As your teen begins their journey to transition to adult care, this can raise fears and anxieties around the change in your role as a carer and your teen’s ability to cope with the new responsibility placed upon them.

Adolescence is a challenging time with major social, lifestyle, health, emotional, educational and career challenges for the teen to deal with. To support your teen through this period your role will need to shift from manager, to a more hands off, supportive and guiding role. This will help them gain independence over these life challenges, including their own healthcare management.

As a carer of a young person with childhood-onset heart disease, you will have had to manage and navigate the complex care of your child and the healthcare system. By utilising this knowledge and gradually passing the baton to your teen you will help to empower them to take this next step into the adult health care system with confidence.

Transition of care programs aim to help your child learn the skills needed to look after their own care as they make their way to independence. Importantly, this journey will happen with their most valuable mentor – YOU!

Sharing the expertise you have gained over the years around your teen’s health is invaluable as you coach them towards self- management of their health. Becoming an educator and integral support to your teen during transition will provide change and new challenges for you in your role as a carer. As you go through this significant change in your role it is important that you also look out for your own mental health and seek support if needed.

You are not alone in having concerns and worries about your changing role during transition from paediatric to adult health care.

It is essential that you look after your own mental health and well-being as you adjust to your new role. Below are some practical ways to help you cope with this new role.

• If you are feeling uncertain, sad or anxious about your change in role it is important that you let your child’s healthcare team know as they can help answer your questions and settle your worries – this can be at any time during transition.
• If you are finding coping with the new role really challenging they can help to arrange a counsellor to support you and help you work through your worries.
• Your GP is also another great source of support and can help you find solutions and cope with any problems that emerge. A GP can provide you with information and give you a referral to see a psychologist or other therapist if required. They can work with you to create a Mental Health Care Treatment Plan which can even give free access to services.
• Remember if your feelings change and you need support at any time, it is important to reach out for help.
• By sharing this exciting part of your child’s journey as their mentor you will find new purpose and not only help them to transition to self-management but also transition yourself into a new phase of your relationship, building mutual respect and trust.
• Another great way to help you understand your new role is to reach out to others who have gone through the same experience. Support groups and support services can help link you up with others so you can learn from their experiences.

We provide access to support services within the CoHD community and can help connect you with others who are on or have recently been through your journey.

Beyond Blue also provide mental health support, information and resources online or by phone. It provides online chat, online forums and a 24/7 Helpline you can call on 1300 22 4636.

Carers Australia provide short-term counselling and emotional and psychological support services for carers and their families in each state and territory.

You can call their hotline on 1800 242 636.

For Aboriginal and Torres Strait Islander People Well Mob has a collection of social, emotional and cultural wellbeing online resources.

This fact sheet was reviewed and updated by HeartKids in March 2024. 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.