The transition to adulthood is a major life process for young people which includes a change in their health care system. For youth with chronic health conditions, this change can cause many feelings ranging from fear and worry to excitement.

Some children, teens and their families have spent years receiving care from paediatric health teams. They may have developed strong bonds with health care providers which can be difficult to leave.

Most Canadian children’s hospitals have an age by which people need to move on, usually between 16 and 18. The process of getting ready for this change should start early and continue even after your teen starts to see his new doctor or health care team. By talking with your teen about this transition early, you will help him see it as a normal, expected part of life.

It will be important for your teen to understand that she can develop a trusting relationship with her new health care provider. By working together, you can encourage your teen to take a more active role in her care and understand how to use her new health care services. It is also important for your teen to learn how to manage her condition on a day-to-day basis.

What is the difference between paediatric care and adult health care?

The main difference is how health care services are provided.

• Paediatric care is family-focused, with care suited to your child’s stage of development. It involves parents in decision-making and usually includes a team of professionals who each provide specific expertise.
• Adult care tends to be patient-focused. Patients are usually independent and make their own decisions. Although there is a place for family members in this system, support, decision-making and family involvement may be different from paediatric care.

What should I do to prepare my teen?

• Have a positive attitude. If your teen sees the change as a step forward, like a graduation from paediatric care, the change may seem less scary.
• Your teen should gradually become more responsible for her own health care. Offer lots of support.
• Plan to attend appointments with your teen, but let him lead the appointment. This process should continue and will help him develop the confidence to talk to you and his health care providers, and to make decisions affecting his health.
• All of your teen’s health care team should be part of the discussion (former and current). Each can provide resources to help with the change. Ask for books, newsletters, magazines and good websites that deal with youth health issues and information on living with your teen’s health condition.
• Encourage your teen to develop a relationship with her family doctor before she has to leave the paediatrician—the earlier the better.
• Help your teen understand her health condition and reasons for treatment. Have open discussions about his illness and how he can fit his health needs into his everyday life situations. For example, having to take medications at school, or exercising while at a friend’s house.
• Let your teen meet on his own with his health care professional. Teach her the skills she needs to talk openly with her new doctor and let her know she shouldn’t be afraid to ask questions. When you are all in a meeting, let her run the meeting by asking and responding to questions. You can then participate by listening and offering your support and opinion when appropriate.
• Help your teen find information about the things he will need to know as an adult, including information about community health clinics that provide services around sexual health, drug and alcohol addictions, genetic counseling, and educational and career planning.
• Sometimes teens will need counseling to help them through the change. Some also benefit from peer support groups. Speak to your teen’s doctor about your options.
• It may be helpful to ask your teen’s doctor for a transfer letter that explains the location of the new facility and what to expect. This will help your teen plan her visits to her new doctor.

With proper planning, education and practice, your teen will be better able to get the health care he needs and will help him keep healthy habits into adulthood.

More information from the CPS:

• Transition to adult care for youth with special health care needs, a statement of the Canadian Paediatric Society

Other resources:

• Good 2 Go – Good 2 Go Transition Program, The Hospital for Sick Children www.sickkids.ca/good2go
• Health Care Transitions – Institute for Child Health Policy, USA. http://hctransitions.ichp.edu/
• Healthy & Ready to Work: A Transition Service for Youth. Maternal and Child Health, USA www.hrtw.org
• SibKids and SibNet – Sibling Support Project www.siblingsupport.org/
• Kids Can Cope – Adaptation to Childhood Chronic Illness, The Hospital for Sick Children www.sickkids.ca/kidscancope
• Ability OnLine Internet community for kids with chronic conditions. www.ablelink.org
• Youth in transition, Alberta Children’s Hospital.

Reviewed by:
CPS Adolescent Health Committee

Last updated: December 2008