OBJECTIVE Epilepsy is one of the most prevalent, treatable neurological diseases globally. In sub-Saharan Africa, people with epilepsy (PWE) frequently seek treatment from traditional or pastoral healers, who are more accessible than biomedical care providers. This often contributes to the substantial time delay in obtaining adequate biomedical care for these patients. In Uganda, the few biomedical providers who can treat epilepsy cannot meet the great need for epilepsy care. Additionally, patients are often hesitant to seek biomedical care, often preferring the easily accessible and trusted sociocultural treatment options. This study sought to elucidate the barriers to biomedical care for PWE as well as identify potential solutions to overcome these barriers from various stakeholder perspectives. METHODS This study used qualitative research methods. Semistructured interviews and focus group discussions were conducted with four major stakeholder groups: PWE or family members of PWE, neurologists and psychiatrists, traditional healers, and pastoral healers. All interviews and focus group discussions that were in English were audio recorded and transcribed verbatim. Those that were not in English were translated live and audio recorded. A translator later translated the non-English portion of audio recording to ensure proper interpretation. Two independent coders coded the dataset and conducted an inter-rater reliability (IRR) assessment to ensure reliable coding of the data. Thematic analysis was then performed to discern themes from the data and compare nuances between each of the study design groups. RESULTS Participants discussed several different causes of epilepsy ranging from spiritual to biological causes, often incorporating elements of both. Commonly endorsed spiritual causes of epilepsy included witchcraft and ancestral spirits. Commonly endorsed biological causes included genetics, fever, malaria, and brain injury. For patients and families, beliefs about the cause of epilepsy often played a role in whom they chose to seek treatment from. Three major barriers to biomedical care were discussed: practical barriers, medical infrastructure barriers, and barriers related to stigma. Practical barriers related to issues such as transportation, cost of medical care, and distance to the nearest healthcare facility. Under medical infrastructure, drug stock-outs and lack of access to antiepileptic drugs (AEDs) were the most consistent problems stated among patients. Stigma was heavily discussed and brought up by nearly every participant. Additionally, three significant solutions to improving epilepsy care in Uganda were highlighted by participants: collaboration among treatment providers, community sensitization efforts to address stigma, and building medical infrastructure. Within building infrastructure, all participant types, except traditional healers, proposed the development of an epilepsy clinic designed to specifically treat epilepsy. CONCLUSIONS Based on these findings, there are four critical interventions that should be considered for improving epilepsy care in Uganda: the creation of dedicated epilepsy clinics, infrastructure strengthening to address medication stock-outs, community outreach programs for sensitization, and collaboration between biomedical providers and traditional healers. This article is part of the Special Issue "The intersection of Culture, Resources, and Disease: Epilepsy Care in Uganda".

中文翻译：

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利益相关者对乌干达癫痫护理的实际和文化障碍的看法

目的 癫痫是全球最普遍、最可治疗的神经系统疾病之一。在撒哈拉以南非洲，癫痫 (PWE) 患者经常向传统或牧师治疗师寻求治疗，他们比生物医学护理提供者更容易获得。这通常会导致为这些患者获得足够的生物医学护理的大量时间延迟。在乌干达，少数能够治疗癫痫的生物医学提供者无法满足对癫痫护理的巨大需求。此外，患者往往对寻求生物医学护理犹豫不决，往往更喜欢容易获得且值得信赖的社会文化治疗方案。本研究旨在阐明 PWE 生物医学护理的障碍，并从各种利益相关者的角度确定克服这些障碍的潜在解决方案。方法 本研究采用定性研究方法。与四个主要利益相关者群体进行了半结构化访谈和焦点小组讨论：PWE 或 PWE 的家庭成员、神经病学家和精神病学家、传统治疗师和牧师治疗师。所有用英语进行的采访和焦点小组讨论都被录音并逐字转录。那些不是英文的内容被现场翻译并录音。一名翻译后来翻译了录音的非英语部分，以确保正确解释。两名独立的编码员对数据集进行编码并进行评分者间可靠性 (IRR) 评估，以确保数据编码的可靠性。然后进行主题分析以从数据中辨别主题并比较每个研究设计组之间的细微差别。结果 参与者讨论了几种不同的癫痫病因，从精神原因到生物学原因，通常包含两者的要素。普遍认可的癫痫精神原因包括巫术和祖先精神。普遍认可的生物学原因包括遗传、发烧、疟疾和脑损伤。对于患者和家属来说，对癫痫病因的看法通常会影响他们选择向谁寻求治疗。讨论了生物医学护理的三个主要障碍：实践障碍、医疗基础设施障碍和与污名相关的障碍。与交通、医疗费用以及与最近的医疗机构的距离等问题相关的实际障碍。在医疗基础设施下，药物缺货和无法获得抗癫痫药物 (AED) 是患者中最常见的问题。几乎每个参与者都对污名进行了大量讨论和提出。此外，与会者还强调了改善乌干达癫痫护理的三个重要解决方案：治疗提供者之间的合作、消除耻辱感的社区宣传工作以及建设医疗基础设施。在建筑基础设施中，除传统治疗师外，所有参与者都提议开发专门治疗癫痫的癫痫诊所。结论 基于这些发现，应考虑采取四项关键干预措施来改善乌干达的癫痫护理：建立专门的癫痫诊所、加强基础设施以解决药物短缺问题、社区宣传计划，以及生物医学提供者和传统治疗师之间的合作。本文是特刊“文化、资源和疾病的交叉点：乌干达的癫痫护理”的一部分。