Experiences of people living with motor neurone disease and their families during the COVID-19 pandemic in the UK: informing care by a rapid dissemination of early findings

BackgroundMotor Neurone Disease (MND) is a progressive, fatal neurological condition that leads to complex and variable difficulties for people living with MND (plwMND) and their families. Health and Social Care providers in the UK had to rapidly change the way they work and deliver care during the COVID-19 pandemic, but the experience and impact on plwMND and their families during this time is currently unknown. This study aims to explore the experiences for plwMND and their families and disseminate early findings to inform care delivery.MethodA simple mixed method design using an online data collection tool, Joint Information Systems Committee (JISC) and purposive snowball sampling were employed following ethical approval in August 2021 (SHFEC2021–086) to allow plwMND and their families to express their experiences during the COVID-19 pandemic. Descriptive statistical analysis of quantitative data and reflexive thematic analysis of narratives using NVIVO illustrates key early themes.ResultsTwenty plwMND and 14 family carers have participated so far, giving rich accounts of their experiences during the pandemic. The challenges encountered by plwMND and families during the COVID-19 pandemic in the UK are explored. The main problems described occurred in the first and/or second wave, but some issues are described as ongoing. Communication needs assessment and virtual appointments are key themes. Family members also mentioned respiratory care, comfort care and financial issues. Family members who experienced bereavement during the pandemic described the support received as ‘poor’ or ‘very poor’ and only one family member so far was positive about the end-of-life care. Both groups mentioned lack of in-person care and isolation. Views on virtual appointments with clinicians are mixed.ConclusionMND care in the UK has been impacted negatively by the COVID-19 pandemic. Dissemination of these early findings aims to inform future care delivery during ongoing and subsequent waves.FundingA small grant from the Burdett Trust for Nursing.

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

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.

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

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.