Defining Successful Transition: Parent Perspective
By the time parents have to face health-care transition for their adolescent or young adult with special health-care needs (AYASHCN), they have been managing the health and well-being of their AYASHCN for years. They may come to medical transition exhausted and discouraged from struggling with their child’s many issues, such as setting up helpful school programs, social activities, insurance, funding, and therapies, as well as the underlying fear of what will happen to their child after the parents are gone. Many do not want to think about finding a new adult medical team until they are forced to make a change.
Parents depend on medical professionals to guide the way. We may be the experts on our child but not on their medical care. Unfortunately, we usually learn that our youth will need to transition to adult care while talking with other parents rather than health-care providers.
Parents and physicians should discuss medical transition long before it occurs. They should work together when the child is a preteen and prepare the youth to start making their own decisions, if able, or identify others to help them if they are not. The AYASHCN (and helpers) should be educated on medications, making and participating in appointments, knowing the dynamics of their special health-care needs, and identifying the precursors of a medical crisis. Teamwork between medical professionals and families is required to move successfully and seamlessly from pediatric to adult health care.