Navigating your teenage years can already be both exciting and daunting. When combined with the experience of living with a childhood or congenital heart disease (CHD), this period of your life can be filled with significant changes that bring unique challenges. HeartKids understands this journey is lifelong, which is why our organisation is dedicated here to help make the transition from childhood to adult care as smooth as possible.
What Is Transition?
Transition is the process of developing the skills you need to manage your life and health care more independently. More freedom will be provided to make decisions that were once the responsibility of your parents or older guardians. The actual transfer from childhood to adult care occurs approximately when you turn 18, but that doesn’t mean you can’t start getting ready before then.
Health care transition is an integral part of your CHD journey as the team that treated you during childhood usually only specialises in caring for children. This means that when you become an adult, you will be treated by doctors who are trained in caring for adults. This new care team will be able to answer any new questions and address any concerns that arise when transitioning into adult healthcare.
How To Make The Transition?
We know that becoming independent as you grow older can be a challenging prospect. That’s why it’s important to remember that you don’t have to face this change alone. Your friends, family, care team and HeartKids are here to support you every step of the way. Transition is also not an instant change. It’s a gradual process that can be broken down into stages, with new responsibilities slowly being introduced. The key stages are:
- Introduction Phase (12-15 years old) – This stage will introduce you to the concept of transition. You may learn more about your specific CHD condition and how to start managing it.
- Preparation Phase (15-18 years old) – You will apply your new knowledge and start practising care tasks independently during this period. This can include beginning to keep track of your medical records, learning about confidentiality, taking medication by yourself and going to some of the doctors without your parents.
- Transfer Phase (18-19 years old) – It’s time to meet your new adult care team and move into the adult healthcare system. This new team will be ready to support you during this entire process and ensure that you feel prepared to transition completely.
We have a handy Transition Readiness checklist that you can also use to track your progress during these changes. In addition, HeartKids has partnered with an app development company to create an app called UpBeat. This has been designed to help young people manage their health information as they become more independent and connect with peers in the CHD community.
Staying Healthy As You Become An Adult
Living with CHD doesn’t have to hold you back from living the life you want. However, it may require building a plan that fits your situation and ensures you stay healthy. For example, while exercise has several benefits for many people living with CHD, it’s essential to talk to your doctor or care team beforehand about the physical activities that you can perform. HeartKids provides a collection of CHD resources for young people that offer information related to travel, sex, alcohol, energy drinks and other key topics you may be wondering about.
Support For Transition
The period between adolescence and adulthood can be a challenging time for people impacted by CHD. That’s why HeartKids is dedicated to helping young Australians receive the best possible support as they transition from children to adult healthcare.
For more information about growing up with CHD, read our fact sheets on transition care and our teenager’s guide to CHD. Also, feel free to contact the HeartKids Helpline anytime or download the UpBeat app for a helpful tool to manage your transition.
References
- ROYAL CHILDREN’S HOSPITAL MELBOURNE (2021). “Information for young people transitioning from paediatric to adult health services.” Retrieved July 2023. Available: Online.
- Jackson, J., Gerardo, G. & Vannatta, K. (2017). Perceptions of Disease-Related Stress: A Key to Better Understanding Outcomes Among Survivors of Congenital Heart Disease. Journal of Cardiovascular Nursing, 32(6): 587-593.
This blog uses information from a fact sheet that was reviewed and updated by HeartKids in March 2021. It was endorsed by our Clinical Advisory Committee at the time of publication. Clinical information might change after this date. The information in this fact sheet is general. It is not a substitute for medical advice from your doctor. Always talk to your doctor about matters that affect your health.