The impact of COVID-19 on children born with a cleft in the UK

Background/Purpose: Covid-19 has impacted on the delivery of health care and education to children. Those with underlying medical conditions, including children born with clefts, are particularly vulnerable. During the lockdown period in the United Kingdom, some interventions were delivered using remote methods and other innovative ways. Nevertheless, delays in surgery and other treatments may have increased anxiety in parents and children and adversely influenced outcomes. Previous reports show that children born with clefts typically perform worse on measures of educational attainment relative to their peers. During the pandemic, home schooling replaced conventional teaching and it is not yet known what impact that has had specifically for children born with clefts. The primary aim of this study was to determine patients' and families' views of cleft care and educational support received over lockdown. The secondary aim was to identify how the well-being of children with cleft was affected during this period. Methods/Description: The cleft collective study is a large prospective longitudinal UK cohort study of children born with cleft lip and/or palate available as a resource to researchers. To date, the study has recruited over 9000 participants from over 3000 families. Children within the study are now aged between 0 and 15. The Cleft Collective recently invited parent participants to complete a questionnaire about the impact of Covid-19. A mixed methods approach was used to address the study aims. Free-text data from the questionnaire was used to undertake a thematic analysis on responses to questions about interventions received, delayed treatment, educational support, and more general questions about Covid-19 and lockdown. Data on the child's emotions and worries were collected retrospectively for the first (complete) and second (partial) phases of lockdown. The emotions and worries data were analyzed using a repeated measures technique for the 2 different time periods. Data were also compared as independent groups, to identify which characteristics helped children cope better during lockdown. Results: Over 1100 families responded and preliminary analysis has identified several themes from the data so far. These include both negative and positive experiences of participants during lockdown. The data also highlight the concerns of parents, especially with regard to delays in receiving face-to-face speech and language therapy. Analysis is ongoing and will be reported in full at the time of the presentation. Conclusions: In conclusion, this study provides real-time data to cleft clinicians and education providers highlighting parental concerns and interventions that have gone well. The results provide important information for cleft care in the event that further lockdowns are imposed. The study findings also identify which groups may need additional support with regard to a child's well-being and anxieties. Future analyses will determine the impact of the pandemic and associated lockdown on longer term outcomes.