Introduction. Epilepsy is a complex disease. The consequences of epilepsy are varied and manifested in all aspects of people with epilepsy’s (PWE) lives. The purpose of this study was to define individual experiences of epilepsy, expressed in narratives, and to find the stem of each narrative—a core event in the PWE’s experience of the disease around which they structure their overall narrative. Method. A qualitative, phenomenological research method was used. We conducted semistructured interviews with 22 PWE and analysed the content using a combination of inductive and deductive methods, based on which we determined the stem narratives. Results. The stem narrative of the epilepsy narrative is an important life experience of PWE. We divided the stem narratives into four groups: lifestyle changes, relationship changes, the consequences of the inciting incident, and the limitations of the disease. In our study, we found that the stem narrative was, in all but one case, a secondary (psychosocial) factor resulting from epilepsy, but not its symptom (epileptic seizure). The stem narrative, where aspects of life with epilepsy are exposed, points to a fundamental loss felt by PWE. Conclusion. The narrative of the experience of epilepsy has proven to be an important source of information about the disease and life of PWE and also about the aspects at the forefront of life with epilepsy. The secondary epilepsy factors that we identified in the stem narratives were the greatest burden for PWE in all cases but one.

中文翻译：

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癫痫经历中的心理社会因素：叙事的定性分析

简介。癫痫是一种复杂的疾病。癫痫的后果是多种多样的，并表现在癫痫患者 (PWE) 生活的各个方面。本研究的目的是定义以叙述形式表达的个体癫痫经历，并找到每个叙述的主干——PWE 疾病经历中的核心事件，他们围绕该事件构建整体叙述。方法。使用了定性的现象学研究方法。我们对 22 位 PWE 进行了半结构化访谈，并结合归纳和演绎的方法对内容进行了分析，并在此基础上确定了词干叙述。结果. 癫痫叙事的主干叙事是PWE重要的人生经历。我们将主干叙述分为四组：生活方式的改变、关系的改变、煽动事件的后果和疾病的局限性。在我们的研究中，我们发现除了一种情况外，主干叙述是癫痫引起的次要（心理社会）因素，而不是其症状（癫痫发作）。主干叙述揭示了癫痫患者生活的各个方面，表明 PWE 感受到了根本性的损失。结论. 癫痫经历的叙述已被证明是有关 PWE 的疾病和生活以及癫痫生活前沿方面的重要信息来源。我们在主干叙述中确定的继发性癫痫因素是 PWE 在所有情况下的最大负担，但一个除外。