| Item type |
紀要論文 / Departmental Bulletin Paper(1) |
| 公開日 |
2020-11-24 |
| タイトル |
|
|
タイトル |
離島で暮らす遺伝性稀少難病児の養育の特徴と支援の検討 |
|
言語 |
ja |
| タイトル |
|
|
タイトル |
Particular features of care for children having hereditary rare disease by parents in isolated islands and discussion about the support required |
|
言語 |
en |
| 言語 |
|
|
言語 |
jpn |
| キーワード |
|
|
言語 |
en |
|
主題Scheme |
Other |
|
主題 |
isolated island |
| キーワード |
|
|
言語 |
en |
|
主題Scheme |
Other |
|
主題 |
hereditary rare disease |
| キーワード |
|
|
言語 |
en |
|
主題Scheme |
Other |
|
主題 |
care |
| キーワード |
|
|
言語 |
en |
|
主題Scheme |
Other |
|
主題 |
support |
| 資源タイプ |
|
|
資源タイプ識別子 |
http://purl.org/coar/resource_type/c_6501 |
|
資源タイプ |
departmental bulletin paper |
| ID登録 |
|
|
ID登録 |
10.34411/00000296 |
|
ID登録タイプ |
JaLC |
| 著者 |
久保, 恭子
河原, 智江
宍戸, 路佳
Kubo, Kyoko
Kawahara, Chie
Shishido, Mika
|
| 抄録 |
|
|
内容記述タイプ |
Abstract |
|
内容記述 |
[Purpose]This study aimed to fully understand the features of how the parents living in islands cared for their children with a hereditary rare disease, and clarify what support is necessary for them. [Results and Discussions]One of the important features of child care observed in the subject parents was that they gave priority to living together with families in the island over the life focused on medical care of the child with the hereditary rare disease. Those parents wanted the current public support to be reviewed for more flexible use in consideration of the particular regionality. Furthermore, the support necessary for them was to provide the medical and nursing care of the hereditary disease, and allow those parents to positively make use of the association for patients with the same disease. It was also necessary to understand the parents' way of thinking about the end-of-life care for their children. |
|
言語 |
en |
| 書誌情報 |
神奈川工科大学研究報告.A,人文社会科学編
巻 40,
p. 21-26,
発行日 2016-03-20
|
| 出版者 |
|
|
出版者 |
神奈川工科大学 |
| ISSN |
|
|
収録物識別子タイプ |
PISSN |
|
収録物識別子 |
21882878 |
| 書誌レコードID |
|
|
収録物識別子タイプ |
NCID |
|
収録物識別子 |
AA12669200 |
| フォーマット |
|
|
内容記述タイプ |
Other |
|
内容記述 |
application/pdf |
| 著者版フラグ |
|
|
出版タイプ |
VoR |
|
出版タイプResource |
http://purl.org/coar/version/c_970fb48d4fbd8a85 |
kka-040-003.pdf (828.2 kB)
