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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| Co-Investigator(Kenkyū-buntansha) |
岩江 荘介 宮崎大学, 医学部, 准教授 (80569228)
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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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| Project Status |
Completed (Fiscal Year 2016)
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| Budget Amount *help |
¥3,510,000 (Direct Cost: ¥2,700,000、Indirect Cost: ¥810,000)
Fiscal Year 2016: ¥910,000 (Direct Cost: ¥700,000、Indirect Cost: ¥210,000)
Fiscal Year 2015: ¥1,430,000 (Direct Cost: ¥1,100,000、Indirect Cost: ¥330,000)
Fiscal Year 2014: ¥1,170,000 (Direct Cost: ¥900,000、Indirect Cost: ¥270,000)
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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 / 社会的宙づり状態 / 難病患者支援 / 社会的認知 / 難病対策 / インタビュー / 難病 |
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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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Report
(4 results)
Research Products
(11 results)
