The Suitability of Discharge Information for Parents of Infants with Single Functioning Ventricle Heart Condition: Evolution of a Congenital Heart Assessment Tool (CHAT) for Parents

Abstract

Whilst advances in the care of infants with complex congenital heart disease (CHD) have resulted in remarkably improved prognosis, death between first and second surgical stage has remained a concern in the UK and America particularly for those with single cardiac ventricle anatomy.1-8 This has prompted the development of home monitoring programs (HMP) to encourage early identification at home, of infants vulnerable to potentially life threatening events4, 5 ,9-13. However to date no randomised controlled trials have been published and therefore the robustness of the available research is debatable. In 2011 a research proposal was developed by KG (Coventry University) in collaboration with the team at Birmingham Children’s Hospital and Little Hearts Matter (LHM) to undertake a Feasibility Study (randomised controlled trial) to test the feasibility of using a Congenital Heart Assessment Tool (CHAT) as part of a home monitoring programme (HMP) for infants with single ventricle heart conditions and those with systemic shunt dependent heart conditions. A consultation event [funded by a Patient and Public Involvement (PPI) Bursary from the NIHR West Midlands Research Design Service ]was hosted by LHM in September 2011 during which a Focus Group was facilitated by KG with a small group of parents to ascertain their views regarding the implementation of a home monitoring programme. The Focus Group was transcribed, thematically analysed and subsequently contributed to the development of the content of the online survey and the Congenital Heart Assessment Tool (CHAT) which is being reported in this poster presentation