Prepping for College
Transitioning Your Teen to Self-Care
If you are one of the growing numbers of CF parents preparing to send a teen off to college, congratulations! Before you do, however, experts in the area of CF transition encourage you to teach your child self-management of the disease and its treatment.
The majority of adults with CF agree. In fact, more than 85% of adult patients say thay should start the move into self-management earlier.1 Joan, a 49-year-old living with CF says the real transition to an adult clinic begins years earlier, when parents teach their children how to be responsible for their own care. Joan offers today’s parents her firsthand insight into transition.
“I hate to tell you, but the switch doesn’t get flipped at 18 and suddenly you’re independent,” says Joan. She recommends parents help children by gradually giving them greater responsibility for maintaining their health, one step at at time. “It makes it a lot easier when (the responsibility) doesn’t come over in one…big ball that says, ‘I’m a CF burden.’” Joan also advises parents to encourage their teens to speak up at doctors’ appointments in order to gain confidence as advocates for their health. It’s a step that helped her gain confidence as a patient.
“My doctor would say to my mother, ‘How is Joan feeling?’ and my mother said, ‘Well, I think she’s fine, but why don’t you ask her? She’s sitting right next to me,’” laughs Joan.
After Joan learned to drive, the girl’s mother handed her the keys to the car and told her, from that day on, Joan would now drive herself to the doctor. The move instilled in the teen a deep sense of responsibility that has served her well over the years.
As any parent of a teen with CF knows, however, that there are always pitfalls and potholes on the road to self-management.
Susan, a CF parent, traveled that bumpy path with her now 28-year-old daughter, Amy. Today, Amy sports two undergraduate degrees and an MBA from USC. Susan credits those accomplishments to Amy’s ability to take over her own treatment prior to the start of college, a step that came at mom’s insistence.
“I couldn’t follow her around for her whole life. So, once she was 18, it was up to her,” says Susan. “If she was going to stay healthy, she needed to do her medicine.”
Susan began the transition to self-management when Amy was barely a teen. She gave her daughter the opportunity to order her own prescriptions, make her own doctor’s appointments, and go to clinic appointments solo. She also let Amy’s physician in on the new plan.
“I called the doctor and I said, ‘From now on, I’m going to drop her off,” remembers Susan. “I’m not going to go in to the appointments with her.’” To be safe, Susan kept a close eye on Amy’s attempt at self-management, ready to step in and help should it be necessary.
While Mom remembers all the ups and downs of Amy’s transition, she gladly lives with the pay off — and so does her daughter.
“She’s just lived longer, stayed healthier, been more motivated, and done so much better at taking care of herself than I just would have ever imagined,” says Susan with a smile.
1McLaughlin S, Diener-West M, Indurkhya A, Rubin H, Heckmann R, Boyle M. Improving transition from Pediatric to Adult Cystic Fibrosis Care: Lessons from a National Survey of Current Practices. Pediatrics. 2008;121;e1165 DOI: 10.1542/peds.2007-2217