Rare neurogenetic conditions and mental health of families during COVID-19

Abstract

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.

Experiences of parents of children with rare neurogenetic conditions during the COVID-19 pandemic: an interpretative phenomenological analysis.

“…Our theme related to the impact on child wellbeing is consistent with previous findings from both quantitative and qualitative studies of children with rare neurogenetic conditions (6,7), as well as children with SEND/ND without a specified cause (12,16,18,20,22,29,30), and children in the wider population (31,32). For example, in this study parents reported increases in anxiety-related and autistic-like behaviours in response to pandemic-induced changes.…”

“…Recent quantitative work suggests that the pandemic has had a detrimental impact on the mental health and wellbeing of children with rare neurogenetic conditions in the UK (6,7). For example, in our own work, we demonstrated that children with rare neurogenetic conditions experienced higher levels of internalising and externalising difficulties during the first UK lockdown, and that these difficulties had a significantly greater impact on daily functioning when compared to children in the wider population (6).…”

“…Similarities in patterns of observed emotional responses and behavioural changes across children during the pandemic, suggests that these are potentially normal responses to challenging circumstances. However, subtle differences and the magnitude of responses might vary between subgroups of children, such as those with SEND/ND (6,31,33) or mental health difficulties (34). As such, future research should establish what the specific similarities and differences in the impact of the pandemic are between different groups of children by reviewing available quantitative and qualitative literature.…”

“…We conducted a semi-structured interview study with parents of children with rare neurogenetic conditions as part of the CoIN study (6). Ethical approval was granted by the Psychiatry, Nursing and Midwifery Research Ethics Subcommittee, King's College London (Ref: HR-19/20-18544).…”

“…Recent quantitative work suggests that the pandemic has had a detrimental impact on the mental health and wellbeing of children with rare neurogenetic conditions in the UK (6,7). For example, in our own work, we demonstrated that children with rare neurogenetic conditions experienced higher levels of internalising and externalising difficulties during the first UK lockdown, and that these difficulties had a significantly greater impact on daily functioning when compared to children in the wider population (6). We also observed the effect size of these differences were greater than those reported in independent studies prior to the pandemic, highlighting the profound impact of the pandemic on emotional and behavioural difficulties, and daily functioning in children with rare neurogenetic conditions.…”