Transferring from pediatrics into the adult medical system is a big step for families who have children with special needs. The medical care models are very different. Even prepared parents and young adults express shock at how different the two systems are. It’s like jumping into a cold swimming pool. You might be mentally ready for cold water because you dipped in your big toe, but when you jump in, there’s still a shock to your system. Some people appreciate the shock and call it “invigorating” while others can’t wait to jump back out at the first possible chance!
Here are some comments from adults with cystic fibrosis about their experiences with transitioning from pediatrics to adult-oriented medical care:
I had a hard time at first transitioning from the pediatric to the adult clinic because I find it really difficult to adapt to new doctors. It didn’t last long before I felt comfortable with my adult doctor because naturally, there are more adult health concerns that need to be discussed and somehow it’s just easier talking to an “adult” doctor about “adult” problems. The one main difference I noticed from the pediatric clinic is that the doctor I switched to is more blunt, to the point, and speaks directly to me. One of my parents has always come with me to clinic but once I was transitioned, my parents stopped coming in to see the doctor with me. They would still take me to clinic but they just stay in the waiting room. When they were in the room with me, it seemed as though the doctors forget I’m there. They would talk about me to my parents, I never felt like I was being addressed. They way I’m spoken to in the adult clinic is very different… because apparently they think once you’re 21, you don’t want to talk about your “poops” any more. – female age 21
In my personal opinion, the courtesy with the patients changes. They assume that because people are older, they can handle the info that’s given to them with no problem, which I agree to a certain extent; but what they’re forgetting is normally it’s bad news and is still a lot to take in for some people. MY advice… stay a kid. – male age 25
Was I ready? I think as far as being in control of my own heath I was. I was 19 when I transitioned to the adult clinic. I was pretty independent; I was living on my own, engaged, going to college, etc. But the reality of insurance and bills still wasn’t there. I learned pretty quickly how to manage the medical bills and how to understand insurance. The pipe dream of going to college full time and working part time was just that. There would have been no way to afford insurance working only part time. How is it different? I think I have to be more aware of my own health and speak up when something is not right. – female age 23
The transition from the Ped’s to the adult clinic is all going to depend on the medical team and the patient. I think I’m healthier than most CFers so I was less dependent on the Ped’s clinic which really helped with my transition. I went to school with another CFer and CF had a major impact on her. She actually passed away about a year ago. I know that she had a very difficult time transitioning from the Ped’s to adult. I think it is all very situational. – male age 25
I transitioned at 16. My pediatricians had prepared me for the transition. They always talked directly to me. At the age of 12, I would go to the exam room by myself and mom would stay in the waiting room. They wanted me to learn how to interact with doctors and advocate for myself. I think they did a great job. Honestly, when you are an adult, you need to see a doctor who is used to dealing with issues that adults face. – female age 40
This small sample demonstrates that there can be a wide variety of transition/transfer experiences. The quality of this experience has a critical impact on how young adults adapt to dealing with their healthcare choices that can span across their lifetime.
Interestingly, research shows that parents have a harder time with this process than their adult children with special needs. Being well-prepared will help young adults and their parents to have a successful transition/transfer experience.
So, this is what young adults have said about why transition matters. Watch for our next posting where we’ll discover what the professionals say, or visit our previous article about what a transition is.