Hotchkiss Brain Institute, University of Calgary, Canada; Department of Clinical Neurosciences, University of Calgary, Canada.
Hotchkiss Brain Institute, University of Calgary, Canada; Department of Community Health Sciences, University of Calgary, Canada; O'Brien Institute of Public Health, University of Calgary, Canada; Department of Clinical Neurosciences, University of Calgary, Canada; Centre for Health Informatics, University of Calgary, Canada.
Epilepsy Behav. 2020 Dec;113:107599. doi: 10.1016/j.yebeh.2020.107599. Epub 2020 Nov 4.
The emergence of SARS-CoV-2 (COVID-19) as a novel coronavirus resulted in a global pandemic that necessitated the implementation of social distancing measures. These public health measures may have affected the provision of care for patients with epilepsy. Social isolation may have also adversely affected well-being and quality of life due to informal and formal support networks becoming less accessible. The purpose of this qualitative study was to examine the lived experiences of patients with epilepsy and to see how their quality of life and healthcare has been affected by the COVID-19 pandemic.
From April 27 to May 15, 2020 we performed remote interviews with 18 participants who had virtual appointments with their healthcare providers and were enrolled in the Calgary Comprehensive Epilepsy Program registry. Interviews were recorded and transcribed, after which transcripts were analyzed and coded into relevant themes using NVivo 12.
Three broad themes emerged throughout the interviews:1) impact of pandemic on informal and formal support systems; 2) impact of pandemic on healthcare provision; and 3) concerns about the impact of the pandemic on personal situations and society in the future. Participants reported anxiety and stress about decreased social engagement and activity cessations. Although face-to-face appointments were preferred, virtual care was well-received. Common concerns about the future included securing employment and burnout from balancing family responsibilities. Some patients also feared they would be stigmatized as society adapted to the situation.
This study highlights the need for additional research in anticipation of the implementation of remote medicine in the management and treatment of epilepsy. It also highlights the tenacity of those living with epilepsy during difficult periods despite social and familial pressures. Raising awareness during this time about the lives and experiences of epilepsy patients can help challenge misconceptions and stigma in the workplace and wider society.
新型冠状病毒（SARS-CoV-2，即 COVID-19）的出现引发了全球大流行，这需要采取社会隔离措施。这些公共卫生措施可能会影响癫痫患者的护理提供。由于非正式和正式的支持网络变得难以接触，社会隔离也可能对幸福感和生活质量产生不利影响。本定性研究的目的是检查癫痫患者的生活体验，了解 COVID-19 大流行如何影响他们的生活质量和医疗保健。
我们于 2020 年 4 月 27 日至 5 月 15 日，通过远程访谈了 18 名参与者，这些参与者与他们的医疗保健提供者进行了虚拟预约，并被纳入卡尔加里综合癫痫计划登记处。访谈被录音并转录，然后使用 NVivo 12 将转录本分析并编码为相关主题。
在整个访谈中出现了三个广泛的主题：1）大流行对非正式和正式支持系统的影响；2）大流行对医疗保健提供的影响；3）对大流行对个人情况和未来社会的影响的担忧。参与者报告了社交参与减少和活动停止导致的焦虑和压力。虽然面对面预约是首选，但虚拟护理也得到了很好的接受。对未来的常见担忧包括就业保障和平衡家庭责任的倦怠。一些患者还担心他们会因社会适应这种情况而受到污名化。
本研究强调了在实施远程医疗管理和治疗癫痫症方面需要进行更多研究。它还强调了在困难时期，即使在社会和家庭压力下，那些患有癫痫症的人也需要坚持下去。在这个时候提高对癫痫患者生活和经历的认识，可以帮助在工作场所和更广泛的社会中挑战误解和污名化。
