進行性筋萎縮症成人患者の生活支援に関する一研究
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概要
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The purpose of this research is to clarify the needs of living among adult patients with Progressive Muscular Atrophy (PMA) and to consider the proper support to meet their needs. Six individuals with PMA were chosen as subjects for the case study. I interviewed the subjects individually,investigating mainly their knowledge of PMA, age of becoming sick and the present conditions of their daily life, occupational life and leisure life within their life history.The following points were found to be important; 1) Advancing the understanding of adult patients with PMA among supporters. 2) Improving the environment of facilities and institutions by adopting the ideas of the parties concerned. 3) Trying to revise laws and regulations in consideration of the characteristics of PMA. In the present condition, understanding and knowledge about the situation of those people is not nearly suficient. Above all, it is important that supporters (family, home helpers, volunteers and so on) who are concerned with them directly become persons of understanding and voices for them, and that they inform the society about their situation. Furthermore, it is necessary that adult patients with PMA work in society and deal with their problems by themselves. Continuing these efforts will raise their understanding and knowledge, as well as support situations in which it is easy for them to live. Though these efforts require steady effort, they will help these people lead more fulfilling lives than now, and will allow them to establish an independent and rich life.
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