Construction of a theoretical framework for a care guide for people with 22q 11.2 deletion syndrome
| Project/Area Number |
15K15859
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| Research Category |
Grant-in-Aid for Challenging Exploratory Research
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| Allocation Type | Multi-year Fund |
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| Research Field |
Lifelong developmental nursing
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| Research Institution | Niigata College of Nursing |
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Principal Investigator |
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| Co-Investigator(Kenkyū-buntansha) |
山田 真衣 新潟県立看護大学, 看護学部, 助教 (20588470)
エルダトン サイモン 新潟県立看護大学, 看護学部, 講師 (30512066)
永吉 雅人 新潟県立看護大学, 看護学部, 准教授 (70426542)
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| Co-Investigator(Renkei-kenkyūsha) |
Nakagomi Satoko 山梨大学, 大学院総合研究部, 教授 認定遺伝カウンセラー (10254484)
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| Research Collaborator |
Hayashi Nobuhiko King's College Hospital, 胎児科, 医師
Nishijou Tatuya 飯山赤十字病院, 看護師長
Yasukouchi Satoshi 長野こども病院, 循環器センター長兼院長補佐
Noguchi Masahiko 長野こども病院, 3Dモデル造形センター長兼形成外科 部長
Shiozaki akiko 長野こども病院, 療育支援部, 認定チャイルド・ライフ・スペシャリスト
kondou Yuka 長野こども病院, 認定遺伝カウンセラー兼看護師
Kiryu Toru 上越教育大学, 大学院学校教育研究科, 教授
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| Project Period (FY) |
2015-04-01 – 2018-03-31
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| Project Status |
Completed (Fiscal Year 2017)
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| Budget Amount *help |
¥3,120,000 (Direct Cost: ¥2,400,000、Indirect Cost: ¥720,000)
Fiscal Year 2017: ¥650,000 (Direct Cost: ¥500,000、Indirect Cost: ¥150,000)
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)
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| Keywords | 22q11.2欠失症候群 / ケアガイド / 成人期移行支援 / 長期的なケア / 学校 / 支援体制 / マネジメント / 連携 / 家族 / 支援 / 就学期 / 成人移行期支援 |
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| Outline of Final Research Achievements |
We surveyed individuals with 22q11.2 deletion syndrome and their families with regard to their experiences and difficulties arising from living with this disorder through to adulthood. The results indicate that the affected families go through life in a fog of anxiety, unable to visualize the affected child’s future due to a lack of information regarding the disorder and how it may affect their child’s long term outcomes as an adult. We created a theoretical framework for a care guide that can provide comprehensive support from childhood to adulthood. In addition, we visited the Children’s Hospital of Philadelphia 22q and You Center to investigate advanced support practices, and participated in international conferences on 22q11.2 deletion syndrome to share information and stay informed of current developments in best support practices. We also established a support service that offers information and advice through a support organization, the NPO for Family and Baby Wellness.
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Report
(4 results)
Research Products
(10 results)
