Helping your teen with special health needs move to adult care
The transition to adulthood is a major life process for young people, which for many, includes a change in their health care system. For youth with chronic health conditions, this change can cause a range of feelings 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, who can be difficult to leave behind.
Most Canadian children’s hospitals have an age by which patients need to move on, usually between 16 and 18 years. 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?
- 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 health care. Offer support.
- Encourage your teen to develop a relationship with her family doctor before she has to leave the paediatrician—the earlier the better. In some communities this may mean seeking out a family physician to assume general care.
- Plan to attend appointments with your teen, but let him lead the appointment. This process will help him develop the confidence to talk to you and his health care providers, and to make decisions affecting his health. You can participate by listening and offering your support and opinion when appropriate.
- Your teen’s health care teams should all be part of the discussion. Each can provide resources to help with the transition. Ask for books, newsletters, magazines and good websites that deal with youth health issues and information on living with your teen’s health condition.
- Help your teen understand his health condition and reasons for treatment. Have open discussions about his illness and how he can fit his health needs into everyday life situations. For example, having to take medications at school, or exercising while at a friend’s house.
- Let your teen meet her health care professional on her own for part of the appointment. 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.
- Help your teen find information about the things any teen may need to know, including information about resources in your community that provide services related to sexual health, drug and alcohol use or misuse, emotional counseling and educational/career planning. The general pediatrician or family doctor may provide some of these services. In some communities these services are also offered through community clinics.
- Teens will sometimes need counseling to help them through the transition. Some also benefit from peer support groups. Speak to your teen’s doctor about your options.
- It is normal for all teens and young adults to wonder about things like their future ability to become pregnant or have healthy children. These questions can be even more important for teens with special health care needs. Assist your teen in bringing up these issues with their doctor, or asking about whether genetic counseling is appropriate.
- There are many computer “apps” that can help people with special health needs track and manage their conditions. Encourage your teen to explore the Internet for options or ask health care providers for their recommendations.
- 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 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 have a healthier transition into adulthood.
More information from the CPS:
Reviewed by the following CPS committees:
- Adolescent Health Committee
Last Updated: October 2014