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Background The Coronavirus disease 2019 (COVID-19) pandemic has impacted parental and child mental health and wellbeing in the UK. This study aimed to explore the experiences of parents of children with rare neurological and neurodevelopmental conditions with a known or suspected genetic cause (neurogenetic) across the first year of the pandemic in the UK. Methods Semi-structured interviews were conducted with 11 parents of children with rare neurogenetic conditions. Parents were recruited via opportunity sampling from the CoIN Study, a longitudinal quantitative study exploring the impact of the pandemic on the mental health and wellbeing of families with rare neurogenetic conditions. Interviews were analysed using Interpretative Phenomenological Analysis. Results Four main themes were identified: (1) “A varied impact on child wellbeing: from detrimental to ‘no big drama’”; (2) “Parental mental health and wellbeing: impact, changes, and coping”; (3) “'The world had shut its doors and that was that’: care and social services during the pandemic”; and (4) “Time and luck: abstract concepts central to parents’ perspectives of how they coped during the pandemic”. The majority of parents described experiencing an exacerbation of pre-pandemic challenges due to increased uncertainty and a lack of support, with a minority reporting positive effects of the pandemic on family wellbeing. Conclusions These findings offer a unique insight into the experiences parents of children with rare neurogenetic conditions across the first year of the pandemic in the UK. They highlight that the experiences of parents were not pandemic-specific, and will continue to be highly relevant in a non-pandemic context. Future support should to be tailored to the needs of families and implemented across diverse future scenarios to promote coping and positive wellbeing.

Background: The impact of the COVID-19 pandemic on the wellbeing of parents and children in the general population has been well-documented. This study investigated wellbeing in parents of and children with rare neurogenetic conditions, who may have been at greater risk of negative impact on mental health and behavioural challenges during the first UK lockdown. Method: An online survey data was completed by parents of children with a rare neurogenetic condition between May and July 2020 (CoIN sample; N=123) and compared to responses from parents of children in the wider population (Co-SPACE sample; N=2121). Measures of wellbeing included the 21-item Depression, Anxiety and Stress Scale for parents and the Strength and Difficulties Questionnaire for child behaviour. Results: Parent anxiety was significantly higher in CoIN (MedianAnx = 4) than Co-SPACE (MedianAnx = 2). Parent-rated internalising, externalising and impact of child behavioural difficulties were also significantly higher in CoIN (MedianInt = 9.5; MedianExt = 11, MedianImp = 8) than Co-SPACE (MedianInt = 6; MedianExt = 7, MedianImp = 1). Only group differences in child behaviour and impact remained significant when matching for demographic factors and were also larger than previously reported pre-pandemic differences. Discussion: Families of children with rare neurogenetic conditions reported poorer wellbeing during the first lockdown compared to the wider population, affecting both parents and children. This likely reflects pre-existing complex needs, which should be prioritised during future national crises. Investigation of changes in wellbeing in this population over the course of the pandemic is warranted.