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中国癫痫患者的污名化:卫生专业人员、教师、雇主和社区领袖的观点。

Stigma of people with epilepsy in China: views of health professionals, teachers, employers, and community leaders.

机构信息

Institute of Population Research, Peking University, Beijing, China.

出版信息

Epilepsy Behav. 2011 Jul;21(3):261-6. doi: 10.1016/j.yebeh.2011.04.001. Epub 2011 May 24.

Abstract

To identify possible sources of stigma of epilepsy in key informant groups, "mini-ethnographic" studies were conducted in rural and urban locations in China. Data collected from 45 semistructured interviews and 8 focus group discussions (6 persons each) were analyzed to investigate the world experienced by people with epilepsy. Underpinned by a social constructionist approach to data analysis, emerging themes were identified with the use of computer-assisted data analysis (NVivo 8). A hierarchical model was then constructed, to include practical level issues (attitudes toward risk, attitudes toward costs of epilepsy) and cultural level issues (contrast between rurality and tradition and urbanization and modernity in the Chinese context). The analysis enriches current research on factors and sources of stigma of epilepsy and highlights issues for future practice.

摘要

为了确定癫痫耻辱感的可能来源,在农村和城市地区进行了“小型民族志”研究。从 45 次半结构化访谈和 8 次焦点小组讨论(每次 6 人)中收集的数据进行了分析,以调查癫痫患者的生活世界。在社会建构主义数据分析方法的支持下,使用计算机辅助数据分析(NVivo 8)确定了新出现的主题。然后构建了一个分层模型,包括实际层面的问题(对风险的态度、对癫痫成本的态度)和文化层面的问题(中国语境下的农村和传统与城市化和现代性之间的对比)。该分析丰富了当前关于癫痫耻辱感的因素和来源的研究,并强调了未来实践中的问题。

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Stigma and epilepsy: the Chinese perspective.污名化与癫痫:中国视角。
Epilepsy Behav. 2010 Feb;17(2):242-5. doi: 10.1016/j.yebeh.2009.12.015. Epub 2010 Jan 25.
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Determinants of quality of life in people with epilepsy.癫痫患者生活质量的决定因素。
Neurol Clin. 2009 Nov;27(4):843-863. doi: 10.1016/j.ncl.2009.06.003.
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Epilepsy and stigma: an update and critical review.癫痫与污名化:最新情况及批判性综述
Curr Neurol Neurosci Rep. 2008 Jul;8(4):339-44. doi: 10.1007/s11910-008-0052-8.
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Social stigma for adults and children with epilepsy.癫痫成人和儿童所面临的社会耻辱感。
Epilepsia. 2007;48 Suppl 9:6-9. doi: 10.1111/j.1528-1167.2007.01391.x.

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