城市社区癫痫患者羞耻感的定性研究

Stigma of patients with epilepsy in an urban community:Causes,mechanism,and effect

目的:了解市区癫痫患者羞耻感的产生原因,分析羞耻感产生的机制及其对癫痫患者的影响,为以后实施干预研究提供科学依据和理论基础。方法:选取由社区医生推荐在北京崇文区生活5年以上,而且经过明确临床诊断的癫痫患者24名,采用面对面访谈的方法,由经过统一培训的研究人员采用开放式的访谈提纲对被采访者进行深入的个体访谈。结果:24位患者中有1/3的患者提到公众对癫痫病存在错误认识,18～50岁的患者中只有30%的人有正式工作,婚姻质量差是已婚癫痫患者的主要问题,约90%的访谈对象提到了经济压力是其生活面临的主要问题。隐瞒和保密、担心发作、精神和性格的改变是羞耻感影响的结果。结论:羞耻感是癫痫患者社会心理问题的重要方面。应加强癫痫患者羞耻感的干预研究,减少癫痫患者羞耻感的产生,提高癫痫患者的自信心和社会价值。

Objective： To investigate the causes, mechanism and effect of stigma of patient with epilepsy in urban Beijing. Method. Twenty-four patients, who lived in Beijing for at least 5 years were screened by community doctor and included in the study. The trained researchers interviewed with patients face to face. The interview format used open-ended questions to encourage extended responses. Results： Most of the patients suffered more or less stigma. One third of patients mentioned that the public had a wrong recognition of epilepsy. Only 30% of patients （ 18 50 years）had a job. Bad quality of marriage was the main problem in married patient with epilepsy. Almost 90% of patients considered that economic pressure was their main difficulty. Concealment and secrecy, worry about unpro- voked seizure, and changes of psychology and personality were the effect of stigma on the patients. Conclusion： The effect of treatment and quality of life of patient with epilepsy have been impacted seriously due to neglecting by society and the public for a long time. To reducing the stigma of patients with epilepsy, education and intervention study should be strengthened, so serf-confidence and social values of patients with epilepsy could be raised.