This is Blog #3 in our Transition series. The last blog discussed what patients have said about their transition experience. This week we'll discover what the medical professionals have to say.
Current research shows that an organized, methodical approach to transition is crucial. A. Kennedy et al. states: "Increasing evidence shows that adverse health consequences occur when inadequate transition arrangements are in place. Poor transition processes are increasingly recognized to have a significantly negative effect on morbidity and mortality in young adults."
Research also shows that starting the transition process early is essential. Research by Hewer and Tyrrell recommends that a formal "transition process should start from 11 to 13 years of age."
Unfortunately, this isn't happening in a majority of cases (in the cystic fibrosis community). In 2008, research of 87% of all US CFF-accredited programs shows that: "Although transfer of care in CF occurs at a median age of 19 years, initial discussion of transition does not occur until a median age of 17 years, leaving a limited amount of time for patients, families, and care teams to delineate and foster key self-care skills. In fact, an international survey of individuals with CF found that only 10% reported introduction of the concept of transition before the age of 15 years." (McLaughlin et al.)
Researchers may recommend that the formal transition process start in the preteen years but child development experts recommend that a developmentally-based transition process ideally starts much younger.
Preschoolers can learn to label medical equipment, body parts and medications. They can help count out pills, push buttons on medical equipment, and answer basic questions about why they take medication. In our Transition Blog #1, we showed a simple transition plan for PKU starting at about age four.
Children in elementary school can start to take the responsibility for some aspects of their care with the watchful support of adults. Examples for cystic fibrosis might include independent management of pancreatic enzymes, initiating breathing and chest therapy treatments, and cleaning and properly storing medical equipment. These are all examples of transition tasks that can be, and should be, purposefully shifted much earlier than the preteen years.
Transition is a cumulative process meaning that all of the little things we do over the years as a parent will "add up" and help our children be ready (as young adults) to successfully move into the real world. For our children with special healthcare needs, this includes the adult medical system.
Clearly this is a critical area that needs to be addressed by both parents and medical professionals. As parents, we must be proactive about initiating an effective transition process with our child even if our medical clinic lacks a formal one. So let's discuss the transition experience and examine ideas about how it can be most effectively accomplished from a parent's point of view.
The transition process really consists of two parts: the shifting of medical tasks and the shifting of personal responsibility in general. There is certainly some overlap but the personal responsibility piece encompasses a whole lot more than the medical tasks.
Generally speaking, if a child is responsible around schoolwork, chores, money, and basic self-care issues (like personal hygiene), then the child will be responsible around the medical tasks as well. This is great news for us parents because general personal responsibility can be learned much earlier than medical tasks and around less risky issues.Parents must focus their attention on two primary areas: Responsibility Training and Medical Task/ Disease Knowledge. We will discuss these important areas over the next few weeks with this blog series on transition.
Foster W. Cline, MD is a child psychiatrist and co-founder of Love and Logic®. Lisa C. Greene is a parenting educator and mom of two children with cystic fibrosis. Together they have written the award-winning book “Parenting Children with Health issues." For free audio, articles and other resources, visit www.ParentingChildrenWithHealthIssues.com.