Healthcare Transition: Jim's Story
JIM:
I just have always liked flying and airplanes and the freedom that it kind of gives you when you are up in the air and not connected to anything and completely in control of where you are going and what you are doing. I'm naturally independent, so I think that natural independence kind of filtered through to everything I did, not just regarding my health care, but everything.
NARRATOR:
Jim is typical of many young adults. He's a recent college graduate. He has a new job and he's chasing his dream of a career in aviation. Jim also has a chronic illness called cystic fibrosis. Along with the many changes that come with independence and adulthood, Jim is also facing changes in his health care. Transition; change is never easy, however, this process is usually more difficult for young adults with special health care needs who have been receiving care from specialized pediatric treatment settings and providers. We're going to look at how Jim and his family prepared for health care transition and their current efforts to complete the process. Jim, cute and cuddly as a baby could be. But as the weeks passed, Jim wasn't growing as expected and was hospitalized.
DONNA (JIM'S MOM):
Jim was diagnosed when he was three months old, and a month or two after the diagnosis, when we were in for the clinic visit, Dr. Rosenberg asked me; "where do you want Jim to be in twenty years?" And I can remember being puzzled by that question.
BEN (JIM'S DAD):
The long-term future wasn't exactly where you're initially focused. You are trying to understand, what is this that we're dealing with?
DONNA (JIM'S MOM):
He suggested that I think about what I had wanted prior to Jim being diagnosed with C.F. and I said well really, you know, we all, we wanted all of our kids to go to college. And he's good, that's a good place to start.
DR. ROSENBERG
It's important to refocus them as soon as possible to, hey, even though we got this as a diagnosis, what are we going to do about it and let's move on and let's do everything possible to allow this child to reach his or her greatest potential.
DONNA (JIM'S MOM):
It really gave us something to think about in terms of the future and to start planning for the future.
NARRATOR:
Future Orientation: Envisioning a future for your child is a critical first step for a successful health care transition.
DONNA (JIM'S MOM):
Children, particularly when you start young, they take a tremendous amount of pride in being able to answer their own questions, to be knowledgeable about their own healthcare. When you're two and a half and three years old, you're just very pleased with yourself that you can answer questions that maybe you've heard Mom answer before but now it's your turn.
DR. ROSENBERG
Jimmy Olsen has cystic fibrosis, not Mrs. Olsen. So, therefore, it was important that he understood this and that he understood that he had to take care of himself.
JIM:
I was never looked down on because I was younger. I was always asked the most serious or direct questions about my health. And they valued what I had to say about it.
DONNA (JIM'S MOM):
I think the earlier that we can start to begin to have conversations with kids about any aspect of their healthcare, it's a time when they're looking for support from their parents; they're looking for support from their physician. As they get older, they really don't want anybody's support.
NARRATOR:
Starting Early: Early participation in healthcare is important for establishing personal responsibility.
DONNA (JIM'S MOM):
Going away to first grade was a time that could mean the transfer of responsibility from Mom to the teacher, or it could be a transfer of responsibility from Mom to Jim. And my preference was that we begin to look at transfer of responsibility from me to Jim. So, I was able to convince them that we could put the pancreatic enzymes in his lunch box, and that I wanted him to set up his own mist treatments and I wanted him to clean out his own equipment and I wanted him to be responsible for that.
DR. ROSENBERG:
And normally what we try to do by the time a child reached 9 or 10, we expected them to really be taking care of everything. By that, being responsible for taking their own medicine, counting out the pills, taking the pills, even doing a lot of the postural drainage.
BEN (JIM'S DAD):
I think, to develop that independence in your children, you just have to expect them to be independent but teach them that independence early and lead them along the way in daily activities.
JIM:
I was always given a lot of responsibility in terms of my health care; so today, I still take a lot of responsibility with my health care. A good example of that is, after I developed diabetes after my first year in college, I learned about that all by myself and maintained that all by myself. My Mom has absolutely no clue about what it takes to maintain that. And consequently she doesn't bother me about it.
Narrator:
Fostering Independence.
Personal responsibility is the key to maximizing independence.
Jim:
When I went away to college, there were a few issues I had to deal with in terms of being equipped to handle health care.
DONNA (JIM'S MOM):
What going away to college forced us to address that we hadn't addressed up until that point was that we were still doing his chest physical therapy. At the end of his freshmen year, we began to look at other options and came up with a therapy vest, which was great in terms of independence. The therapy vest, you don't need anybody else around to help do it, he could be responsible for it. It's expensive. Sometimes it's hard to get insurance companies to buy them. I think in terms of having every, making him as self sufficient as possible, my only regret was that maybe we hadn't arranged for a therapy vest while he was a senior in high school to help make sure that that transition to college would go a little bit more smoothly.
BEN (JIM'S DAD):
We do have to keep an eye on the future, make sure we do some prudent planning. And especially when you have a medical condition, you do those things everyday that you need to do and you'll have the best tomorrow you can have.
NARRATOR:
Planning ahead helps anticipate and reduce problems. Jim and his family have worked diligently to maintain Jim's health and strive for adult independence. They have demonstrated important preparatory steps in the process of health care transition:
- Future Orientation
- Starting Early
- Fostering Independence and
- Planning Ahead
One more challenge awaits them: the challenge of transition from pediatric to an adult health care system.
JIM:
Well, I'm still seeing a pediatrician. He is an excellent physician and you know, really seems to know what he's doing and everything. Anytime I've ever had trouble, he's always been able to prescribe and recommend things that work. So I'm completely happy with where I'm at. I'm sure things will change in the future and that, you know, maybe I'll have, especially if I move to another city, which is very probable. I'd have to find another physician that specializes in either CF or pulmonology.
DONNA (JIM'S MOM):
The transition from pediatric healthcare to adult healthcare is going to be a major challenge. The one thing I'm concerned about is that Jim also has C.F. related diabetes and how is his endocrinologist going to work with his pulmonologist? Now, everybody's at the children's hospital, they know each other, they can connect with each other. That certainly makes it a lot easier for Jim and it makes it a lot easier for his family in terms of how care is coordinated.
DR. ROSENBERG:
You probably have 15, 20 different specialties involved so they all need to be coordinated as far as the care.
DONNA (JIM'S MOM):
It's hard. It's hard to find adult physicians that are willing to take on this new responsibility.
NARRATOR:
Jim continues to receive coordinated and specialized care from pediatric providers. Jim's story is only one among many. In the United States, there are over half a million youth with special health care needs who turn 18 every year. How will we respond to their health care transition needs?