Co-Designing Neurodevelopmental Models of Care With Five Australian Paediatric Cardiac Services for Children With Congenital Heart Disease

Abstract

Introduction: Children with congenital heart disease (CHD) are at elevated risk of neurodevelopmental delays and learning and behavioural difficulties. The recently published Australian National Standards of Care for Childhood-onset Heart Disease include neurodevelopmental care (Standard 9) as a key priority area. The MRFF funded CHD LIFE+ study is a five-year mixed methods program of research aiming to co-design sustainable models of care to support long-term neurodevelopment for children with CHD in Australia. Methods: A novel approach to ensuring that the overarching national CHD LIFE+ study is locally relevant across jurisdictions involved the commissioning of five local paediatric cardiac service-led 12-month projects. Local projects have been designed with the intention of addressing local gaps in knowledge, while simultaneously informing the broader national approach to improve neurodevelopmental models of care for children with CHD and their families. Results: Engagement with national partner investigators facilitated the development of five unique project plans. While project aims and approaches vary across jurisdictions, audit and implementation cycles are common. Projects are focused on each jurisdiction’s local priorities and contexts, including capturing information to better understand current practices and family perspectives, while also supporting the overarching objectives of the CHD LIFE+ study. Conclusion: These locally focussed projects within the larger national program will provide insight into local challenges for implementing long-term neurodevelopmental care across the Australian healthcare system. Projects are also promoting inter-jurisdictional engagement and findings will support co-design of locally optimised models of care.