School of Social Sciences, Humanities and Law, Teesside University, Borough Road, Middlesbrough, TS1 3BX, UK.
Zayed University, United Arab Emirates.
Epilepsy Behav. 2018 Dec;89:42-47. doi: 10.1016/j.yebeh.2018.10.003. Epub 2018 Oct 26.
Living with a chronic condition can challenge a person's identity, yet there is a paucity of research exploring this experience for people with epilepsy and particularly for those diagnosed in adulthood. Consequently, through an interpretative phenomenological approach, the current study aimed to explore what the experience of adult-onset epilepsy meant for a person's identity. Thirty-nine people with adult-onset epilepsy from across the UK took part in up to two semi-structured interviews. A modified form of interpretative phenomenological analysis was conducted and identified three themes: 1) disarming the impact of seizures considered strategies used to control seizure occurrence and regain a sense of control over the body; 2) distinguishing the self from the body highlighted participants' attempts to separate their sense of self from the unpredictability of their bodies; 3) separating epilepsy from themselves demonstrated how participants externalized epilepsy from themselves in order to reject it as part of their identity. The findings highlighted that living with adult-onset epilepsy can challenge a person's sense of self and trust in their body, resulting in the adoption of various strategies to manage the threat to their identity. As such, practitioners must pay attention to the impact that adult-onset epilepsy can have on a person's identity and faith in their body.
患有慢性疾病可能会挑战一个人的身份认同，但目前针对癫痫患者（尤其是成年后被诊断出患有癫痫的患者）的这一经历的研究却很少。因此，本研究采用解释现象学方法，旨在探讨成年后癫痫对个人身份认同意味着什么。来自英国各地的 39 名成年后被诊断患有癫痫的患者参加了多达两次的半结构化访谈。采用了一种改良的解释现象学分析方法，确定了三个主题：1）消除癫痫发作的影响，认为这是控制发作发生和重新获得对身体控制感的策略；2）将自我与身体区分开来，突出了参与者试图将自我意识与身体的不可预测性分开；3）将癫痫与自身分开，表明参与者将癫痫外化，以拒绝将其视为自身身份的一部分。研究结果表明，成年后癫痫可能会挑战个人的自我意识和对身体的信任，导致他们采取各种策略来应对身份认同受到的威胁。因此，从业者必须关注成年后癫痫对个人身份认同和对身体的信任的影响。
