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希腊一家独特麻风病临终关怀院患者的经历:一项诠释现象学分析。

Experiences of Patients Living in a Unique Leprosy Hospice in Greece: An Interpretative Phenomenological Analysis.

作者信息

Nikoloudi Maria, Bogdani Evaggelia, Tsatsou Ioanna, Mantoudi Alexandra, Mystakidou Kyriaki

机构信息

Pain Relief and Palliative Care Unit, Radiology Department, School of Medicine, Aretaieion University Hospital, National and Kapodistrian University of Athens, Athens, GRC.

People with Special Needs Department, Centre of Social Welfare of Attika, Athens, GRC.

出版信息

Cureus. 2024 Aug 7;16(8):e66358. doi: 10.7759/cureus.66358. eCollection 2024 Aug.

Abstract

BACKGROUND

Hansen's disease, or leprosy, has a long-standing presence in human history, and our study uniquely delves into the experiences of individuals who are among the last survivors of this condition in Greece. During the early 1930s, patients with Hansen's disease from Spinalonga, an isolated location in Crete, were moved to a medical facility in Athens. This event represents a significant historical change in the management and treatment of the disease. Following Spinalonga's closure, a Sanatorium emerged, evolving into Greece's sole Hansen's disease center and the present-day refuge for patients, underscoring the enduring stigma and abandonment associated with the disease.

METHOD

Our study, conducted through six interviews with unstructured schedules, provides a unique opportunity for these individuals to share personal insights, offering a profound understanding of their interpretations and experiences.

RESULTS

Through interpretative phenomenological analysis, we unearthed four superordinate themes: the pivotal nature of the diagnosis, the visible impact of the disease on the body, the stigma associated with leprosy and its effects on individuals, and the significance of 'home' as a place of solace and acceptance.

CONCLUSIONS

These themes collectively depict the deep emotional trauma experienced by the participants, shedding light on the enduring impact of historical stressors, confinement practices, and the challenges of living with a devalued identity, shaping their profound sense of self.

摘要

背景

麻风病在人类历史中由来已久,我们的研究特别深入探讨了希腊最后一批麻风病幸存者的经历。20世纪30年代初,来自克里特岛偏远地区斯皮纳龙格的麻风病患者被转移到雅典的一家医疗机构。这一事件代表了该疾病管理和治疗方面的重大历史变革。斯皮纳龙格关闭后,一家疗养院应运而生,逐渐发展成为希腊唯一的麻风病中心以及如今患者的庇护所,凸显了与该疾病相关的持久耻辱感和被遗弃感。

方法

我们的研究通过六次非结构化访谈进行,为这些个体提供了一个独特的机会来分享个人见解,从而深入了解他们的解读和经历。

结果

通过解释现象学分析,我们挖掘出四个上位主题:诊断的关键性质、疾病对身体的明显影响、与麻风病相关的耻辱感及其对个人的影响,以及“家”作为慰藉和接纳之地的重要性。

结论

这些主题共同描绘了参与者所经历的深刻情感创伤,揭示了历史压力源、隔离措施以及带着被贬低身份生活的挑战所产生的持久影响,塑造了他们深刻的自我认知。

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本文引用的文献

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Towards zero leprosy: Dream or vision?迈向零麻风病:梦想还是愿景?
Indian J Med Res. 2021 Apr;153(4):401-403. doi: 10.4103/ijmr.IJMR_304_21.
7
A comprehensive research agenda for zero leprosy.消除麻风病的综合研究议程。
Infect Dis Poverty. 2020 Nov 12;9(1):156. doi: 10.1186/s40249-020-00774-4.
10
[Leper's island: Spinalonga].[麻风病人岛:斯皮纳龙格岛]
Presse Med. 2013 Nov;42(11):1526-9. doi: 10.1016/j.lpm.2012.11.024. Epub 2013 May 10.

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