Development of a transition care program for people with Prader-Willi syndrome

Research Project

Project/Area Number	15K11742
Research Category	Grant-in-Aid for Scientific Research (C)
Allocation Type	Multi-year Fund
Section	一般
Research Field	Lifelong developmental nursing
Research Institution	Fukuoka Nursing College (2017) Seinan Jo Gakuin University (2015-2016)
Principal Investigator	IINO HIDECHIKA 福岡看護大学, 看護学部, 教授 (20284276)
Co-Investigator(Kenkyū-buntansha)	中村加奈子福岡看護大学, 看護学部, 講師 (90584516) 青野広子福岡看護大学, 看護学部, 助教 (50733870) 林下里見福岡看護大学, 看護学部, 助手 (20807078) 原山裕子西南女学院大学, 保健福祉学部, 助教 (50593571) 小野淳二宇部フロンティア大学, 人間健康学部, 助教 (20596704)
Research Collaborator	武田康男前北九州市療育センター, 歯科
Project Period (FY)	2015-04-01 – 2018-03-31
Project Status	Completed (Fiscal Year 2017)
Budget Amount *help	¥3,900,000 (Direct Cost: ¥3,000,000、Indirect Cost: ¥900,000) Fiscal Year 2017: ¥1,430,000 (Direct Cost: ¥1,100,000、Indirect Cost: ¥330,000) Fiscal Year 2016: ¥1,300,000 (Direct Cost: ¥1,000,000、Indirect Cost: ¥300,000) Fiscal Year 2015: ¥1,170,000 (Direct Cost: ¥900,000、Indirect Cost: ¥270,000)
Keywords	プラダーウィリー症候群 / トランジション / 看護ケア / 遺伝看護 / プラダーウィリ症候群 / 移行ケア / プラダー・ウィリ症候群 / プラダー・ウィリー症候群
Outline of Final Research Achievements	We focused on the transition of children with Prader-Willi syndrome (PWS) and aimed to clarify the transition contents based on the needs of the PWS. The reason for the transition in pediatrics was "I was tired of other people's interests at the pediatric clinic." "The adaptation disorder developed, and it felt that it could not be correspondent at the pediatric clinic." "When asked about growth hormone replacement therapy, pediatricians were heard" "The child had been seen for about 11 years since the age of 7, but she was very disappointed as a mother because the information of growth hormone replacement therapy was not provided.". It was clarified that the fact that the health care needs of PWS children was not satisfied became the opportunity of the transition.