Studies on the Illness Experience of Hansen's disease Sufferers

本研究采用生活史访谈法，考察了两类汉森病患者的生活世界，一类是麻风病住院患者，另一类是麻风防治法(1907-96)禁止居住在麻风外的既往患者，在积极访谈的基础上描述了患者主观意义的视野。由于这种疾病造成的耻辱，患者的生活一直很痛苦。他们不得不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。)即使是在麻风病，他们也与家人断绝了联系。生活本身的经历对他们来说只是一种创伤。此外，诉讼中原告和非原告之间的纠正冲突也很激烈。所有患者均获得良好效果，均获合法救治。然而，在采访中，我面临着在这样的情况下定位自己的困难：这是故事的正确方式吗？我特别强调了导致患者积极生活的叙事的意义。这一观点有力地解释了话语空间对患者融入研究者自身的疾病体验的意义。第五章从行动信息的角度考察了个人的疾病体验与政策历史以及患者的疾病体验之间的关系。

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.