University of Ljubljana, Faculty of Medicine, Vrazov trg 2, 1000 Ljubljana, Slovenia.
University of Ljubljana, Faculty of Medicine, Department of Child, Adolescent and Developmental Neurology, Children's Hospital, University Medical Centre, Bohoričeva 20, 1000 Ljubljana, Slovenia.
Behav Neurol. 2021 Jul 26;2021:9976110. doi: 10.1155/2021/9976110. eCollection 2021.
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.
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.
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.
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.
癫痫是一种复杂的疾病。癫痫的后果多种多样，表现在癫痫患者（PWE）生活的各个方面。本研究的目的是定义个体对癫痫的体验，用叙述的方式表达，并找到每个叙述的根源——PWE 对疾病体验的核心事件，他们围绕该事件构建整体叙述。
采用定性、现象学研究方法。我们对 22 名 PWE 进行了半结构化访谈，并使用归纳和演绎相结合的方法对内容进行分析，在此基础上确定了主要叙述。
癫痫叙述的主要叙述是 PWE 的重要生活经历。我们将主要叙述分为四组：生活方式的改变、人际关系的改变、引发事件的后果和疾病的局限性。在我们的研究中，我们发现主要叙述除了一种情况外，都是癫痫的次要（心理社会）因素，而不是其症状（癫痫发作）。主要叙述揭示了与癫痫相关的生活方面，这表明 PWE 感到了根本性的丧失。
癫痫体验的叙述已被证明是了解 PWE 疾病和生活以及癫痫相关生活前沿方面的重要信息来源。我们在主要叙述中确定的次要癫痫因素在所有情况下都是 PWE 的最大负担，但有一种情况除外。
