Queen's Nurse, Florence Nightingale Scholar and PhD student, University of Portsmouth.
Mental Health Governance Lead, Solent NHS Trust, and PhD Supervisor, University of Portsmouth.
Br J Community Nurs. 2022 Apr 2;27(4):188-198. doi: 10.12968/bjcn.2022.27.4.188.
Motor neurone disease or amyotrophic lateral sclerosis is a rapidly progressive terminal neurodegenerative condition caused by degeneration of the upper and lower motor neurones in the central nervous system of the brain. The effects of motor neurone disease are multifaceted, leading to many adjustments in everyday life. This literature review asked what the experiences of people living with motor neurone disease was before and during the COVID-19 pandemic and during the COVID-19 pandemic, especially in terms of their condition and the support they received from health and social care services. A key theme identified was lack of knowledge among professionals when they cared for people living with motor neurone disease and their families. This lack of knowledge often resulted in delayed diagnosis and poor standards of care. COVID-19 impacted on the care of people living with motor neurone disease and their families, and there is a paucity of evidence on how services were perceived by these groups during the COVID-19 pandemic. The experiences of people living with motor neurone disease and their families are currently missing in the literature. In conclusion, further studies are required to include care of people living with motor neurone disease and their families.
运动神经元病或肌萎缩性侧索硬化症是一种由中枢神经系统上下运动神经元变性引起的快速进行性终末神经退行性疾病。运动神经元病的影响是多方面的，导致日常生活中的许多调整。本文献综述探讨了在 COVID-19 大流行之前、期间和期间，患有运动神经元病的人的经历，特别是在他们的病情和他们从卫生和社会保健服务中获得的支持方面。确定的一个关键主题是，专业人员在照顾患有运动神经元病的人和他们的家人时知识匮乏。这种缺乏知识往往导致诊断延迟和护理标准不佳。COVID-19 对患有运动神经元病的人和他们的家人的护理产生了影响，而且在 COVID-19 大流行期间，这些群体对服务的看法缺乏证据。目前，文献中缺少患有运动神经元病的人和他们的家人的经历。总之，需要进一步的研究来包括对患有运动神经元病的人和他们的家人的护理。
