientific Research (C)
• 财政年份: 2008
• 资助国家: 日本
• 起止时间: 2008 至 2011
• 项目状态: 已结题
• 来源: https://kaken.nii.ac.jp/grant/KAKENHI-PROJECT-20592542/
• 关键词: 遺伝; 難病; 神経疾患; 看護; 患者; 家族; 神経難病; 患者・家族; 看護職; 教育プログラム

This research focused on the familial amyloidtic polyneropathy which is hereditary nerve incurable disease. The purpose of this research is to develop the heredity nursing education program to a nurse based on the needs investigation to patients and a families, and a nurse. The needs investigation to patients and families showed the following things. The patients and families had various suffering and conflicts. Moreover, the nurse felt difficulty for the care to the hereditary disease. The contents incorporated in an educational program were examined based on these results.

这项研究的重点是家族性淀粉样蛋白多肌病，这是遗传性神经无法治愈的疾病。这项研究的目的是根据对患者和家庭以及护士的需求调查为护士开发遗传护理教育计划。对患者和家庭的需求调查显示了以下内容。患者和家庭有各种痛苦和冲突。此外，护士对遗传疾病的护理感到困难。根据这些结果检查了教育计划中纳入的内容。

项目成果

The Development of a Genetic Nursing Education Program for Nurses : Genetic Nursing for Familial Amyloidotic Polyneuropathy Patients and their Families

护士遗传护理教育计划的开发：家族性淀粉样多发性神经病患者及其家人的遗传护理

• 发表时间: 2009
• 作者: 田中克子;末原君代;小田和美;和栗正子;川村智行;Chieko Kukinaka
• 通讯作者: Chieko Kukinaka

Experiences of Families with inherited nerve intractable disease who receive presymptomatic genetic testing in japan-analysis of familial amyloidotic polyneuropathy, family narrative-

日本遗传性神经难治性疾病家庭接受症状前基因检测的经验-家族性淀粉样多发性神经病分析、家庭叙述-

• 发表时间: 2011
• 作者: Chieko Kukinaka;Satoko Nakagomi;Mitsu Ono;Hitomi Maeda Hiromi;Kawasaki Yukio;Ando
• 通讯作者: Ando

遺伝性神経難病患者家族の体験-当事者の語りからみえるもの-

遗传性难治性神经系统疾病患者家属的经历——从受影响者的故事中可以看出——

• 发表时间: 2010
• 作者: 柊中智恵子;中込さと子;小野ミツ;前田ひとみ
• 通讯作者: 前田ひとみ

Experiences of Families with inherited nerve intractable disease who receive presymptomatic genetic testing in japan. analysis of familial amyloidotic polyneuropathy、family narrative-

在日本接受家族性淀粉样多发性神经病症状前基因检测的遗传性神经难治性疾病家庭的经验，家庭叙述-

• 发表时间: 2011
• 作者: Chieko Kukinaka;Satoko Nakagomi;Mitsu Ono;Hitomi Maeda;Hiromi Kawasaki;Yukio Ando
• 通讯作者: Yukio Ando

遺伝性神経難病患者家族の体験

遗传性难治性神经系统疾病患者家属的经历

• 发表时间: 2010
• 作者: 柊中智恵子;中込さと子;小野ミツ;前田ひとみ
• 通讯作者: 前田ひとみ