Mengoni Silvana E, Gates Bob, Parkes Georgina, Wellsted David, Barton Garry, Ring Howard, Khoo Mary Ellen, Monji-Patel Deela, Friedli Karin, Zia Asif, Durand Marie-Anne
Centre for Health Services and Clinical Research, Department of Psychology, University of Hertfordshire, Hatfield, UK.
Institute for Practice, Interdisciplinary Research and Enterprise (INSPIRE), University of West London, UK.
Epilepsy Behav. 2016 Nov;64(Pt A):133-139. doi: 10.1016/j.yebeh.2016.09.029. Epub 2016 Oct 11.
Epilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID.
People with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically (dual independent coding for 30% of the transcripts).
Three themes emerged (participant characteristics, living with epilepsy, epilepsy management and information needs) which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy.
This study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy.
癫痫影响着五分之一的智力残疾（ID）患者，但对于他们患癫痫的生活经历却知之甚少。开展了一项定性研究，以调查癫痫对ID患者的影响及管理情况。
邀请癫痫患者及ID患者及其护理人员参与半结构化访谈。11名ID患者及其护理人员一起接受了访谈，1名ID患者及其护理人员分别接受了访谈，对1名ID患者进行了两次单独访谈，对1名护理人员进行了一次单独访谈。访谈内容逐字记录、编码并进行主题分析（对30%的访谈记录进行双人独立编码）。
出现了三个主题（参与者特征、患癫痫的生活、癫痫管理及信息需求），具体如下：1）在健康状况、沟通能力癫痫严重程度、对癫痫的感知控制及支持需求方面存在差异；2）相当一部分参与者通过抗癫痫药物使癫痫发作的严重程度和频率有所降低；3）癫痫及相关发作对参与者的活动和生活质量产生终身影响；4）相当一部分参与者感到癫痫带来的负担以及管理病情存在困难；5）对癫痫相关服务和护理的满意度较高；6）总体上缺乏关于癫痫的易于获取的书面信息。
本研究突出了癫痫及相关发作对ID患者日常生活和生活质量的重大影响。尽管相当一部分参与者及其护理人员认为他们的癫痫得到了良好控制，但大多数人报告在管理癫痫并将其对健康的影响降至最低方面存在困难。除护理人员和癫痫诊所提供的支持外，参与者未获取任何关于癫痫的适应性自我管理或信息资源。
