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 and gain independence in managing their own health care.
Birth to 3 years of age
General
- Learn about the members of your child’s health-care team. Become part of the team.
- Take breaks to renew your energy.
- Remember your child’s condition is not who they are; expect them to change and grow.
Social
- Encourage your child to play with others.
- Consider playgrounds, community activities and early years centres.
- Connect with other families and consider joining support groups in your area or through the internet.
Self-care
- Set a routine for your child. For example, establish bedtime habits.
- Expect your child to participate in self-care activities, such as brushing their teeth, if they are able.
- Set limits for your child to develop positive behaviour.
- Praise your child and reward positive behaviour and being co-operative.
Education
- Be honest when explaining a procedure to your child, even if it will hurt.
- Talk to your child about clinic visits ahead of time and bring a favourite toy for comfort.
- Tell all caregivers about your child’s condition and any special needs.
Medical
- Keep your child’s immunizations up-to-date and don’t forget to keep a record.
- Use play activities and books to talk to your child about their condition.
- Apply for a Trillium drug plan or other sources of applicable funding. If you need help, ask to speak to a social worker in your program.
- Schedule regular visits with your child’s family doctor or primary-care nurse practitioner.
- Keep a record of your child’s condition, treatment, and medications.
- Plan ahead for travel. Have enough medication/formula and, if flying, get a travel letter explaining any special requirements.
4 to 7 years of age
General
- Give your child choices so they can learn to make decisions.
- Be consistent so your child knows the consequences of their behaviour and choices.
- Prepare your child for appointments and new experiences by using creative play acting or drawing.
Social
- When your child visits friends, give parents a basic understanding of your child’s condition, if necessary.
- Celebrate your child’s achievements.
- Encourage participation in school, various activities such as sports and music, and play with peers.
Self-care
- Teach your child personal information, such as their home address and phone number, and how to call 911.
- Gradually increase your child’s involvement in their own self-care.
- Assign your child more responsibility, such as setting the table and cleaning up after themselves.
Education
- Ask your child’s health-care team about the need to discuss your child’s condition with their school.
- If your child has difficulty with school or in social settings, consider speaking to your child’s primary care provider about seeking a formal educational or behavioural assessment.
- Speak to your child’s teacher or principal to request an educational assistant, if required.
Medical
- Ensure that your child knows the name of their condition.
- Teach your child about symptoms related to their condition that need to be shared with an adult immediately.
- Ask your program’s child life specialist about the use of puppets, dolls, and play to promote a positive hospital experience for your child.
8 to 11 years of age
General
- Encourage your child to express their needs and wants.
- Support your child’s increasing need for independence and responsibilities.
- Talk to your child about the effects of smoking, drugs, alcohol and inactivity.
Social
- Encourage your child to make friends with children around the same age as them.
- Support your child’s continued involvement in activities to develop their interests.
- Coach your child on how to talk to their friends about their condition.
- Ask your child about teasing and bullying.
- Encourage your child to speak to somebody they can trust if they are having trouble with their peers.
Self-care
- Prepare your child to perform activities, such as taking their own medications, when visiting with friends.
- Promote healthy eating and encourage your child to participate in meal planning and preparation. Use this time to teach your child about any dietary restrictions that may accompany their condition.
- Involve your child in routine care associated with their condition. Use correct medical names and set goals for more independent care.
Education
- Keep track of your child’s progress in school. If your child is having difficulties meeting expectations, seek help from guidance counsellors or teachers.
- Set homework time and encourage independence while also being available when your child needs you.
- Talk to your child about what they want to be when they grow up.
- Have your child practice using age-appropriate websites together with you.
Medical
- Help your child to learn more about their condition, such as the names of medications and treatments. Use reading materials and pictures to help increase their knowledge.
- Make a list of questions and concerns with your child before their appointments.
- Encourage your child to speak directly to team members for part of their appointment.
- Understand how your child’s condition will affect the way they develop through puberty.
- Have your child select a Medic Alert identification to carry with them.
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.
At SickKids