CONNECT (Compassionate Online Navigation to Enhance Care Transitions) is a program that helps young people with disabilities as they move into adulthood.
Young people with disabilities that started in childhood often need ongoing healthcare to stay healthy as they grow into adults. They face special challenges when moving from care for kids to care for adults. In Canada, this change happens when they turn 18 and doesn’t take into account whether the young person is ready to manage their own care. Some studies have shown that young people with disabilities feel like they are suddenly taken out of pediatric care and thrown into adult care without enough help to prepare for the change. Experts agree that the process should start when kids are around 12 years old to help them learn how to manage their care gradually. One solution suggested by experts is to create a virtual peer support program designed with input from young people and their families to help make the transition to adult care easier.
The first version of the CONNECT program was made for youth ages 18-29. It helps them set goals to live more independently and do well in their community. Participants, called mentees, work with a Peer Navigator who helps them reach these goals.
Our current research is working on creating a similar program for younger kids, ages 12-17, who are getting ready to move into adult care. We want to learn what young people with disabilities and their families expect when moving from pediatric to adult care. We also want to understand how they think about compassion and how online support from peer mentors can help with transition. Participants are asked about how they understand compassion, their expectations about moving from kids' rehab to adult rehab and community care, their experiences with transition planning, and how virtual peer support could help make the transition easier and provide compassionate care.