Transitioning to adult care

Getting ready

Moving to a new adult health-care team can give your teen mixed emotions, including excitement, fear, relief or sadness. They have likely become familiar with the hospital and staff, and they have developed a routine around their health care. When making the switch to adult care, it can help if your child knows more about how things will work as an adult patient.

A time for transition

What is transition?

Transition means moving from one life stage to another. It involves change and adapting to change, which can be exciting but sometimes scary. The best way to deal with any transition is to plan ahead and be prepared. Preparing your child for a transition involves helping them learn, in advance, the skills that they will need to succeed in a new life stage.

During the teen years, your child will go through a number of transitions. They will transition from high school to higher education, or to the world of work. They will also experience health-specific transitions; for example, being on treatment to being off treatment, being off treatment to attending follow-up care, stopping one medication to take another, etc.

When will my child transition to adult care?

One very important transition for your child will be the move from receiving their health care in a paediatric centre to receiving it in either an adult centre or from their primary-care doctor. This move is known as a health-care transition and usually happens around the time that your child turns 18, when they are legally considered an adult. There is no set age for this transition; so if your child is still in active treatment when they turn 18, they may be able to finish their treatment with their paediatric team. Your child’s health-care team can talk to them about the health-care transition and help them get prepared.

Your child will still get care after they no longer go to their paediatric centre; it will just be in an adult hospital, adult clinic or from a primary-care doctor instead. Your child’s paediatric health-care team will recommend and refer your child to where they should be going to continue their care, and the health-care team will arrange for the transfer.

The health-care providers your child sees will be used to working mostly with adults. Adult hospitals are used to treating patients who are already familiar with managing their own care, so it is very helpful by this point if your child knows the basic information about their health history, such as their diagnosis and any ongoing health problems that they may be experiencing. At first, your child’s adult health-care provider may need to do some tests that were already done at the paediatric clinic. This is necessary so that they can get to know your child and become familiar with their specific health-care needs.

Why does my child have to transition to adult care?

Your child’s paediatric health-care team is made up of doctors who specialize in children’s and teens’ health. As they become an adult, your child’s health-care needs to change and will be better met in a hospital or clinic for adults, or in a primary-care doctor’s office. Continuing your child’s care is very important because they may need special follow-up care as they continue to get older.

Advice from other parents

It can take time for your child to develop confidence in a new health-care team, especially if the environment is different than what they are used to. Encourage them to keep an open mind. Remember that different does not mean worse!

What is an adult care centre like?

Like some other teenagers, your child may be excited about their move to adult care. Or they may be nervous to leave the paediatric team that they have gotten to know so well. Both reactions are normal. Preparing your child to know what to expect can make their transition smoother.

• Adult centres usually do not have the same bright colours on the walls, or games and things to do in the waiting rooms.
• Most of the other patients in adult care will be much older than your child.
• If your child needs to stay in the hospital, they probably won’t have their own room, unless your or their health insurance can pay for it.
• If your child is staying overnight, prepare ahead and make sure your child brings along things to entertain themself, especially if they know in advance that they are going to be admitted.

What are the similarities between paediatric and adult care?

Both paediatric care and adult care are focused on health. Helping your child stay as healthy as possible is the primary goal.

What’s the main difference?

The main difference is in the focus of care:

• Paediatric care is family-centred. You may have been with your child during appointments and involved in making decisions about their care.
• Adult care is patient-centred. This means your child (the patient) gets to take a lead role in making decisions and managing their health. They are empowered to take care of themselves. While this may be a bit overwhelming for your child at first, it’s a great opportunity for them to start gaining some independence.

Your child’s health-care provider will expect to hear from your child and will ask them questions directly. Your child may be expected to attend appointments on their own, but they can request that a family member or close friend come in with them for support.

How can I prepare my child for the transition?

Your child is the most important part of the team

Your child is the best person to look after their own interests. They need to learn how to be in control of their health and personal life goals. If your child knows what they want to do with their life, their health-care team can help direct them to the best treatment plans to meet their goals.

Transition takes time, so it is best to start as early as possible. Your child’s health-care team will help them. You can help your child prepare for the transition by encouraging them to:

• get to know their treatment history and be able to give a three-sentence summary of their health
• practice self-monitoring (paying attention to their body) and describe their symptoms in appointments
• manage their medications, schedule appointments, and make healthy lifestyle choices
• answer questions in appointments; be involved in decision-making; and, over time, spend part or all of their appointments alone with their health-care provider
• start learning about their health insurance and the types of treatments it covers

Many teenagers and young adults feel better knowing they are in control. Helping your child learn the skills to help with this process can take time; but, in the end, these skills can help your child achieve their goals for the future.

Some teenagers find it easier to have a checklist of tasks or goals to help prepare for their health-care transition. To determine when your child is ready to transition, fill out a transition readiness checklist.

The three-sentence health summary

In an adult centre, your child will be expected to describe their health history in a quick phrase (about three sentences long). It can help your child to have some practice with this.

Your child’s three-sentence health summary includes the following information.

• Sentence 1: Age, diagnosis, and brief health history
• Sentence 2: Their treatment plan thus far
• Sentence 3: Questions or concerns to raise during the visit

You child should write out these three sentences and practice with the health-care providers they see most often. Their health-care providers will help make sure they’ve got all the details correct. If your child’s health-care providers suggest adding or changing anything, be sure your child writes these suggestions down. After your child gives their summary, they should expect their health-care provider to ask them more questions. This does not mean that they have missed information, just that the person is being thorough.

