筋ジストロフィー病棟の歴史的変遷: 筋ジストロフィー病棟での療養をめぐる研究の方向を探る

摘要

わが国には，他国にはない，筋ジストロフィー患者の救済措置として作られた「筋ジストロフィー （progressivemusculardystrophy，以下PMDとする）病棟」がある．ここは，これまで55年間にわたって，身体の可動性を進行性に障害していく患者の療養の場となってきた．ここでは大多数の患者が政策医療を受け，生涯にわたる療養をしている．PMD病棟では他の一般的な病棟とは異なり，必ずしも「退院」を前提にしない医療や生活が営まれている．%This article surveys past studies of and reports on the treatment in Progressive Muscular Dystrophy (PMD) wards. The Japanese government has taken special measures to deal with the treatment of PMD, establishing the first national PMD wards in 1964, when no equivalent facilities for patients with other Special Chronic Diseases (tokutei shikkan) existed. PMD wards generally offered patients safe environments in which they could seek their own way of life, but some found the environments stressful and had many complaints about them. For the nurses, on the other hand, the wards served as places to practice what they enjoy the fruits of their efforts, but many actually found it difficult and hard to work there. In each ward, pragmatic measures have been taken to deal with obvious problems depending on the circumstances, and past studies have shown various issues many-sided with the treatment in PMD wards. It seems, however, that researchers are treating each problem as a mere scientific object of study, directing our attention from the reality of the treatment in PMD wards. This article argues the necessity of describing the actual experiences of people who participate in the treatment in PMD wards and provide an opportunity to reexamine "what the treatment in PMD wards is like. "