{"created":"2023-05-18T09:55:32.483817+00:00","id":978,"links":{},"metadata":{"_buckets":{"deposit":"e56544e4-df3e-487f-8912-0971a58784d0"},"_deposit":{"created_by":4,"id":"978","owners":[4],"pid":{"revision_id":0,"type":"depid","value":"978"},"status":"published"},"_oai":{"id":"oai:jwcpe.repo.nii.ac.jp:00000978","sets":["6:59:107"]},"author_link":["6742","6741","6743"],"item_3_biblio_info_8":{"attribute_name":"書誌情報","attribute_value_mlt":[{"bibliographicIssueDates":{"bibliographicIssueDate":"2018-03","bibliographicIssueDateType":"Issued"},"bibliographicPageEnd":"59","bibliographicPageStart":"47","bibliographicVolumeNumber":"48","bibliographic_titles":[{"bibliographic_title":"日本女子体育大学紀要"}]}]},"item_3_description_42":{"attribute_name":"資源タイプ","attribute_value_mlt":[{"subitem_description":"Bulletin","subitem_description_type":"Other"}]},"item_3_description_5":{"attribute_name":"抄録","attribute_value_mlt":[{"subitem_description":"Providing “bathing care” to children with type 1 spinal muscular atrophy (SMA1) who have a severe disability that requires the use of an artificial respirator inserted by tracheostomy, and with lifelong dysfunction of the neck muscles preventing them from holding up their own neck, is extremely challenging. To date, almost no reports have been published on the actual situation of habitually bathing in the homes of children fitted with artificial respirators. In light of this paucity of information, a concerned caregiver of a child with SMA1 took it upon herself to research and publish findings of a survey she conducted as a type of “concerned party research”. We examined the open-ended answers to questions in this survey, and in this paper shed light on the specific facts of habitually bathing and the thoughts of families who successfully overcome the challenge of bathing children with SMA1 every day.\n　Of the 44 people surveyed, more than 90% (40 people) bathed their child with SMA1 at least three times a week at home and half (22 people) managed to bathe their child every day. Bathing of children with SMA1 is extremely individualized and becomes increasingly difficult as the child grows. However, families and the people around them have been bathing their children using their own creative solutions. Families may struggle with bathing care, but feel joy from watching their child enjoy bathing and perceive the diverse merits of bathing that go beyond simple cleaning of the body. Families' strong desire to “allow their child to take a bath every day as normal” was found to be the motivation behind successfully achieving difficult daily bathing. It is crucial that information on the creative solutions accumulated by each family is shared, that cooperation between families and professionals is established. Furthermore, “concerned party research” conducted mainly by the parties should also become a future trend in enhancing the quality of research.","subitem_description_type":"Abstract"}]},"item_3_identifier_registration":{"attribute_name":"ID登録","attribute_value_mlt":[{"subitem_identifier_reg_text":"10.34349/00000972","subitem_identifier_reg_type":"JaLC"}]},"item_3_publisher_35":{"attribute_name":"出版者","attribute_value_mlt":[{"subitem_publisher":"日本女子体育大学"}]},"item_3_source_id_11":{"attribute_name":"書誌レコードID","attribute_value_mlt":[{"subitem_source_identifier":"AN00192838","subitem_source_identifier_type":"NCID"}]},"item_3_source_id_9":{"attribute_name":"ISSN","attribute_value_mlt":[{"subitem_source_identifier":"02850095","subitem_source_identifier_type":"ISSN"}]},"item_3_textarea_4":{"attribute_name":"著者所属","attribute_value_mlt":[{"subitem_textarea_value":"日本女子体育大学（教授）"}]},"item_3_version_type_18":{"attribute_name":"著者版フラグ","attribute_value_mlt":[{"subitem_version_resource":"http://purl.org/coar/version/c_970fb48d4fbd8a85","subitem_version_type":"VoR"}]},"item_creator":{"attribute_name":"著者","attribute_type":"creator","attribute_value_mlt":[{"creatorNames":[{"creatorName":"雨宮, 由紀枝"}],"nameIdentifiers":[{}]},{"creatorNames":[{"creatorName":"Amemiya, Yukie","creatorNameLang":"en"}],"nameIdentifiers":[{}]}]},"item_files":{"attribute_name":"ファイル情報","attribute_type":"file","attribute_value_mlt":[{"accessrole":"open_date","date":[{"dateType":"Available","dateValue":"2019-08-21"}],"displaytype":"detail","filename":"nichijo_kiyo48-06.pdf","filesize":[{"value":"594.3 kB"}],"format":"application/pdf","licensetype":"license_note","mimetype":"application/pdf","url":{"label":"nichijo_kiyo48-06.pdf","url":"https://jwcpe.repo.nii.ac.jp/record/978/files/nichijo_kiyo48-06.pdf"},"version_id":"5b17ac89-6463-4be4-a0ae-492385876add"}]},"item_keyword":{"attribute_name":"キーワード","attribute_value_mlt":[{"subitem_subject":"type 1 spinal muscular atrophy (SMA1)","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"child","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"artificial respirators","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"bathing care","subitem_subject_language":"en","subitem_subject_scheme":"Other"},{"subitem_subject":"concerned party research","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":"人工呼吸器を使用するSMAⅠ型児の在宅での入浴習慣を実現する家族の思い : 当事者研究だからこそ，深まり，広がる","item_titles":{"attribute_name":"タイトル","attribute_value_mlt":[{"subitem_title":"人工呼吸器を使用するSMAⅠ型児の在宅での入浴習慣を実現する家族の思い : 当事者研究だからこそ，深まり，広がる"},{"subitem_title":"Thoughts of families who succeed in habitually bathing children with type 1 SMA fitted with artificial respirators : Concerned party research deepens and expands understanding"}]},"item_type_id":"3","owner":"4","path":["107"],"pubdate":{"attribute_name":"PubDate","attribute_value":"2018-04-11"},"publish_date":"2018-04-11","publish_status":"0","recid":"978","relation_version_is_last":true,"title":["人工呼吸器を使用するSMAⅠ型児の在宅での入浴習慣を実現する家族の思い : 当事者研究だからこそ，深まり，広がる"],"weko_creator_id":"4","weko_shared_id":-1},"updated":"2023-07-05T08:57:28.357652+00:00"}