Rawlings Gregg H, Brown Ian, Stone Brendan, Reuber Markus
Academic Neurology Unit, University of Sheffield, UK.
Department of Psychology, University of Sheffield, UK.
Epilepsy Behav. 2017 Jul;72:63-70. doi: 10.1016/j.yebeh.2017.04.026. Epub 2017 May 30.
This study examines the subjective experience of living with epilepsy by thematically analyzing participants' written accounts of their condition. Writing is seen as an individual act allowing for private exploration, reflection and expression of thoughts and feelings. Participants (n=20) were recruited from a United Kingdom hospital and from membership-led organizations for individuals living with seizures. Participants were asked 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 analyzed thematically using a theory- and data-driven approach. Five main-themes and 22 sub-themes emerged from the data. Theme 1: 'seizure onset' demonstrated that the development of seizures and subsequent diagnosis was an important event that could change an individuals' identity. Theme 2: 'seizure symptoms' revealed participants externalized their seizures as an intrusive agent with a constant presence in their lives. Theme 3: 'treatment and outcome' reflected medication as an essential means to controlling seizures with subsequent side effects being perceived as a compromise. Theme 4: 'living with epilepsy' explored the consequences of the condition including restrictions and stigma. Theme 5: 'displays of coping' demonstrated that, for the most part, participants were keen to present themselves as living well with epilepsy. The results add to the growing research applying qualitative methodologies to investigate the phenomenology of epilepsy. Qualitative research can improve our understanding and awareness of the condition, as well as inform clinical practice.
本研究通过对参与者关于自身病情的书面记录进行主题分析，考察了癫痫患者的主观体验。写作被视为一种个人行为，能够进行私下探索、反思以及表达思想和感受。参与者（n = 20）从英国一家医院以及针对癫痫患者的会员制组织中招募。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）关于一种个人价值观。所有文章均采用理论与数据驱动的方法进行主题分析。数据中出现了五个主要主题和22个次主题。主题1：“癫痫发作 onset”表明癫痫发作的发展及随后的诊断是一个重要事件，可能会改变个人身份。主题2：“癫痫症状”显示参与者将癫痫发作外在化为一种侵入性因素，在他们生活中持续存在。主题3：“治疗与结果”反映出药物是控制癫痫发作的必要手段，而随后出现的副作用被视为一种妥协。主题4：“与癫痫共存”探讨了该病症的后果，包括限制和污名。主题5：“应对方式展示”表明，在很大程度上，参与者热衷于展现自己与癫痫和谐共处的状态。这些结果为越来越多应用定性方法研究癫痫现象学的研究增添了内容。定性研究可以增进我们对该病症的理解和认识，并为临床实践提供参考。
