Rawlings Gregg H, Brown Ian, Stone Brendan, Reuber Markus
Academic Neurology Unit, University of Sheffield, UK.
Department of Psychology, University of Sheffield, UK.
Seizure. 2017 Aug;50:83-91. doi: 10.1016/j.seizure.2017.06.006. Epub 2017 Jun 15.
Qualitative studies examining lived experiences of psychogenic nonepileptic seizures (PNES) have predominantly relied on datasets collected using clinical or research interviews. This study pursued a different approach by investigating individuals' written accounts of their condition.
Participants (n=19) were recruited from membership-led organisations for individuals living with seizures and from a United Kingdom hospital. Participants were instructed to produce four pieces of writing: 1) about their thoughts and feelings about their condition; 2) a letter to their condition; 3) a letter to their younger self; and 4) about a personal value. All writings were analysed using thematic analysis.
Six main-themes emerged from the data. Theme 1: 'living with PNES' demonstrated that all participants presented the condition as having a debilitating effect. Theme 2: 'Emotions' revealed that individuals were struggling with anxiety, low mood and self-worth. Theme 3: 'Seizure symptoms' showed variability was a prominent feature in the description of ictal events. Theme 4: 'Treatment and outcomes' demonstrated that individual's perception of diagnosis and therapy differed greatly. Theme 5: 'Causation and development' revealed that the majority of participants spontaneously reported experiencing a traumatic event in the past. Theme 6: 'Lack of understanding' by themselves, the public and healthcare professionals appeared to pose considerable challenges to participants.
Qualitative research has an important role to play for improving our understanding of PNES. The findings contribute to the literature by highlighting the nature of stigma that people with PNES experience, and also their proneness to demonstrate problems with self-worth.
定性研究考察了心因性非癫痫性发作（PNES）的生活经历，主要依赖于通过临床或研究访谈收集的数据集。本研究采用了不同的方法，通过调查个人对自身病情的书面描述来进行。
从癫痫患者会员主导组织和英国一家医院招募了19名参与者。参与者被要求撰写四篇文章：1）关于他们对自身病情的想法和感受；2）给他们病情的一封信；3）给年轻时自己的一封信；4）关于个人价值观。所有文章均采用主题分析法进行分析。
数据中出现了六个主要主题。主题1：“与PNES共存”表明，所有参与者都表示这种疾病具有使人衰弱的影响。主题2：“情绪”揭示了个体在焦虑、情绪低落和自我价值方面挣扎。主题3：“发作症状”表明，发作事件描述中的变异性是一个突出特征。主题4：“治疗与结果”表明，个体对诊断和治疗的认知差异很大。主题5：“病因与发展”揭示，大多数参与者自发报告过去经历过创伤性事件。主题6：他们自己、公众和医疗专业人员的“缺乏理解”似乎给参与者带来了相当大的挑战。
定性研究对于增进我们对PNES的理解具有重要作用。这些发现通过突出PNES患者所经历的耻辱感的本质以及他们在自我价值方面容易出现的问题，为该文献做出了贡献。
