Educational Experiences of Children with Congenital Heart Disease

• Research type

  Research Study

• Full title

  Educational Experiences of Children with Congenital Heart Disease

• IRAS ID

  334380

• Contact name

  Frank Casey

• Contact email

  frank.casey@belfasttrust.hscni.net

• Sponsor organisation

  Queen's University Belfast

• Clinicaltrials.gov Identifier

  N/A, N/A

• Duration of Study in the UK

  0 years, 8 months, 2 days

• Research summary

  Congenital Heart Disease (CHD) is one of the most common types of birth defects and affects around 1 in 100 babies born in the UK. Over the past 50 years, there has been a significant increase in survival rates of CHD with current outcomes after paediatric cardiac surgery over 98% 30-day survival and more than 97% of children with CHD expected to reach adulthood. However, a considerable body of international evidence exists demonstrating the consistently poor educational outcomes faced by children with CHD. This study aims to explore the challenges the child deals with in the early years at school and also the concerns that parents might have at this time.
  Our goal is to use the information to identify the key issues we need to focus on in our research to provide the necessary support to children, parents and teachers to make the educational experience for our children with CHD the best it can be, thus improving educational outcomes.
  We aim to conduct one-to-one or joint interviews (lasting approximately 30 minutes in duration) with parents of Children and Young People (CYP) with CHD (aged 5-17) as well as children and young people with CHD (aged 11-17). We will use this information to develop interventions designed to support teachers and help children and young people with CHD get on better at school. The research is being funded by the Department of Health NI. Those eligible to participate will be invited to take part by a consultant paediatrician at Clark Clinic outpatients, Royal Hospital Belfast for Sick Children.

• REC name

  HSC REC B

• REC reference

  24/NI/0042

• Date of REC Opinion

  1 May 2024

• REC opinion

  Further Information Favourable Opinion