For Youth and Families
Our goal is to help patients and their families feel prepared for the transition from SickKids to the adult health care systems by the time patients turn 18. For most young people, being prepared means gaining the necessary skills and knowledge to look after their own health.
Some of the skills include:
- Advocating for themselves (or through others) and learning how to ‘speak up’ about issues
- Taking on more responsibility and leadership for one’s own health – this might include tasks such as taking medication the right way, following up on recommendations from health-care providers and taking action when unexpected symptoms appear
- Accessing health care appropriately – for example, by learning how to book appointments, contacting the pharmacy for refills and showing up to appointments on time
We believe that children and youth with chronic health conditions or special health care needs can gain skills to help them manage their health now and in the future. Our work is based on a Shared Management Model. This model suggests that over time young people can and should slowly take on more and more responsibility for their own care with the help and guidance of their health-care providers and caregivers. Check out the link to the Shared Management Model to learn more and download a copy.
A Note for Parents and Caregivers of Youth with Cognitive Impairments or Developmental Delay
For patients who have cognitive impairments or developmental delay, caregivers play an ongoing role in supporting youth to manage health care needs into adulthood. In these situations, we believe in maximizing the skill development for youth by connecting families with the appropriate community resources for long term planning and support. While many of our resources outlined in this section are for youth who will typically one day lead their own health care, we are developing resources specifically for caregivers of youth with developmental disabilities. See the Complex Care Resources section for more information.