2016 Fiscal Year Final Research Report
Interview survey of rare disease patients on their illness experience and life problems
| Project/Area Number |
26590090
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| Research Category |
Grant-in-Aid for Challenging Exploratory Research
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| Allocation Type | Multi-year Fund |
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| Research Field |
Sociology
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| Research Institution | Osaka University |
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Principal Investigator |
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| Research Collaborator |
KATORI Hisayuki 特定非営利活動法人 希少難病ネットつながる, 理事長
NOJIMA Natsuko 東京大学, 日本学術振興会, 特別研究員
HIGUCHI Mari 大阪大学, 人間科学研究科, 助教
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| Project Period (FY) |
2014-04-01 – 2017-03-31
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| Keywords | 希少疾患 / 病の語り / 宙づり状態 / インタビュー調査 |
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| Outline of Final Research Achievements |
We have interviewed on 53 rare disease or rare symptom cases with patients and their family members (25 cases were covered by national policy for intractable diseases, 20 cases were not covered when interviewed, 8 cases were not yet diagnosed). Based on 40 cases among them we have drawn up an interim report on 11 core issues rare disease patients face in their illness experiences. The report was sent to the participants and the general summary was published on the website of our partner support group (RDneT). The analysis of the data revealed the patients' "social liminality" in various situation such as workplace, school, public policy or family life. We reported this finding at national and overseas academic conferences. As to the issue of work and employment of the patients which constitutes the core issue of their social liminality we invited several stakeholders on this problem and exchange with them the information and opinions.
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| Free Research Field |
医療社会学
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