Transition from Pediatric to Adult Care
Oftentimes as caregivers, we take on the responsibility of caring for every aspect of our transplanted child's life. We feel it is our duty to ensure the transplanted organ will last as long as possible, so we remind our children to take their medicine, do their lab work, and go to follow-up appointments to ensure their organ stays healthy. It is important to remember that eventually, our children will become adults who care for themselves. For this reason, we must gradually give them the tools they need to care for their physical, emotional and financial adult selves. This transfer of responsibility is important in what is called transition and transfer of care. Many hospitals start this process when a transplanted child turns 10-12 years old. Ask your child's clinicians for more information about their transition program. You can also reference these helpful resources.
Adolescent Health Transition Project
Developed by the state of Washington, this website is a resource for teens and young adults with special health care needs, chronic illness, and physical or developmental disabilities. It contains helpful checklists and forms.
American Society of Transplantation
While not specific to transplant, this includes a list of many articles and resources written about transition of health care.
An organization dedicated to helping children and caregivers transition from pediatric to adult care in a variety of situations. The website contains helpful assessments that the child and the caregiver can take to determine what information needs to be shared with the child in order that she can manage her own healthcare.
My Health Passport
A project of the Sickkids Good 2 Go Transition Program, the MyHealth Passport is a customized, wallet-size card that gives you instant access to your medical information.
Use this free tool to create a free "health passport" containing important medical information to be shared with your healthcare provider.