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

ABSTRACT

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.