Following Your Lead
Although it may feel as if everything one says to a teen goes in one ear and out the other, in fact, when it comes to CF care transition, teens frequently take their cues from mom and dad. The bottom line? If parents don't support transition, they can actually sabotage the process for their child.
It's not unusual for parents to have mixed feelings about a child's upcoming switch to an adult provider. It may help you to know that other parents share your concerns and, in fact, your child has many of the same misgivings about the transition process, including:
- Fear of the unknown
- Worries that waiting for the new doctor or clinic to “get up to speed” will affect care
- Apprehension about having to build trust with a new provider, while leaving behind a health care team that feels like family
The cystic fibrosis medical community, including researchers studying transition, recognizes that the process needs more structure and standardization. In the meantime, however, you have a teen that needs your help and support in order to come of age within the existing CF health care system.
As you assess how best to give your child a hand, here are some common issues you may want to discuss with your teen and his or her health care team:
- What can we expect? Ask your child's provider how the transition process will work, and keep asking, until you have the details your family needs in order to feel informed.
- When can we expect it? The age at which a patient transfers from pediatric to adult health care varies, depending on the health of the patient, your clinic's normal procedures, and the emotional needs of your child.
- Meet the new team: Ask to meet the new doctor or team of health care providers who will take over care of your teenager. Give your child an opportunity to meet privately with the adult provider.
- Take a tour: Ask for a tour of the new clinic or office.
- Open communication: Keep the communication flowing between your family and your child's healthcare teams, both pediatric and adult, throughout the transition period.
At some point nearly every CF patient will transition to adult care, and for good reasons. Young adults have age-appropriate concerns – some physical and some psychological. Moving from the care of pediatricians who have known them, many times, since they were in diapers, is an important step in becoming independent adults. It marks the time when they are, finally, in charge of their care, their lives, and their futures.
The question you have to ask yourself is: Are you ready to take the training wheels off, let go, and watch them fly?