The effect of the initial UK COVID-19 lockdown on the mental health of families with and without a child with a rare disorder

Families across the UK experienced major changes to daily life following the outbreak of Covid-19. The impact on mental health and wellbeing in the general population has already been documented, with increased feelings of anxiety and depression highlighted in adults (e.g., Benke et al. 2020; Pierce et al., 2020), and children in the UK (Bignardi et al., 2020). Rare neurodevelopmental syndromes with a known genetic cause (hereon neurogenetic) are a unique vulnerable group presenting with a combination of physical and mental health problems. Children with these rare syndromes often rely on a range of medical and care specialities due to their complex conditions, and access to this healthcare, education and support has been drastically changed or removed during Covid-19 Many rare neurogenetic syndromes are associated with intellectual disabilities as well as an increased likelihood of mental health problems (Glasson et al., 2020). Under normal circumstances, families of children with rare neurogenetic syndromes experience anxiety, stress and low mood (Rare Disease UK, 2018). Before the pandemic, there was evidence that families of children with intellectual disabilities had poorer parental mental health (e.g., Baker et al., 2020; Fitzgerald & Gallagher, 2021), which has been associated with the perceived impact of child behavioural difficulties and recent life events (Baker et al. 2020). The scale and speed of change in daily life since the start of the lockdown in spring 2020 could therefore exacerbate existing difficulties and mental health problems, or trigger new ones. In this study, we will directly compare the wellbeing of families of children with rare neurogenetic syndromes to families in the typical population during the initial stages of the Covid-19 pandemic, with a focus on parental mental health and child behaviour. By comparing the parental mental health and child behaviour in families with and without children with rare neurogenetic disorders, it will be possible to identify specific challenges and predictors of wellbeing in a uniquely vulnerable population that may require increased resources now and in future major disruptive events. Data on families with neurogenetic conditions was collected by the CoIN team (lead by Author Charlotte Tye), while data on typical families was collected by a separate team, named CoSPACE. Data collection on both sets of the population has already been completed, but the CoIN team (those performing all analyses) have not yet seen any data from the CoSPACE team. At the time of writing, the CoIN dataset has not yet been screened for eligibility or had data processing completed on it, nor has any data analysis taken place.