1 University of Sheffield, Sheffield, United Kingdom.
Qual Health Res. 2018 May;28(6):950-962. doi: 10.1177/1049732317748897. Epub 2018 Jan 1.
This study examines the subjective experience of living with epilepsy or psychogenic nonepileptic seizures (PNES) by thematically comparing individuals' written accounts of their condition. Five key differences emerged. Theme 1: "Seizure onset" revealed differences in how individuals think about and ruminate over the possible causes of their condition. Theme 2: "Emotive tone" demonstrated that writings of those with epilepsy reflected stable emotions (no intense emotional reactions), whereas those of writers with PNES reflected anxiety and low mood. Theme 3: "Seizure symptoms" showed differences in the conceptualization of seizures. Theme 4: "Treatment" explored differences in the diagnostic journey and experiences of health care professionals. Theme 5: "Daily life" revealed that those with epilepsy perceived sequelae and seizures as something that must be fought, whereas those with PNES tended to describe their seizures as a place they enter and something that has destroyed their lives. The findings have implications for treatment and management.
本研究通过主题比较个体对自身状况的描述，考察了癫痫或心因性非癫痫性发作（PNES）患者的主观体验。研究中出现了五个主要差异。主题 1：“发作起始”揭示了个体思考和反复思考自身疾病可能病因方式的差异。主题 2：“情绪基调”表明，癫痫患者的描述反映出稳定的情绪（无强烈的情绪反应），而 PNES 患者的描述则反映出焦虑和情绪低落。主题 3：“发作症状”展示了对发作的概念化差异。主题 4：“治疗”探讨了诊断过程和医疗保健专业人员的体验差异。主题 5：“日常生活”揭示了癫痫患者认为后遗症和发作是必须与之抗争的，而 PNES 患者则倾向于将发作描述为他们进入的一个地方，是一种摧毁了他们生活的东西。研究结果对治疗和管理具有启示意义。
