2021 Fiscal Year Final Research Report
Structuring of experience of the parents who bring up severe motor and Intellectual disabilities make a shared decision-making.
| Project/Area Number |
19K11023
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Multi-year Fund |
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| Section | 一般 |
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| Review Section |
Basic Section 58070:Lifelong developmental nursing-related
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| Research Institution | Konan Women's University |
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Principal Investigator |
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| Co-Investigator(Kenkyū-buntansha) |
村上 靖彦 大阪大学, 人間科学研究科, 教授 (30328679)
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| Project Period (FY) |
2019-04-01 – 2022-03-31
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| Keywords | 医療的ケア児 / 代理意思決定支援 / 医療倫理 / 障がい児（者）観 |
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| Outline of Final Research Achievements |
What greatly affects the post-decision psychological state of the mothers who are responsible for their children's surrogate decision-making is the degree to which their children can live peacefully with the medical devices and disabilities brought about by their mothers' decisions. For example, a tracheotomy allows the child to "breathe easier," or PEG is added, which "eliminates the pain of inserting a tube through the nose. On the other hand, mothers' lack of understanding of their children, such as "he/she can't go to school" and "they don't care about my child," greatly lengthened their worries after their surrogate decision-making.The interviews with the mothers made us realize that the value of "with disability," which has been discussed in various fields for many years, is still strongly negative in society. The interviews also suggested the need for the medical field, which is often the first place of encounter, to be proactive in changing the values of disability.
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| Free Research Field |
臨床看護学
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| Academic Significance and Societal Importance of the Research Achievements |
代理意思決定後は、医療や障害支援の緊急性からこどもの支援に関心が向けれることが多いが、本研究によって意思決定後の親たちにも支援が必要であることが明らかとなった。また、母親たちの率直な言葉の数々によって，改めて当事者に即した支援方法を支援者たちが知る必要性が社会に提示された．同時に，現象学的的なアプローチは協力者たちに語ることを後押しする力があることが示唆された。支援者が聞きたいことを聞くのではなく，当事者たちが語りたいことを語ること，その語りの背景までをも描き出すことを目指すこのアプローチは、特に障害者差別という強固な社会構造を捉えていくことに適しているだろう．
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