As your child gets older, they will begin taking more responsibility for their own health care in preparation for transitioning to the adult health-care system. 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 for a transition involves learning, in advance, the skills that your child will need to succeed in a new life stage.
Below are some recommendations for helping your child navigate their way through the health-care system as a teenager and gain independence in managing their own health care.
12 to 15 years of age
General
Encourage your teen to:
- Ask questions, talk about their needs and how they feel about their condition with you and their health-care providers.
- Talk about body changes and sexuality with someone they trust. Look into what the Teen Clinic at SickKids has to offer them.
- Find role models they can relate to and look up to.
- Find people they can trust to help them learn to manage their condition.
- Practice budgeting and banking skills.
Social
Encourage your teen to:
- Join teams and clubs at school or get involved in activities such as camps and community programs.
- Hang out with friends.
- Learn to plan ahead for being away from home by preparing any medication or equipment they might need to take with them.
Self-care
Encourage your teen to:
- Set up their own routines, such as taking medications and telling you when they are running out.
- Keep track of their prescriptions, test results, procedures, and appointments with help from you and their health-care team.
- Learn about their community and find resources related to their condition.
- Talk to their health-care team about any special considerations if they are thinking about learning how to drive.
Education
Encourage your teen to:
- Learn and practice explaining their medical condition to teachers, camp counsellors and nurses who need to know.
- Develop a three-sentence summary, which 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
- Talk about their career interests and begin to set goals for after high school.
- Take part in meetings about their education.
- Get to know their school guidance counsellor.
Medical
Encourage your teen to:
- Increase their knowledge of their condition and understand reasons for tests, procedures and medications.
- Ask for private time with their health-care provider for part of their visit. They should prepare questions and concerns they want to discuss.
- Talk with you and their health-care team about birth control, drugs, alcohol, and changes related to their condition as they grow.
- Discuss their future care in the adult health system.
16 years and up
General
Encourage your teen to:
- Think of themselves as a role model and a mentor to younger children.
- Learn about the impact of their condition on sexual health and reproduction (for example, sexually transmitted infections, protection and genetics).
- Celebrate their “graduation” to adult care.
- Ask for their SickKids graduation certificate.
Social
Encourage your teen to:
- Look for young adult support groups in the community.
- Continue to participate in activities at school and in their community.
- Talk to their partner about their health condition if they are dating.
Self-care
Encourage your teen to:
- Take charge of preparing and taking any medications or treatments on their own.
- Plan ahead to fit their daily care into their schedule so they can hang out with friends, participate in sports and clubs, and attend school.
- Keep track of their appointments with an agenda or their cell phone.
Education
Encourage your teen to:
- Look for volunteer or part-time job opportunities.
- Go for career counselling, shadow someone at their job, attend a job fair.
- Speak to their health-care team about scholarships that may be available through their program.
- Register with the Office of Special Accommodations/Disability Office/Access Centre on campus if they are planning to go to college or university.
Medical
Encourage your teen to:
- Explain their condition and special health-care needs to others on their own.
- Take part in health-care discussions with their health-care team.
- Make a plan for how their medication and treatments will be paid for in the future, as some insurance plans or payment programs end at age 18.
- Visit an adult care facility and connect with others who have already made the transition to adult care.
- Know their prognosis and future care plans.
As your child grows, continue with the suggestions from earlier years and add new activities and responsibilities as appropriate. Consider your child’s unique developmental course and use this as a guideline.