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The Terminal Phase of an Intractable Neurological Disease from the Viewpoint of Nursing Care: The Importance of the Promotion of a Barrier-Free Mind for ALS Care Koko Muraoka 1 1Department of Adult Health Nursing, Faculty of Nursing, Toho University Keyword: 筋萎縮性側索硬化症 , 主体的選択 , 家族介護者 , 心のバリアフリー , 終末期 , amyotrophic lateral sclerosis , voluntary choice , family caregiver , barrier-free mind , terminal phase pp.1025-1034
Published Date 2015/8/1
DOI https://doi.org/10.11477/mf.1416200249
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Abstract

Amyotrophic lateral sclerosis (ALS) is a particularly serious intractable neurological disease. Patients with ALS have high mortality rates if they are not put on an artificial respirator. Even with an artificial respirator, individuals with ALS are forced to witness their own physical deterioration. Because 24 hour care is usually required, an intense relationship ofter develops between patients with ALS and family caregivers. This relationship forms an invisible barrier and can impede a smooth introduction of external services. As a result, there can be a degradation in the quality of care. The purpose of this paper is to describe the voluntary efforts of patients and family caregivers in order to break down this barrier and to discuss what types of care support are available to promote barrier-free minds.


Copyright © 2015, Igaku-Shoin Ltd. All rights reserved.

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電子版ISSN 1344-8129 印刷版ISSN 1881-6096 医学書院

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