2002 Fiscal Year Final Research Report Summary
Studies on the Illness Experience of Hansen's disease Sufferers
| Project/Area Number |
12610227
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| Research Category |
Grant-in-Aid for Scientific Research (C)
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| Allocation Type | Single-year Grants |
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| Section | 一般 |
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| Research Field |
社会学(含社会福祉関係)
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| Research Institution | Kenmei Women's Junior College |
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Principal Investigator |
ARARAGI Yukiko Kenmei Women's Junior College, Department of Home Economics, Associate professor, 生活学科, 助教授 (50268827)
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| Project Period (FY) |
2000 – 2002
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| Keywords | Hansen's disease sufferers / illness experience / leprosarium / subjective meaning / life history / active interview / positionality / field research |
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| Research Abstract |
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.
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