Perceptions of people with motor neurone disease, families and health and social care providers pre and during the COVID-19 pandemic – a rapid review of the international and UK literature

ABSTRACT

BackgroundMotor Neurone Disease (MND) or Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive terminal neuro-degenerative disease caused by degeneration of the upper and lower motor neurones in the central nervous system of the brain. The effects of MND are multifaceted, leading to many adjustments in everyday life. COVID-19 has changed how care is delivered to people with MND and this literature review aims to explore and compare experiences prior and during the pandemic.MethodA comprehensive search of the literature between 2010–2021 in all major health care databases and websites resulted in 61 papers selected for review, with 4 of these relating to COVID-19. Preferred Reporting Items for Systematic Reviews and Meta- Analysis (PRISMA) guidelines were followed. Studies were quality assessed and data extraction techniques were informed by Hawker et al’s (2002) three stages of assessment of relevance for review questions based on inclusion criteria;data extraction and scoring for methodological rigor. Themes were developed using Thematic Analysis.FindingsKey themes in the pre-COVID-19 literature were perceptions of a lack of knowledge and educational needs for staff;delayed diagnosis;communication problems, high levels of burden for people with MND and family carers, and perceptions of poor standards of care. The literature on MND experiences during the COVID-19 pandemic is limited but indicates that professionals found the delivery of high-quality care challenging. Restrictions to face-to-face services and virtual care was disruptive to usual treatment and supportive care especially during the early waves of the COVID-19 pandemic.ConclusionCOVID-19 has impacted on MND care and service delivery, but there is currently a lack of research exploring the impact of this from the perspective of people with MND and their families. Further research is required to explore include care of pwMND and their families during the COVID-19 pandemic. Keywords Amyotrophic Lateral Sclerosis, ALS, Motor Neurone Disease, MND, Perceptions, COVID-19, Integrated Approach, Multi-Disciplinary Team/MDT, Health Care Collaboration, Health and Social Care Professionals, terminally ill, Palliative Care, Hospice and Palliative Care Nursing, Home Care.