Université de Limoges, IFR 145 GEIST, Institut de Neurologie Tropicale, EA 3174 NeuroEpidémiologie Tropicale et Comparée, Limoges, France.
Epilepsia. 2010 Jun;51(6):1061-8. doi: 10.1111/j.1528-1167.2009.02511.x. Epub 2010 Feb 3.
Stigma is a major burden of epilepsy. In sub-Saharan Africa the few studies that addressed epilepsy stigma emphasize enacted, rather than perceived, stigma. This inattention may compromise clinical management and delay help seeking, thereby contributing to the treatment gap. We assessed perceived stigma and identified sociocultural and psychological factors explaining greater stigma among people with epilepsy (PWE) in Benin.
PWE included in this study were ascertained using a door-to-door survey in the general population in a Beninese rural area. We applied both qualitative and quantitative research methods to assess stigma and patient's experience and beliefs. An Explanatory Model Interview Catalogue (EMIC) and verbally administered questionnaires provided data for demographic, clinical, and sociocultural features. Sociocultural features were evaluated in terms of illness-related experience and sociocultural representations of epilepsy. Depression and anxiety were also screened.
Eighty PWE were included. About 68.7% reported feeling stigmatized. Multivariate regression revealed that factors independently associated with perceived stigma were experience of social isolation (p < 0.001), experience of marital problems (p < 0.01), and presence of anxiety disorder (p < 0.01).
Perceived stigma is an important issue in epilepsy in Benin. Social factors seem to be more influential than sociocultural representation of epilepsy. Insofar as research is needed in other African countries to determine the nature and relevant features of stigma to improve treatment and control.
耻辱感是癫痫患者的主要负担。在撒哈拉以南非洲，少数研究关注的是癫痫耻辱感，强调的是实施的耻辱感，而不是感知到的耻辱感。这种关注的缺乏可能会影响临床管理，并延迟寻求帮助，从而导致治疗差距。我们评估了感知到的耻辱感，并确定了社会文化和心理因素，这些因素可以解释贝宁癫痫患者（PWE）的耻辱感更大。
本研究中纳入的癫痫患者是通过在贝宁农村地区进行的一项逐户调查确定的。我们采用定性和定量研究方法来评估耻辱感和患者的经验和信念。解释模型访谈目录（EMIC）和口头管理问卷提供了人口统计学、临床和社会文化特征的数据。社会文化特征是根据与疾病相关的经验和对癫痫的社会文化表现来评估的。还筛查了抑郁和焦虑。
共纳入 80 名癫痫患者。约 68.7%的患者报告感到受到歧视。多变量回归显示，与感知耻辱感独立相关的因素是社会孤立的经历（p < 0.001）、婚姻问题的经历（p < 0.01）和焦虑障碍的存在（p < 0.01）。
在贝宁，癫痫患者的感知耻辱感是一个重要问题。社会因素似乎比癫痫的社会文化表现更有影响力。鉴于需要在其他非洲国家进行研究，以确定耻辱感的性质和相关特征，以改善治疗和控制。
