Helping Adolescents with TBI Transition to Independence

Dr. Juliet Haarbauer-Krupa talks about her research working with teens with TBI and their parents on readiness for transition to independence.

See more video clips with Dr. Haarbauer-Krupa.

[Dr. Juliet Haarbauer-Krupa] I'm principal investigator of a pilot study looking at readiness for transition across complex medical conditions—that includes traumatic brain injury. And what we learned from that—we gave surveys to parents and teens and asked them to rate teen behaviors on readiness for transition. We also use that measure in the program—we use a format of it. We asked them to identify barriers to medical adherence. We asked them if they felt that taking care of the complexity of their medical condition— what is that complexity and how does it affect their life? And we learned some very interesting things. We learned that teens' perceptions of their ability to take care of themselves and their independence is very important for sticking to their medication regimen. They have to feel that they are involved in this. We also learned that, in our setting, transition is talked about way too late at 17 and 18 years. If you have your medical condition before you go to high school, that's when it should start, educating teens about their condition and letting them know what they have to do to take care of their condition. In the summer program for teens with TBI, we created a measure called "Readiness for Independence," and we have 30 specific behaviors—we're just field testing it— that include: "Do you attend your IEP? How do you get yourself from place to place? Do you prepare meals? Do you take medication? Do you know about your insurance?" One of the benefits from administering that to parents and teens is parents will say, "Oh, I have some ideas on what they could do to take over their care." For example, they could call in their refills for medication because I will know if it didn't get called in when I go to pick it up. So that kind of understanding about what specific behaviors are is very helpful and how to let teens gradually take over parts of their care, which is especially important after an injury. They may not have had medical needs before. They now have medical needs.
Posted on BrainLine July 2, 2013.

Produced by Victoria Tilney McDonough, Justin Rhodes, and Lara Collins, BrainLine.