Department of Medical and Surgical Sciences and Advanced Technologies "G.F. Ingrassia", Section of Neurosciences, University of Catania, Catania, Italy.
Center of Anthropological Researches of the Teko Guaraní, Gutierrez, Bolivia.
Epilepsy Behav. 2019 Mar;92:90-97. doi: 10.1016/j.yebeh.2018.11.036. Epub 2019 Jan 8.
Epilepsy represents around 0.7% of the overall global burden of diseases and is particularly prevalent and associated with significant disability in low- and middle-income countries (LMIC) in Latin American Countries (LAC). A community-based epilepsy awareness program was carried out by our group in the rural areas of the Chaco region, Plurinational state of Bolivia, to improve the knowledge about epilepsy, with a first part directed toward general practitioners and a second part toward nurses and community health workers (CHWs) of the rural communities with a positive outcome. The objective of the study was to assess the level of knowledge, attitudes, and practices toward epilepsy, the stigma related to epilepsy and the quality of life in people with epilepsy (PWE) before and after the interventional campaign directed toward representative members of the rural communities in the Chaco region in Bolivia.
The study was conducted in three areas of Bolivia. Key subjects from each community were randomly selected. Before and after the courses they answered a questionnaire to assess their knowledge, attitudes, beliefs, and practices about epilepsy, a validated Stigma Scale of Epilepsy (SSE) and Quality of Life in Epilepsy Inventory-10 (QOLIE-10).
Two hundred sixteen subjects were involved in the program. Only 133 (61.6%) subjects completed the questionnaires a month after the educational program. A significant improvement was recorded in knowledge, attitudes, and practices toward epilepsy, and a significant reduction was found in the mean SSE total score (38.3 ± 14.7 vs. 28.5 ± 12.3; p < 0.01), reflecting a reduction of stigma levels. Regarding the quality of life, after the training, PWE stated to experience less depression, memory difficulties, work or social issues, and seizure worry.
Our study confirms that continuous educational campaigns can lead to a significant change in the social perception and attitudes toward epilepsy.
癫痫占全球疾病总负担的 0.7%左右，在拉丁美洲国家（LAC）的低收入和中等收入国家（LMIC）中尤为普遍，并与显著残疾相关。我们的小组在玻利维亚查科地区的农村地区开展了一项基于社区的癫痫意识计划，旨在提高人们对癫痫的认识，该计划分为两部分，第一部分针对全科医生，第二部分针对农村社区的护士和社区卫生工作者（CHWs），结果令人满意。该研究的目的是评估癫痫的知识、态度和实践水平、与癫痫相关的耻辱感以及癫痫患者（PWE）的生活质量，在针对玻利维亚查科地区农村社区代表性成员的干预活动之前和之后进行评估。
该研究在玻利维亚的三个地区进行。每个社区的关键参与者都被随机选出。在课程之前和之后，他们回答了一份问卷，以评估他们对癫痫的知识、态度、信仰和实践、经过验证的癫痫耻辱量表（SSE）和癫痫生活质量量表-10（QOLIE-10）。
共有 216 名参与者参与了该计划。只有 133 名（61.6%）参与者在教育计划一个月后完成了问卷。在对癫痫的知识、态度和实践方面取得了显著改善，并且 SSE 总分平均值显著降低（38.3±14.7 与 28.5±12.3；p<0.01），反映出耻辱感水平的降低。关于生活质量，在培训后，PWE 表示抑郁、记忆困难、工作或社会问题以及癫痫担忧的情况有所减少。
我们的研究证实，持续的教育活动可以导致对癫痫的社会认知和态度发生重大变化。