If you usually do the talking during appointments, let your child know before the appointment that they may want to practice giving their health summary and answering questions by themself.

Here is an example of a health summary:

Self-monitoring

Even if your child will not be receiving treatment in adult care, it is important they continue to pay attention to their body. They are often the first person to notice changes to their body. When your child practises self-monitoring, they have a better chance of noticing a problem sooner. This means that your child can then share the problem with their health-care team. When a problem is spotted early, there is usually a better chance of finding a solution.

Medications

• Have your child keep a list with names and dosage amounts of their medications, including vitamins, supplements and over-the-counter medications.
• If your child is put on a new medication, have them write it down on the same list as their other medications.
• Before their appointment, have your child check their prescriptions for the number of repeats. If they only have a few repeats, make sure they ask their doctor for a refill prescription.

Making and keeping appointments

In adult care, the responsibility to make and keep appointments lies with your child, the patient.

• Make sure your child keeps track of their appointments (phone, agenda, calendar, etc). If they miss an appointment it will be their responsibility to call the clinic and rebook. This is different from many paediatric clinics, where they will call you or the family if your child misses an appointment.
• If your child realizes an appointment time is not convenient for them, it is their responsibility to book a new appointment time.
• Have your child make a list of all the team members at the clinics they visit. Your child should know their names, their roles, and how to contact them.
• Have your child talk to the person in charge of scheduling appointments if there is more than one health-care provider that they would like to see on the same day.
• Encourage your child to think about how they will be getting to their appointments and make sure they give themself enough travel time. For example, they should find out how they will get there, and where the building and clinic is located.

It can be helpful for your child to consult this appointment checklist before every appointment.

Tips for talking with the doctor

Your child’s doctors, nurses and social workers have a very good idea of what will help with your child’s transition to the adult health-care system. Talking to these people can help your child prepare for this change. Sometimes, it can be hard for your child to talk with them, especially if you have traditionally done the talking for them.

Here are a few tips to help your child better communicate with their doctor and health-care team:

• Your child should ask questions. There’s no such thing as a stupid question.
• When your child does not understand something, they should ask to have it explained to them again.
• When the need need help, they should ask someone they trust.
• Encourage your child to be honest and say what they think.
• Have your child write down what was said during an appointment so they will remember what happened.
• If your child has questions after their appointment, they should phone their doctor or nurse to make sure their questions are answered.
• Start your child’s visit without being in the room with them. This way, if your child has a private matter to discuss, they can do it then and you won’t be asked to leave the room.
• Have your child ask their doctor to explain everything to them. Make sure that your child understands all the benefits and possible complications of their treatment plan.
• Make sure that your child is comfortable with the plan. Remember, it is their body. If they have any concerns, they should tell their nurse or doctor. This will help your child’s health-care team to find the best treatment plan that works for your child.
• Your child should follow-up after two weeks if they have not heard about things that were discussed during their visit: test results, referrals, or new tests bookings.

Health insurance

You have probably paid for your child’s medicines either through your health insurance or by filling in forms that will help get government coverage. As your child gets older, they will need to consider how they will become responsible for paying for their own medications. For example, if you have insurance and your child stays in school, their medicines will usually be covered only until they are 25 or are finished full-time studies, whichever happens first.

If your child needs to apply for government funding for medications, they will need to show they qualify every year by filing an annual income tax return. It is a good idea for your child to get familiar with income tax returns, so they should start doing these when they are 16.

This website from the Canadian Revenue Agency has more information about how to complete a tax return. You can also talk to your child about how to file income tax.

Transition programs

Some hospitals have special staff, clinics or programs that help teenagers develop the skills they need to prepare for a health-care transition. Your child’s paediatric team may be able to arrange for them to meet their new adult provider, or have a tour of the clinic, before their first appointment. You or your child may also be able to arrange for a tour of your child’s new clinic or hospital yourselves.

Continued care is important

Once your child turns 18, they can no longer be admitted to paediatric care overnight or use the emergency services. Talk to your child’s health-care team about the best place to go for urgent care or emergencies while your child makes their transition.

People with chronic health conditions stay healthier if they have lifelong follow up. It is important for your child to keep in contact with their primary-care provider regularly (at least once a year—even when they are healthy).

Your child may also have questions about becoming an adult with a chronic condition.

Some common concerns are:

• Relationships and sex
• Family planning: contraception, planning a healthy pregnancy/fathering a child, parenting options
• Health insurance (to pay for medications and personal care supplies)
• Post-secondary education
• Working
• Managing finances (income supports, funding)
• Moving out on their own
• Where to get community supports and services

These questions and concerns are normal. Encourage your child to discuss them with you or their health-care team.

Final tips for transitioning to adult care

GLADD

• Give information — Make sure your child knows about their medical history and current medications. Have them tell their team what works best for them.
• Listen to the suggestions — Your child’s new team knows a lot about adult health care.
• Ask questions — Have your child write questions down before their visit so they don’t forget. If they don’t understand something, they should ask for an explanation. There are no silly questions. They should get all the information they need.
• Decide on a plan — Have your child choose a plan that is good for their health and works best with their lifestyle—for school, work and socially.
• Do it — Encourage your child to get involved with their own care. They should continue to take their medications and attend their medical appointments.