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

2011 Fiscal Year Final Research Report

• Project/Area Number: 20592542
• Research Category: Grant-in-Aid for Scientific Research (C)
• Allocation Type: Single-year Grants
• Section: 一般
• Research Field: Clinical nursing
• Research Institution: Kumamoto University
• Principal Investigator: KUKINAKA Chieko 熊本大学, 大学院・生命科学研究部, 准教授 (60274726)
• Co-Investigator(Kenkyū-buntansha): NAKAGOMI Satoko 山梨大学, 大学院・医学工学総合研究部, 教授 (10254484) ; ONO Mitsu 九州大学, 大学院・医学系学府保健学専攻, 教授 (60315182) ; MAEDA Hitomi 熊本大学, 大学院・生命科学研究部, 教授 (90183607)
• Co-Investigator(Renkei-kenkyūsha): MUTO Kaori 東京大学, 医科学研究所, 准教授 (50345766)
• Research Collaborator: KITAGAWA Sayomi 熊本大学, 医学部附属病院, 看護師長 ; YANO Fumika 熊本大学, 医学部附属病院, 看護師長 ; MURAKAMI Rieko 熊本大学, 医学部附属病院, 副看護師長 ; FUKUDA Yukari 元熊本大学, 医学部附属病院, 副看護師長
• Project Period (FY): 2008 – 2011
• Keywords: 遺伝 / 難病 / 神経疾患 / 看護 / 患者 / 家族

Research Abstract

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.

Research Products

• [Presentation] Experiences of Families with inherited nerve intractable disease who receive presymptomatic genetic testing in japan. analysis of familial amyloidotic polyneuropathy、family narrative- (2011)
  • Author(s): Chieko Kukinaka, Satoko Nakagomi, Mitsu Ono, Hitomi Maeda, Hiromi Kawasaki, Yukio Ando
  • Organizer: VIIIth International Symposium on Familial Amyloidotic Polyneuropathy
  • Place of Presentation: Kumamoto City Medical Association Hall(kumamoto Japan)
  • Year and Date: 20111120-22
• [Presentation] 遺伝性神経難病患者家族の体験 (2010)
  • Author(s): 柊中智恵子, 中込さと子, 小野ミツ, 前田ひとみ
  • Organizer: 第30回日本看護科学学会
  • Place of Presentation: 札幌コンベンションセンター・札幌市産業振興センター(北海道)
  • Year and Date: 20101203-04
• [Presentation] The Development of a Genetic Nursing Education Program for Nurses : Genetic Nursing for Familial Amyloidotic Polyneuropathy Patients and their Families (2009)
  • Author(s): Chieko Kukinaka, Mitsu Ono, Satoko Nakagomi, Hitomi Maeda, Kaori Muto, Sayomi Kitagawa, Fumika Yano, Yukari Fukuda, Rieko Murakami
  • Organizer: The 1st International Nursing Research Conference of World Academy of Nursing Science(WANS)
  • Place of Presentation: Kobe International Exhibition Hall(Kobe、Japan)
  • Year and Date: 20090919-20
• [Presentation] 遺伝性神経難病患者・家族と看護職の協働教育プログラム開発の提言-家族性アミロイドポリニューロパチーに関する文献検討をもとに- (2009)
  • Author(s): 柊中智恵子, 小野ミツ, 中込さと子, 前田ひとみ, 武藤香織
  • Organizer: 第8回日本遺伝看護学会学術集会
  • Place of Presentation: 広島大学広仁会館(広島)
  • Year and Date: 20090911-12