Studies on the Illness Experience of Hansen's disease Sufferers

本研究采用生活史访谈法，考察了麻风病院的住院病人和麻风病院外的麻风病康复者这两类汉森病患者的生活世界，描述了患者的主观意义视野。由于这种疾病带来的耻辱，患者的生活一直很痛苦。他们必须对自己的医疗记录保密，甚至对他们的伴侣和邻居也是如此。因此，他们中的一些人有一个别名（在本文中，你会发现一个女人有六个别名。）甚至在麻风病院，他们与家人断绝了联系。生活本身的经历对他们来说只是一种创伤。诉讼中原告与非原告之间的赔偿冲突也很坚韧。所有患者均得到了良好的治疗效果，并得到了合法的救治。然而，在这样的情况下，我在采访中遇到了定位自己的困难：这是故事发展的正确方式吗？我特别强调了叙事对受难者积极生活的意义。这一观点有力地说明了话语空间的重要性，即把患者融入研究者自身的“疾病体验”中。第六章从在用信息的角度分析了患者的疾病体验。

In this study, I examined the life-world of two kinds of sufferers of Hansen's disease hy life-history interviewing, one is the inmate of leprosaria and the other is the ex-patients living outside leprosaria in spite of prohibition by the Leprosy Prevention Law (1907-96).I described the sufferers' horizons of subjective meaning based on the active interviews. The lives of sufferers have been painful because of the stigma put on due to the disease. They have to keep their medical records secret even to their partners and the neighbors. Some of them, therefore, had an alias ( in this paper you will find a woman with six aliases. ) even in leprosaria and they disconnected from their families. The experience of living itself was just a trauma for them. And also the conflict for redressing was tough between plaintiffs and non-plaintiffs in the suit. All the sufferers got the good result and were saved legally. However, I was confronted by the difficulty to position myself during the interviews in the situation like this: Is this the proper way the story goes?I laid special emphasis on the meaning of the narration leading to the positive life for the sufferers. This point of view proves to be powerful in accounting for the significance of the space of discourse to integrate the sufferer into 'the illness experience' featuring the researcher itself.Also I examined the relationship between illness experience of individuals and the history of policy in chap. 5 and the illness experience of sufferers from the viewpoint of the information-in-act in chap.6.