2022 Fiscal Year Final Research Report

Research on support systems for people with progressive neurological incurable diseases with a view to end of life.

Research Project

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Project/Area Number	18K10364
Research Category	Grant-in-Aid for Scientific Research (C)
Allocation Type	Multi-year Fund
Section	一般
Review Section	Basic Section 58060:Clinical nursing-related
Research Institution	Juntendo University
Principal Investigator	Nagase Masako 順天堂大学, 医療看護学部, 先任准教授 (90338765)
Co-Investigator(Kenkyū-buntansha)	漆戸由紀子順天堂大学, 大学院医療看護学研究科, 助教 (60858504) 瀬尾昌枝順天堂大学, 医療看護学部, 助教 (70613272) 村岡宏子順天堂大学, 医療看護学研究科, 教授 (60258978)
Project Period (FY)	2018-04-01 – 2023-03-31
Keywords	神経難病 / 意思決定支援 / エンドオブライフ / 看護ケア
Outline of Final Research Achievements	The aim of this study was to elucidate the palliative care needs of people with advanced neurological incurable diseases with a view to the end of life, to identify issues in treatment choice and to present what support systems are needed. A combined web-based and questionnaire-based surveillance and interview survey was conducted in Japan, focusing on continuity and comprehensiveness of care for patients and families with progressive neurological incurable disease. In the interview survey, patients were asked to describe their thoughts on their treatment choices, and the process that led to them being fitted with a ventilator and their expectations of their care were analysed. Questionnaires were also used to determine the relationship between symptom progression and continuity of work.
Free Research Field	慢性看護、保健医療社会学
Academic Significance and Societal Importance of the Research Achievements	本研究の結果から、これまで自明とされてきた診療科間の連携や施設間の連携、一人の難病療養者を支える保健・医療・福祉のネットワークが、実際には療養者自身が繋いでいる実態が明らかになった。療養者は、自身の「死」と向き合う、あるいは「いのち」と向き合うことで、受ける治療を選択している。この様相は厚生労働省が進めているアドバンスケアプランニング「人生会議」とは明らかに異なっている。神経難病は希少疾患であり、その症状や病気の状況には個人差があることから、当事者を中心としたシステム構築という発想が有効な支援システムとなりうると考えられた。この視座は、ダイバーシティ、社会的包含を推進するものである。