Structuring of experience of the parents who bring up severe motor and Intellectual disabilities make a shared decision-making.

Research Project

Project/Area Number	19K11023
Research Category	Grant-in-Aid for Scientific Research (C)
Allocation Type	Multi-year Fund
Section	一般
Review Section	Basic Section 58070:Lifelong developmental nursing-related
Research Institution	Konan Women's University
Principal Investigator	Tanaka MasamiMasami 甲南女子大学, 看護リハビリテーション学部, 助教 (60835776)
Co-Investigator(Kenkyū-buntansha)	村上靖彦大阪大学, 人間科学研究科, 教授 (30328679)
Project Period (FY)	2019-04-01 – 2022-03-31
Project Status	Completed (Fiscal Year 2021)
Budget Amount *help	¥2,080,000 (Direct Cost: ¥1,600,000、Indirect Cost: ¥480,000) Fiscal Year 2021: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000) Fiscal Year 2020: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000) Fiscal Year 2019: ¥390,000 (Direct Cost: ¥300,000、Indirect Cost: ¥90,000)
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 / 代理意思決定 / 現象学的アプローチ / 親 / 重症心身障害児 / 母親支援 / 最善の利益 / 親支援
Outline of Research at the Start	本研究の目的は、医療依存度が高く、自らの意思を検討し表明することが困難な子どもたちの医療を導入した後に、代理意思決定の中心的役割を担い、かつその医療を含めた子どもの世話や責任を一生背負う親たちの経験を明らかにすることにある。
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.
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．