{"created":"2023-06-19T08:00:31.763774+00:00","id":124,"links":{},"metadata":{"_buckets":{"deposit":"971ca5ae-c0c0-4438-9545-f7838e38a2fa"},"_deposit":{"created_by":5,"id":"124","owners":[5],"pid":{"revision_id":0,"type":"depid","value":"124"},"status":"published"},"_oai":{"id":"oai:tohto-u.repo.nii.ac.jp:00000124","sets":["21:24"]},"author_link":["616","612","613","615","614"],"item_10002_biblio_info_7":{"attribute_name":"書誌情報","attribute_value_mlt":[{"bibliographicIssueDates":{"bibliographicIssueDate":"2022-05","bibliographicIssueDateType":"Issued"},"bibliographicIssueNumber":"1","bibliographicPageEnd":"10","bibliographicPageStart":"1","bibliographicVolumeNumber":"12","bibliographic_titles":[{"bibliographic_title":"東都大学紀要"},{"bibliographic_title":"Tohto University bulletin","bibliographic_titleLang":"en"}]}]},"item_10002_description_5":{"attribute_name":"抄録","attribute_value_mlt":[{"subitem_description":"目的 近年、小児期発症疾患を持つ児の成人期医療への移行期医療が重要な課題になっている。本研究は、円滑な移行期医療システムを検討するため先天性希少難病児を養育する親の移行期医療への受け止め方を知る目的で実施した。対象と方法 先天性希少難病を持つ3人のAYA世代の児を養育する親5人を対象に、面接調査を行った。逐語録はM-GTAを参考に分析した。結果 分析の結果、次の4つのカテゴリーが抽出された。【移行期医療への不安と憂鬱】【移行期医療推進への反発と現状維持の強い希望】【新しい関係から生じる感謝と信頼】【児のQOL向上への願いに伴う新治療法開発への期待】考察 移行期医療の実現には、疾患の特性や児と親の意思を尊重し、多職種が連携した包括的支援が不可欠である。親が絶大な信頼を寄せる小児医療者との関係性を維持しながら成人期医療を円滑に導入するシステムを検討する必要がある。(著者抄録)","subitem_description_type":"Abstract"}]},"item_10002_identifier_registration":{"attribute_name":"ID登録","attribute_value_mlt":[{"subitem_identifier_reg_text":"10.50818/00000104","subitem_identifier_reg_type":"JaLC"}]},"item_10002_publisher_8":{"attribute_name":"出版者","attribute_value_mlt":[{"subitem_publisher":"東都大学"}]},"item_10002_source_id_9":{"attribute_name":"ISSN","attribute_value_mlt":[{"subitem_source_identifier":"2435-8878","subitem_source_identifier_type":"ISSN"}]},"item_creator":{"attribute_name":"著者","attribute_type":"creator","attribute_value_mlt":[{"creatorNames":[{"creatorName":"田崎, 知恵子"},{"creatorName":"タザキ, チエコ","creatorNameLang":"ja-Kana"},{"creatorName":"TAZAKI, Chieko","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"612","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"久保, 恭子"},{"creatorName":"クボ, キョウコ","creatorNameLang":"ja-Kana"}],"nameIdentifiers":[{"nameIdentifier":"613","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"坂口, 由紀子"},{"creatorName":"サカグチ, ユキコ","creatorNameLang":"ja-Kana"}],"nameIdentifiers":[{"nameIdentifier":"614","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"KUBO, Kyoko","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"615","nameIdentifierScheme":"WEKO"}]},{"creatorNames":[{"creatorName":"SAKAGUCHI, Yukiko","creatorNameLang":"en"}],"nameIdentifiers":[{"nameIdentifier":"616","nameIdentifierScheme":"WEKO"}]}]},"item_files":{"attribute_name":"ファイル情報","attribute_type":"file","attribute_value_mlt":[{"accessrole":"open_date","date":[{"dateType":"Available","dateValue":"2022-08-29"}],"displaytype":"detail","filename":"kiyo12_1_p1-10.pdf","filesize":[{"value":"1.2 MB"}],"format":"application/pdf","license_note":"©東都大学2022","licensetype":"license_note","mimetype":"application/pdf","url":{"label":"kiyo12_1_p1-10","url":"https://tohto-u.repo.nii.ac.jp/record/124/files/kiyo12_1_p1-10.pdf"},"version_id":"a2eb78c6-d169-4097-853c-b3d7b4599771"}]},"item_keyword":{"attribute_name":"キーワード","attribute_value_mlt":[{"subitem_subject":"AYA世代","subitem_subject_scheme":"Other"},{"subitem_subject":"小児期発症疾患","subitem_subject_scheme":"Other"},{"subitem_subject":"移行期医療","subitem_subject_scheme":"Other"},{"subitem_subject":"親","subitem_subject_scheme":"Other"},{"subitem_subject":"体験","subitem_subject_scheme":"Other"},{"subitem_subject":"Adolescent and young adult generation","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"Childhood-onset disease","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"Transitional medicine","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"Parents","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"Experience","subitem_subject_language":"en","subitem_subject_scheme":"Other"}]},"item_language":{"attribute_name":"言語","attribute_value_mlt":[{"subitem_language":"jpn"}]},"item_resource_type":{"attribute_name":"資源タイプ","attribute_value_mlt":[{"resourcetype":"departmental bulletin paper","resourceuri":"http://purl.org/coar/resource_type/c_6501"}]},"item_title":"AYA世代を迎えた希少難病児を養育する親の移行期医療を巡る体験","item_titles":{"attribute_name":"タイトル","attribute_value_mlt":[{"subitem_title":"AYA世代を迎えた希少難病児を養育する親の移行期医療を巡る体験"},{"subitem_title":"Parents’ experiences of transition medicine for children of adolescent and young adult generation surviving childhood-onset rare disease","subitem_title_language":"en"}]},"item_type_id":"10002","owner":"5","path":["24"],"pubdate":{"attribute_name":"公開日","attribute_value":"2022-06-30"},"publish_date":"2022-06-30","publish_status":"0","recid":"124","relation_version_is_last":true,"title":["AYA世代を迎えた希少難病児を養育する親の移行期医療を巡る体験"],"weko_creator_id":"5","weko_shared_id":-1},"updated":"2023-06-19T08:02:40.528208+00:00"}