Department of Clinical Neurosciences, University of Calgary, Calgary, Canada.
Hotchkiss Brain Institute, University of Calgary, Calgary, Canada.
Can J Neurol Sci. 2022 Mar;49(2):171-183. doi: 10.1017/cjn.2021.70. Epub 2021 Apr 12.
The public health measure restrictions across the world due to COVID-19 have inadvertently impacted the routines for people with Parkinson's disease (PD) and their care partners not only in terms of compromised neurological clinical care but also drastically changing the way of life to minimize the risk of becoming infected. This study explores initial PD patients' lived experiences to observe how quality of life and health care has been affected at the start of the COVID-19 pandemic and provide insight into the importance of patient engagement and virtual care.
Twenty-two virtual, in-depth semi-structured interviews with persons diagnosed with PD who usually attend a Movement Disorders specialty clinic in Calgary, Alberta, were completed between April 28 and May 13, 2020, and the care partners that wished to participate. Interviews were recorded and transcribed, after which transcripts were analyzed and coded into relevant themes using NVivo 12.
Impacts from the public health measures and COVID-19 results into three main themes: (1) Impacts of COVID-19 on PD Clinical Care; (2) Activities of Daily Living; (3) Attitudes and Perceptions. Participants reported worsening in motor and nonmotor symptoms and had to accommodate to clinical care via virtual means which were associated with limitations and suggestions for improvement of remote care.
This study provides a unique opportunity for researchers to better understand the lived experiences of PD patients in all aspects of their life suggesting that innovative means are needed for facilitating virtual health care medicine and increased social interaction.
由于 COVID-19，全球范围内的公共卫生措施限制无意中影响了帕金森病（PD）患者及其护理伙伴的日常生活，不仅使神经科临床护理受到影响，而且极大地改变了生活方式，以最大程度地降低感染风险。本研究探讨了初始 PD 患者的生活体验，以观察在 COVID-19 大流行开始时生活质量和医疗保健如何受到影响，并深入了解患者参与和虚拟护理的重要性。
2020 年 4 月 28 日至 5 月 13 日期间，对通常在阿尔伯塔省卡尔加里的运动障碍专科诊所就诊的 22 名 PD 患者及其希望参与的护理伙伴进行了 22 次虚拟深入半结构化访谈。访谈进行了录音和转录，之后使用 NVivo 12 将转录本分析并编码为相关主题。
公共卫生措施和 COVID-19 的影响分为三个主要主题：（1）COVID-19 对 PD 临床护理的影响；（2）日常生活活动；（3）态度和看法。参与者报告说，运动和非运动症状恶化，不得不通过虚拟手段适应临床护理，这与远程护理的限制和改进建议有关。
本研究为研究人员提供了一个独特的机会，可以更全面地了解 PD 患者的生活体验，表明需要创新手段来促进虚拟医疗保健和增加社交互动。
