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Teens and CF > Transitions from Pediatrics to Adults: A Brave, New World

Transitions from Pediatrics to Adults: A Brave, New World

"I was 19 when I transitioned and it was a huge shock. My peds doctors were amazing, my mom was usually with me but even then my peds doc spoke directly to me and helped prepare me for what was coming. She took so much interest in my life outside of CF (cystic fibrosis) as well (she knew that what was going on at home affected my CF).

Transitioning to the adult clinic was awful. I felt that my new doctor didn’t care about me as a person and that I was just another patient to her...I’m naturally a shy person and after that first disaster of an appointment, I just retreated into myself. After a few more appointments, we have slowly started to get to know each other and I’ve relaxed a bit more, but its still not the same. I still have the feeling that I’m such an inconvenience to her...and it really kills me every doctor’s appointment. My peds docs were like family...and I was hoping that my adult doctor would be the same, especially since I’m always up there and always having to deal with them. Any advice? "

Lisa’s Answer:

Thanks so much for sharing your story. First of all, let me just say that you are not an inconvenience to your doctor. Even if she thinks you are, you deserve excellent medical care. So don’t let that feeling get in the way of getting the care you need. And, you so succinctly explain the differences between the peds and adult clinics. Let’s look at some of the possible reasons why you are experiencing this:

1. The medical model for pediatrics is different than that for adults. Many children’s hospitals practice a patient- or family-centered care model. Here’s what this means as defined by the Institute for Patient and Family Care:

Patient- and family-centered care is an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families. It redefines the relationships in health care.
Patient- and family-centered practitioners recognize the vital role that families play in ensuring the health and well-being of infants, children, adolescents, and family members of all ages. They acknowledge that emotional, social, and developmental support are integral components of health care. They promote the health and well-being of individuals and families and restore dignity and control to them.

This sounds a lot like your pediatric CF Center: hands on, involved, collaborative, patient-focused. This is different from the traditional medical model which:
• Sees illness as a medical event rather than a family experience
• Tells patients what will happen as opposed to providing education and giving choices (giving choices makes education necessary)
• And, sets policy from the standpoint of what is best for the hospital and provider as opposed to considering what is best for the family / patient

Basically, it’s top down leadership rather than collaborative leadership. What you are experiencing, as a patient, is typical of changing from one system to another. Some people like it. Others, like you, don’t.

2. A lack of time, energy and money. A problem that adult centers have, even if they are trying to be patient-centered, is the lack of time they have to spend with each patient.

There is a shortage of doctors who are willing to “take on” adults with CF. As the CF patient population ages (good news!), this is becoming a bigger problem. The CF Foundation recognized this quite some time ago and started the Adult CF Program but it takes a long time to put in place. Unfortunately, CF doctors just don’t grow on trees. The cases are complicated, time-consuming, and take specialized education. Often, CF adults, due to progression of their illness, are on government assistance and medical insurance programs so the reimbursement rates are low. Basically, CF cases are more complicated, time-consuming, and pay less. No wonder there are doctor shortages.

These are issues that face our medical system as a whole. As a patient, you are seeing the “trickle down” effect of doctor shortages, low reimbursements, high-need patient populations, and high-pressure schedules with too many patients and not enough time.

In short, these docs don’t have the time to be warm and fuzzy even if they wanted to. They also don’t have the time to hand-hold, coerce (about adherence) and educate. This falls to the individual.

That is why it is soooooo important for young adults to be well-prepared for this “brave, new world” before they transition. Basically, no one cares about you quite like you do, especially in the adult medical world. Not that they don’t care, they do, but it’s your life at stake. So- become an effective advocate! More on that later.

3. Doctors are people, too. Personality styles matter. You probably had a doctor (and many peds are this way) who is a “warm and fuzzy” person; someone who values relationships and connecting with people.

The medical field is interesting because it is both a people- focused profession and a world of science. The heavy emphasis on science often attracts people who are very analytical and “left-brained.” This may lead them to be more interested in the facts, figures, data and science than you as a person. Some are more interested in research and making a name for themselves than caring for their patients. Sad but true. There are good doctors and bad ones just like in all walks of life.

If you went from a doctor with a “relationship-oriented” personality style to an “analytical” one, that could be a real shocker. Especially if you are also “relationship-oriented.” Each has it’s pros and cons.

Maybe you could check out some of the other CF docs in your clinic if you have a choice. You might find someone who is a little more “touchy-feely” than the person you are seeing now. Just remember that, because of the issues we already discussed, you will probably not have the same level of relationship as you had with your pediatric center. And you might need to grieve this a bit. It is very hard. (hug)

4. Be an effective advocate. Being an effective advocate for yourself is critical. But being a good advocate is a learned skill. Since you mentioned that you are shy, you might have a hard time being assertive, especially if you think that being assertive means being aggressive. There is a big difference between the two. Being aggressive is telling other people what “they need to do.” Being assertive is sharing what you need. This article on our website (www.PCWHI.com) describes how to be an effective, assertive advocate: http://www.parentingchildrenwithhealthissues.citymax.com/articles/article/4270854/162326.htm

Thanks again for sharing. I hope this helps you find your way a little easier. Best wishes for good health and much happiness in 2012.

Lisa C. Greene is a national public speaker, writer, certified parent coach, and mother of two children with cystic fibrosis. She is also the co-author with Foster Cline MD of the award-winning Love and Logic book “Parenting Children with Health Issues.”   For more information, see www.ParentingChildrenWithHealthIssues.com. 

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