School of Social Sciences, Humanities and Law, Teesside University, Borough Road, Middlesbrough TS1 3BX, UK.
Zayed University, United Arab Emirates.
Epilepsy Behav. 2020 Jan;102:106674. doi: 10.1016/j.yebeh.2019.106674. Epub 2019 Nov 27.
People with epilepsy (PWE) continually report dissatisfaction with the support they receive, particularly in regard to their psychological wellbeing. With its focus on optimal seizure control, epilepsy treatment is entrenched in the medical model of illness, despite growing evidence of the broader psychosocial impact of the condition. This study aimed to explore how PWE experience healthcare in the context of their lives. Semistructured interviews were conducted with thirty-nine adults with epilepsy from across the UK. An adapted version of interpretative phenomenological analysis (IPA) was conducted, and three superordinate themes were identified. Firstly, "negotiating the space between health and illness" identified how participants rejected the illness identity and struggled with a treatment regime, which reminded them of the longevity of their condition. Secondly, "tensions in adopting a biomedical perspective" considered how medical professionals overlooked the negative side effects medication had on participants' lives, in favor of optimal seizure control. Thirdly, "the need for broader support" highlighted the additional psychosocial support PWE require. The findings indicate the need to incorporate person-centered, psychological services within the care pathway for PWE, as well as training for health professionals to recognize the broader impact of epilepsy beyond seizure management.
癫痫患者(PWE)不断报告对他们所获得的支持不满意,特别是在心理健康方面。尽管有越来越多的证据表明该疾病的心理社会影响更为广泛,但癫痫的治疗仍然侧重于最佳的癫痫发作控制,其根植于疾病的医学模式。本研究旨在探讨 PWE 在其生活背景下如何体验医疗保健。研究人员对来自英国各地的 39 名成年癫痫患者进行了半结构化访谈。采用了经过改编的解释现象学分析(IPA)方法,确定了三个主要主题。首先,“在健康和疾病之间协商空间”确定了参与者如何拒绝疾病身份,并与治疗方案作斗争,因为治疗方案使他们想起了病情的长期性。其次,“采用生物医学观点的紧张局势”考虑了医疗专业人员如何忽视药物对参与者生活产生的负面影响,而倾向于最佳的癫痫发作控制。第三,“对更广泛支持的需求”强调了 PWE 需要额外的心理社会支持。研究结果表明,需要在 PWE 的护理途径中纳入以人为本的心理服务,并对卫生专业人员进行培训,以认识到癫痫发作管理以外的更广泛的影响。