ABSTRACT
AimsThe UK has faced 3 major lockdowns since March 2020 due to the pandemic, affecting access to education, healthcare provision and social activities. Children with Down Syndrome are more likely to have chronic health conditions and require developmental support, therefore are more likely to be impacted by healthcare delays and the move to remote services. Childhood is a crucial time for social, physical, and emotional development so 2 years of disrupted support will have had life-long consequences. This survey aimed to determine the impact of the pandemic on children under 11 with DS in the UK.MethodsThe survey was split into 6 categories: Demographics, Education, Healthcare provision, Physical health, Mental health, and Behaviour. Parents/carers gave feedback during the survey development. The questions were inputted into REDCap survey software on a secure server and all data was anonymously submitted. The survey was circulated using a digital snowballing technique through social media and email. Charities and support groups were contacted and asked to share the survey. Valid response percentages for each item were calculated and presented below.ResultsThere were 241 responses from caregivers across the UK between 25thOctober 2021 and 14th February 2022 (England 79.5%;Scotland 18.5%;Wales 2.9%;NI 2.1%). The children were primarily White (n=215) and male (Male: n=124;Female: n=117).Parents believed that remote learning had a negative impact on children with DS. 51% (n=53) of parents of children who continued school online felt that their child did not progress with their learning and 83.8% (n=88) felt they were missing out on key learning activities. 84.3% (n=129) believed that missing out on after-school activities had a moderate-large impact on their child and 59.8% (n=143) of parents believe that the lockdown has caused their child’s social skills to deteriorate.Healthcare/therapy provision was a large concern;89.8% (n=211) had appointments delayed and/or cancelled, while 43.6% (n=17) of those awaiting surgeries had them cancelled due to COVID and another 43.6% (n=17) were delayed. 57.1% (n=20) of those parents were worried about their child’s health as a result and 34.2% (n=78) of parents saw a direct increase in health issues.Parents saw a change in their child’s mental health and behaviour. 68.7% (n=161) of parents believe that their child’s emotional wellbeing had deteriorated, with the number of children presenting with signs of aggression often/almost always increasing from 4.3% (n=10) to 20.9% (n=48) and those crying often/almost always increasing from 2.5% (n=6) to 19.9% (n=47). As such, 77.8% (n=159) said the pandemic made the family dynamic more strained/stressful.ConclusionDespite parents reporting that 58.2% (n=139) of their children were ‘seemingly unaware’ of the pandemic, it has nonetheless had a clear negative impact on their health, development and quality of life. Conducting qualitative interviews with families would provide a deeper insight into the lived experiences of the children during the pandemic and help to develop a tailored and targeted approach to support parents/carers and their children moving forward.