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論文
タイトル
タイトル(英)
Educational challenges for 22q11.2 deletion syndrome in Japan: Findings from a mixed methods survey.
参照URL
https://researchmap.jp/nakajima-nm/published_papers/41440273
著者
著者(英)
Miho Tanaka,Akiko Kanehara,Ryo Morishima,Yousuke Kumakura,Noriko Okouchi,Naomi Nakajima,Junko Hamada,Tomoko Ogawa,Hidetaka Tamune,Mutsumi Nakahara,Seiichiro Jinde,Yukiko Kano,Kiyoto Kasai
担当区分
概要
概要(英)
BACKGROUND: The 22q11.2 deletion syndrome (22q11DS) is characterised by a changing pattern of overlapping intellectual, physical, and mental disabilities along the course of one's life. However, the impact of overlapping disorders (multimorbidity) on educational challenges remains unclear. METHOD: A survey was conducted with 88 caregivers of individuals with 22q11DS. A quantitative analysis of educational challenges and support needs divided into age groups (7-12, 13-15, 16-18, and 19 years and over) and a qualitative analysis of the free-text items in the questionnaire was conducted. RESULTS: Caregivers were more interested in comprehensive developmental support when their children were younger, and the emphasis shifted to concerns regarding environments that matched individual characteristics at older ages. Furthermore, when there are multiple disabilities or disorders, support is concentrated on the more obvious disabilities, and the lack of support for the less superficially obvious disabilities associated with multiple difficulties, including mental health problems, can be a challenge for people with 22q11DS and their families. CONCLUSIONS: This study suggests a need for increased focus on multimorbidity and associated disabilities in school education that are difficult to observe because of their mildness or borderline levels if present alone.
出版者・発行元
出版者・発行元(英)
誌名
誌名(英)
Journal of applied research in intellectual disabilities : JARID
開始ページ
終了ページ
出版年月
2023年2月13日
査読の有無
招待の有無
掲載種別
研究論文(学術雑誌)
ISSN
DOI URL
https://doi.org/10.1111/jar.13079
共同研究・競争的資金等の研究課題
研究者
中島 直美 (ナカジマ ナオミ)