Congenital heart disease is estimated to be the second most common chronic illness globally. In New Zealand it affects almost 500 babies every year. In addition, rates of acquired heart disease such as rheumatic heart disease are also high, predominately affecting Māori and Pacific Island populations, and those living in low socioeconomic areas of the North Island. Advances in surgical intervention and wrap around care has meant there is a growing population of young people and adults living with congenital and acquired heart disease. To ensure these individuals develop the ability to self-manage their chronic illness as they move through their cardiac journey, they must be provided with the knowledge and skills to do so. The aim of this project was to explore how healthcare providers from a paediatric cardiology outpatient department, prepare children and young people for self-management of their chronic illness.

Rosswurm and Larrabee’s (2009) model of evidence-based practice change provided the framework for this project. Through observing healthcare professionals in the clinical setting and reviewing best evidence literature there were six key areas of cardiac health information that were identified and should be discussed at an outpatient clinic. They were recognised as being important in maximising health and well-being and supporting self-management in paediatric cardiology. The delivery of these should be multimodal, delivered in a developmentally appropriate manner and time, ensuring that the child, young person, and their family have understood and can build on the information delivered to them.

The project allowed the opportunity to reflect on our current practice of delivering health information to support self-management. Key recommendations were identified which included having a nurse specialist present in the outpatient clinic, consistent use of multimodal cardiac and health information strategies and the development of an interactive app or passport for cardiac children and families that incorporates the many facets of their cardiac journey.

It also highlighted potential research for the future that would explore the experiences of health education among children, young people with congenital and acquired heart disease and their families, as well as their perceptions of preparedness for self-management.