A Smooth Move
Transition. Moving from the pediatric CF clinic to the adult clinic. The mere mention of transition conjures up all kinds of dreams and demons, not only for the CF patient, but for parents, too.
On one hand, the medical move denotes your child's independence, responsibility and adulthood, all things that thrill parents – especially CF parents.
On the other hand, it means new doctors, less input for mom and dad, and decisions about self-management resting in the inexperienced hands of someone who, just yesterday (or so it seems), was learning how to ride a two-wheeler with training wheels.
Adding to the stress of transition is the apparent lack of nationwide uniformity when it comes to moving over to adult CF care. There appear to be as many ways to transition as there are CF clinics. Some clinics are set up so that the patient remains with the same CF nurses, but simply changes doctors, while others call for the teen or young adult with CF to move to another facility completely. One thing is certain, however. Your health care team has a system set in place, and can tell you what to expect in your own clinic. Your job then becomes helping your son or daughter during the process.
Following your lead
Although it may feel as if everything you say to your teen goes in one ear and out the other, in fact, when it comes to CF care transition, teens frequently take their cue from mom and dad. If you don't support the transition procedure, you could actually sabotage the process for your 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, however, that your child shares many of the same misgivings about the transition process, including:
- Fear of the unknown
- Worry that transition between clinics will affect care
- Sadness over leaving a longtime health care team
- Apprehension about building trust with a new provider
One of the best ways to help your child prepare for transition is to stay informed. Here are some questions you may want to ask your teen's current health care team as you both approach the age of transition:
When? At what age will transition start? The answer to this varies depending on the health of the patient, your clinic's normal procedures, and the emotional needs of your child.
How? Ask your child's provider how the transition process will unfold; keep asking until you have the details your family needs in order to feel informed. Who? Who will be the adult health care providers? Ask to meet the new team that will take over the care of your teenager. Where? Where will you go for your first appointment? Request a tour of the facility.
Open communication: Keep the communication flowing between your family and your child's health care teams, both pediatric and adult, throughout the transition period.
Your role in helping craft a smooth transition for your teen is a bit of a dance between hanging on, instructing, and letting go. Knowing when to do each is an art in and of itself, not unlike parenthood as a whole.
- Langton Hewer SC, Tyrrell J. Cystic fibrosis and the transition to adult health services. Archives of Disease in Childhood. 2008;91.10:817-821.
- Tuchman LK, Slap GB & Britto MT. Transition to adult care: Experiences and expectations of adolescents with a chronic illness. Child: Care, Health and Development. 2008;34.5:557-563.