2022 Fiscal Year Final Research Report
Enrollment status of pupils with rare genetic diseases of special education schools and the information needs of their supervising teachers
| Project/Area Number |
17K04959
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Multi-year Fund |
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| Section | 一般 |
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| Research Field |
Special needs education
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| Research Institution | Kansai University of Welfare Sciences |
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Principal Investigator |
Kato Yoshiro 関西福祉科学大学, 教育学部, 教授 (40615829)
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| Co-Investigator(Kenkyū-buntansha) |
蓑崎 浩史 広島修道大学, 健康科学部, 教授 (20711170)
嶋崎 まゆみ 兵庫教育大学, 学校教育研究科, 准教授 (70319995)
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| Project Period (FY) |
2017-04-01 – 2023-03-31
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| Keywords | 遺伝性疾患 / 特別支援学校 / 在籍状況 / 行動表現型 |
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| Outline of Final Research Achievements |
The purpose of this study was to clarify the enrollment status in special education school of pupils with genetic diseases that have a high correlation to intellectual disability. As a result, 13.3% of pupils were identified as having such genetic diseases. The secondary purpose was to survey teachers of pupils with special educational needs to clarify teachers’ knowledge about the behavioral phenotypes, and their awareness of the difficulties, for example behavior or cognitive aspects, of six such genetic diseases. The survey highlighted that the degree of knowledge about the behavioral phenotypes of each disease, and the difficulties that pupils with each syndrome faced varied for the six diseases. In addition, we provided booklets detailing the outcomes of these studies and additional studies, literature reviews or investigative studies on three of the six diseases, to schools that cooperated with this study.
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| Free Research Field |
特別支援教育学
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| Academic Significance and Societal Importance of the Research Achievements |
知的障害の病因となるリスクの高い遺伝性疾患は1,600以上あるとされる。ダウン症候群などのいくつかを除く多くの疾患は、出生率が10,000人に１人以下の希少疾患であるが、近年の遺伝医学の進歩に伴い、今後も遺伝性疾患のある児童生徒の増加が予測される。しかしながら、その状況把握や教育的支援に活かすことのできる資料などは限られている。本研究は、このような疾患のわが国における在籍状況を初めて明らかにすることにおいて、今後の支援構築のための基礎資料を作成することに寄与し、加えて教育や支援の現場で役立つような日本語の情報や資料を作成した点において意義があると考える。
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