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墨西哥癫痫患者的污名体验和卫生保健提供者的看法。

Stigma experience of people with epilepsy in Mexico and views of health care providers.

机构信息

Neuropsychiatry Unit, National Institute of Neurology and Neurosurgery, Mexico City, Mexico; Social Research Department, National Institute of Neurology and Neurosurgery, Mexico City, Mexico.

Neuropsychiatry Unit, National Institute of Neurology and Neurosurgery, Mexico City, Mexico.

出版信息

Epilepsy Behav. 2014 Mar;32:162-9. doi: 10.1016/j.yebeh.2013.12.007. Epub 2014 Jan 16.

Abstract

Epilepsy is a neurological disorder with neurobiological, cognitive, psychological, and social consequences. Epilepsy stigma is a social determinant of ill health that affects the quality of life of people who suffer from epilepsy and that renders a poor social prognosis even worse than the clinical one. From a phenomenological approach, between January and July 2011, we explored the experience of epilepsy stigma through 25 in-depth qualitative interviews with 10 persons with temporal lobe epilepsy (PWE) (we avoided terms such as "epileptics" or "epileptic patients" because they can be labeling and stigmatizing), 10 carers (CEs) of PWE who attended the epilepsy clinic of the Institute of Neurology and Neurosurgery of Mexico, and 5 physicians specialized in epilepsy. The objective of the study was to identify the following: perceptions that could indicate any form of discrimination due to having epilepsy, reactions of people in front of a person having seizures, and social functioning of PWE since epilepsy onset, particularly their interpersonal relationships and participation in educational or working activities. Through the health providers' narratives, we explored the mainstream care practices, their perspectives on epilepsy, and their views about how the disease should be addressed. Thematic guidelines were elaborated for each type of participant. All information was processed with the use of the computer-assisted data analysis, Atlas.ti5. We made a codification of broad themes that corresponded to the main topics of the interview guidelines and then proceeded to finer categorization to elaborate the analytical categories. Epilepsy was attached to a powerful stereotype that includes notions of contamination, danger, sin, divine punishment, supernatural forces, and madness. Internalized, interpersonal, and institutional stigma prevents PWE from participating in school and employment and reduces their opportunities to establish peer and couple relationships. Mexican's overt impunity of structural discrimination towards PWE shows a lack of available legal resources that protect their human rights. The narrow biomedical concept that physicians have of epilepsy is consistent with the limited medical practices that are offered to treat epilepsy at the health services in Mexico. Comprehensive treatment and integrated services for epilepsy must incorporate psychosocial programs that include epilepsy stigma as a major component of the disease.

摘要

癫痫是一种具有神经生物学、认知、心理和社会后果的神经障碍。癫痫污名是影响癫痫患者生活质量的一个社会决定因素,使社会预后恶化,甚至比临床预后更差。从现象学的角度出发,2011 年 1 月至 7 月,我们通过对 10 名颞叶癫痫患者(我们避免使用“癫痫患者”或“癫痫患者”等术语,因为这些术语可能具有标签和污名化的作用)、10 名参加墨西哥神经病学和神经外科学院癫痫诊所的患者照顾者(CEs)和 5 名专门研究癫痫的医生进行了 25 次深入的定性访谈,探讨了癫痫污名的体验。研究的目的是确定以下几点:由于患有癫痫而可能产生的任何形式的歧视的看法、人们面对癫痫发作时的反应以及癫痫患者发病后的社会功能,特别是他们的人际关系和参与教育或工作活动的情况。通过卫生保健提供者的叙述,我们探讨了主流护理实践、他们对癫痫的看法以及他们对如何治疗这种疾病的看法。为每种类型的参与者制定了主题指南。使用计算机辅助数据分析 Atlas.ti5 对所有信息进行了处理。我们对广泛的主题进行了编码,这些主题对应于访谈指南的主要主题,然后进行更精细的分类,以详细阐述分析类别。癫痫与一种强大的刻板印象联系在一起,其中包括污染、危险、罪恶、神圣惩罚、超自然力量和疯狂的概念。内隐的、人际的和制度的污名将癫痫患者排除在学校和就业之外,减少了他们建立同龄人和伴侣关系的机会。墨西哥人对癫痫患者公然的结构性歧视表明缺乏可用的法律资源来保护他们的人权。医生对癫痫的狭隘生物医学概念与墨西哥卫生服务机构提供的治疗癫痫的有限医疗实践一致。癫痫的综合治疗和综合服务必须纳入社会心理方案,将癫痫污名作为疾病的一个主要组成部分。

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