Particular features of care for children having hereditary rare disease by parents in isolated islands and discussion about the support required
| Autor: | Kubo, Kyoko, Kawahara, Chie, Shishido, Mika |
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| Jazyk: | japonština |
| Rok vydání: | 2016 |
| Předmět: | |
| Zdroj: | 神奈川工科大学研究報告.A,人文社会科学編. 40:21-26 |
| ISSN: | 2188-2878 |
| Popis: | application/pdf [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. |
| Databáze: | OpenAIRE |
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