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Perceptions of people with motor neurone disease, families and HSCPs: a literature review

02 April 2022
29 min read
Volume 27 · Issue 4

Abstract

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.

Motor neurone disease (MND) is a result of degeneration of the upper and lower motor neurones in the brain and spinal cord (Ilardi et al, 2013). Worldwide, MND is also known as amyotrophic lateral sclerosis (ALS), or Lou Gehrig disease. Throughout this literature review, the term MND has been used, as it is the most commonly used term to describe this disease in the UK, where this review was conducted. The rapid deterioration of the motor neurones causes impairment of muscles controlling mobility, swallowing, speech and breathing (Mitchell and Borasio, 2007; Lillo et al, 2010; Kiernan et al, 2011; Caga et al, 2015a;b). This resulting impairment of the muscles leads to swallowing difficulties (dysphagia), poor formation of words (dysarthria) or inability to form words (anarthria), paralysis of upper and lower limbs, mild frontal lobe impairment, cognitive impairment and breathing difficulties (Wijesekera and Leigh, 2009: Phukan et al, 2012).

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