Neurodisability care in the time of COVID-19.

BACKGROUND: The COVID-19 pandemic resulted in an unprecedented societal and healthcare global crisis. Associated changes in regular healthcare provision and lifestyle through societal lockdown are likely to have affected clinical management and well-being of children/young people with neurodisability, who often require complex packages of multidisciplinary care. METHODS: We surveyed 108 families of children/young people with severe physical neurodisability and multiple comorbidities to understand how the pandemic had affected acute clinical status, routine healthcare provision, schooling and family mental and social well-being. RESULTS: A significant proportion of families reported missing hospital appointments and routine therapy, with subsequent worsening of symptoms and function. Families additionally described worsening stress and anxiety during the pandemic, regardless of their baseline level of socio-economic deprivation. CONCLUSION: This highlights the profound effect of the COVID-19 pandemic on health and function in young people with severe neurodisabilities and emphasizes the clear need to better understand how to support this vulnerable population moving forwards.

Care in COVID: A qualitative analysis of the impact of COVID-19 on the health and care of children and young people with severe physical neurodisability and their families.

AIM: To evaluate clinicians' perspectives on the impact of 'lockdown' during the COVID-19 pandemic for children and young people with severe physical neurodisability and their families. METHOD: Framework analysis of comments from families during a recent service review was used to code the themes discussed according to the World Health Organization International Classification of Functioning, Disability and Health (ICF) and interpreted into emergent themes to summarize the impact of lockdown (Stage 1). They were presented to a clinician focus group for discussion (consultants and physiotherapists working in a specialist motor disorders service, [Stage 2]). RESULTS: Three overarching themes 'Uncertainty and Anxiety', 'Exacerbation of Existing Inequalities' and 'Care Provision: Reaction, Adaptation, and Innovation' summed up the impact of the COVID-19 pandemic on health and well-being in children and young people with neurodisability and their families. All themes were influenced by time. INTERPRETATION: This study reflects clinician's perceptions of family experiences of the pandemic and lockdown. Significant impact is apparent in the entire U.K. population, but the complexity of care needs for children with physical neurodisability exacerbates this. Lobbying for government policy is vital to ensure that all children, and in particular those with significant health and social care needs, are protected and continue to access services. During the restoration and recovery phase of the pandemic, there is a need for service reconfiguration that utilizes what we have learned and is adaptive to individual family circumstances.

Paediatric neurodisability and sleep disorders: clinical pathways and management strategies.

Sleep disorders are common in children with neurodisability. Their presentation is often complex. This complexity of presentation can make sleep disorders in children with neurodisability daunting to diagnose and manage. Both parents and healthcare professionals have identified sleep disorders as a healthcare outcome that they prioritise in children with neurodisability. We aim to explore the challenges of diagnosing sleep problems, discuss common difficulties with sleep in children with neurodisability and will touch on how to set up a service to support and manage sleep, working through case examples.