Kajumba Mayanja M, Njeru Paula, Prose Neil S, Mason Aryn, Ramasubramanian Pratamesh, Tebulwa Joanita Berytah, Kakooza-Mwesige Angelina, Andrews Isabelle, Johnson Tyler, Nshemerirwe Sylvia, Kalubi Peter, Koltai Deborah
Department of Mental Health and Community Psychology, Makerere University, P. O. Box 7062, Kampala, Uganda.
Duke Division of Global Neurosurgery and Neurology, Department of Neurosurgery, Durham, NC, USA.
BMC Psychol. 2025 Jul 1;13(1):689. doi: 10.1186/s40359-025-03030-2.
Despite the advancement in medical knowledge, epilepsy is still one of the most highly misunderstood and stigmatized neurological conditions in Sub-Saharan Africa. It is widely believed to be a contagious disease, caused by demonic possession, witchcraft, or other spiritual phenomena, and in some cases attributed to both biologic and supernatural etiologies. These misconceptions and the associated stigma result in social rejection, emotional distress, and feelings of shame. Consequently, a large number of adolescents with epilepsy (AWE) avoid seeking medical treatment, resulting in increased seizure intensity and frequency, which in turn reinforces epilepsy stigma. This study sought to explore the experiences of AWE and their perceptions on health literacy interventions for minimizing misconceptions and stigma, and enhancing epilepsy management in Ugandan communities.
We recruited 30 AWE receiving treatment from one regional and two national referral hospitals. Data was collected using focus group discussions and analyzed using thematic analysis procedures.
Despite the fact that our sample entirely comprised of AWE receiving biomedical care, the results revealed that the largest group of respondents (58.6%) believed that supernatural forces alone caused epilepsy, and another 20.7% attributed it to a combination of supernatural and biologic elements, while only 17.2% understood epilepsy to be an illness with a biomedical etiology. Among the most prominent misconceptions was that epilepsy is a contagious disease, and a number of the AWE reported that people around them, including teachers and family members, avoid touching them, do not allow them to share cutlery, cups, or other items, and that they are left unattended during seizures. Most of the AWE reported that they have to conceal their condition, and some reported that on discovering that they had epilepsy, they were expelled from school.
The misconceptions and stigma not only result in discrimination and emotional distress, but also hinder seeking and adhering to treatment. The AWE emphasized the need for health literacy interventions to minimize misconceptions and stigma and enhance epilepsy management in Ugandan communities.
The online version contains supplementary material available at 10.1186/s40359-025-03030-2.
尽管医学知识不断进步，但在撒哈拉以南非洲，癫痫仍是最容易被误解和污名化的神经系统疾病之一。人们普遍认为它是一种传染病，由恶魔附身、巫术或其他超自然现象引起，在某些情况下，病因既有生物学因素，也有超自然因素。这些误解和相关的污名导致社会排斥、情绪困扰和羞耻感。因此，大量癫痫青少年（AWE）避免寻求医疗治疗，导致癫痫发作强度和频率增加，这反过来又强化了癫痫污名。本研究旨在探讨癫痫青少年的经历以及他们对健康素养干预措施的看法，这些干预措施旨在减少误解和污名，并加强乌干达社区的癫痫管理。
我们从一家地区转诊医院和两家国家级转诊医院招募了30名接受治疗的癫痫青少年。通过焦点小组讨论收集数据，并使用主题分析程序进行分析。
尽管我们的样本完全由接受生物医学治疗的癫痫青少年组成，但结果显示，最大比例的受访者（58.6%）认为仅超自然力量会导致癫痫，另有20.7%将其归因于超自然和生物学因素的结合，而只有17.2%的人认为癫痫是一种具有生物医学病因的疾病。最突出的误解之一是癫痫是一种传染病，许多癫痫青少年报告说，他们周围的人，包括教师和家庭成员，避免与他们接触，不允许他们共用餐具、杯子或其他物品，并且在他们癫痫发作时无人照看。大多数癫痫青少年报告说，他们不得不隐瞒自己的病情，一些人报告说，在发现自己患有癫痫后，他们被学校开除。
这些误解和污名不仅导致歧视和情绪困扰，还阻碍了寻求和坚持治疗。癫痫青少年强调需要开展健康素养干预措施，以减少误解和污名，并加强乌干达社区的癫痫管理。
在线版本包含可在10.1186/s40359-025-03030-2获取的补充材料。
