Moving to adult health care: transition phases
You, your child and your health professionals need to think about transition from the time your child is diagnosed through to when your child reaches her mid-20s.
There are three transition phases:
Early: this is from the time of diagnosis to when your child is 12 years old. During this time, your child has ongoing care from your GP or paediatrician, other child specialist services or hospitals.
Preparation: this is when your child is 12-16 years old. During this time, your child might start to visit adolescent clinics. You’ll also start to talk about transition and draw up a transition plan. And your child will start to spend some time alone with health care professionals.
Active: this is when your child is 16-19 years old. In these years, you’ll be supporting your child to develop self-management skills. He’ll spend more time alone with health care professionals. You might have joint consultations with child and adult teams. You’ll be working towards a set transition date.
Download a printable transition checklist (PDF: 77kb) to help you and your child navigate the transition phases to adult care.
Health care for children with chronic health conditions and disability is usually family focused – that is, it looks at your child’s needs in relation to your family’s needs and circumstances. Adult health care tends to be more patient focused, looking just at the individual patient’s needs.
Successful transition to adult health care: what it looks like
Your preparation and planning will help your child make the transition smoothly.
You can look for the following things in a successful transition:
- Your child’s health care teams encourage and help your child gain personal independence and develop ways to manage her own care.
- You, your child and your health professionals work together on a written transition plan, which should be in place by the time your child is 14.
- Transition planning should happen as part of your child’s ongoing health care. For example, as the transition date gets closer, you’ll have consultations with both the paediatric and adult health care professionals.
- Your paediatric health professionals should let you and your child know about the best adult health care providers for your child.
- Your paediatric health professionals should send all relevant paediatric medical information to the adult health care professionals.
- You should have a health care worker who supervises the transition.
I want to go to an adult hospital, because they’re actually going to talk to me and not my mum, and not treat me as a child. That’s what I want.
– Young person
During and after transition: what to expect
Moving to adult health care is a big and sometimes challenging change. Transition affects everyone – your child, you as parents, your immediate and extended family, other carers and friends.
Although adult health care services might seem hard to work out at first, it won’t always be like that. Usually teenagers quickly get used to a different way of doing things.
If your child has had regular care from a children’s hospital, the paediatric service will ideally arrange the initial referrals and appointments to specialists in adult hospital services. In the lead-up to the transition date, the paediatric teams might also set up joint meetings between themselves, the adult service, your child and you.
Your child might also have individual appointments with the new health care teams before the formal transfer to adult health care services. Visiting the adult health care service while your child is still going to the paediatric service can help with any worries that you or your child have about the transition.
Some adult health care services have young adult health clinics to provide a gradual transition. Some states and territories have transition care coordinators in paediatric hospitals or regional teams. They can help you and your child understand your child’s future health care needs and how to navigate adult health services. They can also be good people to talk to about your concerns.
Your child will have a wide choice of health care professionals in both public and private health care. If you choose private adult health care services, your paediatrician or other child specialist will recommend adult specialists. To make the transition smoother, try to make at least one appointment with the new adult specialist while your child is still seeing the paediatrician.
With the children’s hospital you’re used to them doing everything for you and all of a sudden, now you’re going to the adult hospital. You’ve got to do a lot of it yourself and it’s just a shock.
– Young person
Adult health care services: what to expect
Adult health care services are different from paediatric services.
One of the big differences is that adult health care services operate separately. That is, they don’t tend to have the team-based approach of paediatric services.
This means that your child will need to be actively involved in his own treatment and know his own medical history. You can help your child by talking together about this before and during transition. You could also help your child write up a medical history form (PDF: 41kb).
If your child needs to see several specialists, she’ll need a referral for each one. Your child will need to keep up to date with her referrals too. GP referrals usually last only a year, although you can get referrals that last longer.
Your child will need to organise specialist appointments himself. The appointments might be at different locations and times, and the services might be less flexible about changing things to suit your child.
There might be extra costs and charges for medication or equipment, because paediatric services are usually more subsidised.
At Children’s I had one main person who organised all my tests – told me to go here and there. But with the adult hospital now, I’ve got to see many different doctors … and have different appointments.
– Young person
Your role during and after transition
You still have a big role as your child moves to adult health care. But depending on your child’s care needs, your role might change from giving primary care to giving emotional support and guidance.
Your child will need your help with things like:
- learning how to interact with medical staff
- understanding the adult health care system
- developing skills for managing her own health care.
You might also need to coordinate your child’s care until your child can take full responsibility for it all (if this is possible for your child). With your continued support, your child can learn to manage it himself.
Some parents find this change hard. They can feel ‘left out’ as medical staff focus increasingly on their child and ask for her opinions. It’s not unusual to feel anger, guilt, injustice or despair at this time.
Looking after yourself will help you cope. It can help to be part of a support group, talk with family and friends or see a counsellor or other health professional.
Your other children might also need extra support at this time too.
Although it might be a challenging time for you and your family, it’s also a time when you can all celebrate your child growing more confident and independent.