Epilepsy affects a larger number of individuals than previously thought-up to 2% of the population-and its effects reach further. Yet epilepsy, with its associated lingering stigma and fear, has remained in the background in terms of services and research. Traditional quantitative research often falls short when trying to describe the impact of epilepsy on the lives of individuals and their families. In the present study, focus groups were held throughout South Carolina to discuss individuals' experiences with accessing epilepsy-related services and health care, and what life with epilepsy is like. Following qualitative data analysis, findings included two themes. One theme focuses on the ongoing search for services and help. The second theme concerns the experiences of living life with epilepsy. Also highlighted are recommendations for potential improvements in public awareness and professional training, and helpful interventions.

译文

癫痫影响的个体数量比以前想象的要多-达到2% 的人口-其影响进一步扩大。然而,癫痫,伴随着挥之不去的耻辱和恐惧,在服务和研究方面仍然是背景。在试图描述癫痫对个人及其家庭生活的影响时,传统的定量研究往往不足。在本研究中,在南卡罗来纳州举行了焦点小组讨论个人获得与癫痫相关的服务和医疗保健的经验,以及癫痫的生活是什么样的。在定性数据分析之后,调查结果包括两个主题。一个主题侧重于正在进行的服务和帮助搜索。第二个主题涉及癫痫生活的经历。还强调了有关提高公众意识和专业培训以及有益干预措施的建议。

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