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 providers. For youth with chronic health conditions, this change can cause a range of feelings from fear and worry to uncertainty or excitement.

Some children, teens and their families have spent years receiving care from paediatricians and/or pediatric specialists and healthcare 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 old. The process of getting ready for this change should start early and continue even after your teen starts to see their new doctor or health care team. By talking with your teen about this transition early, you will help them see it as a normal, expected part of life.

It will be important for your teen to understand that they can develop a trusting relationship with their new adult health care provider. By working together, you can encourage your teen to take a more active role in their care and understand how to use their new health care services. It is also important for your teen to learn how to manage their 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 or teen's developmental stage. Parents are more intensely involved in decision-making when the children are young, with teens being gradually more involved as they mature. It also typically includes a team of professionals who each provide specific expertise.
• Adult care tends to be more 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 is often 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 their health care. Encourage them to practice doing more on their own and offer support.
• Encourage your teen to develop a relationship with their family doctor before they have to leave their 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 them try to lead the appointment and spend time with their health care providers alone. This process will help them develop the confidence to talk to you and their health care providers, and to make decisions affecting their 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 their health condition and reasons for treatment. Have open discussions about their illness and how they can fit their 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 their health care professional on their own for part of the appointment. Teach them the skills they need to talk openly with their new doctor and let them know that they 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 confidential 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 often need extra support, counseling, and education to help them through the transition. Some also benefit from peer support groups. Speak to your teen’s doctor about 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 “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 copy of a transfer letter that summarizes their medical information, current health status, and goals of care. This will help your teen plan visits to their new doctor.

With proper planning, education and practice, your teen will be better able to get the health care they need and have a healthier transition into adulthood.