Turning 18 means many things: the right to vote, buy a lottery ticket, join the military, and even go skydiving. That transition into independence gives freedom, but also newfound responsibility. When it comes to navigating the medical system with a child with a demanding disease, most parents are pros at so many different skills. As the youth transition into adulthood and begin to take care of their own medical needs, the hand-off can be tricky.
The Child Neurology Foundation (CNF) has published a reminder for us: “Young adults with neurologic conditions are turning 18 — and that’s something not even a global pandemic can put a stop to. These teens will continue to transition from pediatric to adult healthcare.”
To help manage the healthcare transition as teens become adults, CNF has published the “Transition of Care Toolkit”, which identifies the potential difficulties of this maturation and gives guidance on the many facets of this life-phase change. The toolkit is designed to guide youth through the many conversations that come with adult neurological care, and encourage goals and expectations of the coming years.
This guide goes through a variety of organizational tools that outlines specific questions that patients and their parents should ask themselves and create plans for. This includes check lists and quizzes for patients and their parents to help them express or define their expectations for their youth’s medical independence. Questions include whether the patient knows their medical needs and care plans, if they can take medicines without help, and communicate independently with their doctor. It has charts to help plan goals that ask for possible hindrances, actions, target dates, and more.
Taking care of intensive medical needs includes a whole host of skills and can be extremely tricky. For young patients who are beginning to take responsibility for more of their needs, guidance and planning can help ease the nerves and organize the families understanding of what will be changing.
For further guidance on the transition from CNF medical experts Dr. Ann Tilton and Dr. Christine Baca, click here.