PARENTS/CARERS (Front page of parent/carer page)
As a parent, you might have started thinking about your adolescent preparing to move into
the adult hospital. Many parents have lots of questions and concerns about this process, as
it can be both an exciting and anxiety-provoking time. It’s important as the parent or carer
that you talk to your child’s cardiac team early so that you and your child can learn about
ways to help you both prepare for the transition.
Developmentally, adolescents will start making their own decisions – good and bad – about
their health care. Involving the adolescent in a structured transition process like CTT
concentrates on all aspects of their life and guides and supports them and support in their
decision making influencing their long-term wellbeing.
For Parents and Caregivers of Adolescents with cognitive impairments or developmental
delay
For adolescents who have cognitive impairments or developmental delay, parents/carers
play an ongoing role in supporting adolescents in managing their healthcare needs into
adulthood. In these situations, skill development remains important and this includes long
term planning and ongoing support for the adolescent and their families by connecting with
appropriate allied health both in hospital and in the community. Many of the suggested
resources and links provided are for adolescents who will one day manage their own health
care, but these can be adapted to guide adolescents, parents/ carers and clinicians.
Here is a guide to help you supporting you’re adolescent in their transition process.
You are able to access some valuable education material to support you and your
adolescent including:
1. Checklists
2. Factsheets
3. Self-referral form
4. Ready to Go booklet
5. Useful links and websites
6. Contact information
Transition – the basics for parents and carers
CTT will start preparing your child for transition from about the age of 12. Working closely
with your child and their team will help you understand the process and ensure that both
you and your child are ready for the move. The move may seem a while away but it is
reassuring to know that the earlier everyone is prepared the easier it will be.
Your child is currently being cared for in a family-child-centred setting. Through the
transition process they will slowly be prepared to get adjusted to caring for their own health
care needs and moving towards the more independent-focused adult health setting.
We’ve prepared a fact sheet for both you and your child to help you understand the process
and the importance of all working together to support your child. Take time to read through
the factsheets and don’t hesitate to contact your child’s team with any questions.
Phases of transition
The steps or phases of transition are used as a guide for moving your child forward. Please
be reassured that your teen will be moved through each phase based on their individual
needs.
The checklists are used by the Transition Lead to help them identify any issues or goals that
your child needs to address, meet or set. Sometimes, if a deficit is identified, the Transition
Lead may make a referral to another healthcare professional such as an occupational
therapist to help them meet a goal or address any issues.
Tip 1: From early on, encourage independence and knowledge. Talk to your teen about
their condition and how it has been managed.
Tip 2: Be familiar with the checklists and factsheets and work through them with your child
Tip 3: Be aware that you are also a part of the planning process. If you think your teen
needs some extra help speak to their team.
Tip 4: Strive to develop a trusting and open relationship both with your teen and their
team. You can also ask for help!
Healthcare Skills Checklist 1
Working through the checklists with your teen and the Transition Lead is a very useful way
for all of you to help build your child’s confidence and independence.
Ensuring your child knows how to keep track of appointments, know about their medical
and surgical history and GP’s details are just a few skills that you will all work on so that your
adolescent will one day become independent in looking after their health.
As a parent/carer it is just as important that you encourage your adolescent and help build
their independence including;
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Encouraging them to know about their cardiac condition including their medical and
surgical history, their medications and treatments
Encourage your teen to be as normal as possible. For example, encouraging them to
get involved in a sport or an activity at school such as debating. These activities are
all important in building your teen’s self-management skills, independence – vital for
health adult development.
Be flexible, patient and understanding
Encourage them to speak up about their needs
Remember, your teen is watching you, be a good role model. Get to appointments
on time and follow up on any identified issues.
Healthcare Skills checklist 2
Differences in care - paediatric and adult hospitals
Start talking to your teen early about which adult service they will move to. Moving from
the Paediatric hospital can be a scary thought for both you and your adolescent but making
sure you are successfully linked in with an adult hospital for ongoing monitoring and care of
your heart condition is important.
Your teen has to prepare emotionally for the move but they also have to prepare
themselves for the logistical changes such new clinicians, a different journey, finding a new
place to park, taking a different bus and working out where the outpatient department is
located. This can be made easier if everyone involved is prepared for the move such as
driving to the hospital to get them familiar with the new journey. Downloading a copy of
the factsheet ‘Difference in Care’ is a good start.
We’ve made a useful brochure called “getting ready to go” that you can access and work
through with your adolescent. This brochure will give you a better understanding of what to
expect in the adult healthcare setting and help you both prepare for the transfer.
Here are some useful tips on supporting your teen as they prepare to move;
Tip 1: Encourage them to spend time alone with their doctor or nurse.
Tip 2: Respect their privacy and understand when they want to have confidential discussions
without you present
Tip 3: Help them understand how risky behaviour such as drinking can affect their health
(look at the useful links site) or encourage them to talk to someone about it
Tip 4: Encourage them to organise their own appointments
Tip 5: Help them find a GP they feel comfortable talking with.
Tip 6: Encourage them to know about their condition including surgery they have had or
why they take certain medications
Building independence and knowledge
Before your teen moves to the adult service they will complete a self-referral letter. This
letter demonstrates the teen’s skills and knowledge and identifies areas that may need
further development.
Encourage your teen to fill this out by them self - it helps them demonstrate their
independence and maturity and helps you let go.