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Between Yesterday and Tomorrow: Transitioning Children to Self Care

July 18, 2010

Children depend on adults for survival. Needs such as food, shelter, education, and, at times, medical care must be provided by responsible adults.

Adults provide all of these necessities for themselves, one way or another.

In between these two life stages squeeze the adolescent and young adult patient. For several years, people must make the transition from dependency to in-dependency.

Normal children have enough difficulty with this process. We do not know who first uttered:

Mothers of teenagers know why animals eat their young

But we do know she was right.

We can also say that adding a chronic health problem to the mix does not make this life-stage any easier. At a time when offspring want to break away from their parents and fit with their peers, making them take responsibility for medications and blood work and doctor’s appointments can trigger a full-blown war of wills.

How can we make the transition work better? That question was the topic of a symposium at the American Diabetes Association Scientific Sessions a few weeks ago. While the speakers focused on diabetes management, I found lessons for my patients with kidney disease. Read on for the take-home messages:

First, psychologists now agree that these transitional years last far longer than they used to last.  Children today do not really achieve self-sufficiency until they near 30 years of age. However, everyone on the podium agreed that this fact does not mean they should remain in pediatric care longer. Transitioning to internal medicine colleagues and a self-care model still needs to begin during the teen years.

My own section of Pediatric Nephrology has no formal policy. In general, my approach has included the following:

  • Patients requiring frequent, regular care – those on dialysis or nearing end-stage kidney failure- should be transferred to an adult specialist at the time of their 19th birthday. In Nebraska, 19 is the age of majority.
  • Patients who require less frequent care – visits every 6-12 months – can be seen on breaks through college. When they get a job or otherwise land somewhere more permanent after completing their degree, referral will be made. This approach avoids the potential for 2 transitions for relatively stable patients.
  • Patients who request transfer to an adult service after the age of 15 can generally be transferred – most often this involves teenage boys who feel uncomfortable with our all female section or patients from far rural areas who can reach an internal medicine nephrologist faster than Omaha.
  • Some patients may no longer require a specialist, as long as they understand their previous diagnosis and the need to watch for signs of kidney dysfunction over time (many HUS patients, for example).

The most important component of transitioning care is communication. Doctors should start addressing this during the early- to mid- teenage years so it does not feel like a surprise or abandonment when it happens. The symposium examined a number of models of care for young adults and transitioning them to self-care. The bottom line is that no one has the answer. Which means we have a lot more research to do!

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4 Comments
  1. “Children today do not really achieve self-sufficiency until they near 30 years of age.”

    Really? That statement needs some explanation. Why different today? What is meant by self-sufficient?

    • I am working on some original references for this statement. The speakers at the conference tossed this about as “common knowledge.”
      I can see some of what they say. Very few jobs that can be filled by high school grads give you the salary and benefits necessary for shelter, food, and family. College often takes longer than 4 years now, and entry-levels positions after a bachelor degree may not meet these criteria, especially if one has educational debt. This feeling of “prolonged adolescence” may be why the age of marriage is getting older; it takes longer to reach the point when that step seems appropriate.
      Of course, these are merely my personal musings. I have a psychologist sending me some refs that I will be glad to share on this venue in the near future.

  2. Your personal musings make quite a bit of sense especially with the current economic situation, but would make more if the word “children” were replaced with “people” or “young adults” in the original statement.

    I simply cannot imagine calling anyone over the age of 18 a child and it not be incredibly insulting. It’s probably insulting at 15.

    I look forward to the references.

  3. I have met a fair number of late-teenagers who still appreciate a sticker at the end of their visit…
    In the literature, they do refer to “young adults” for the 15-25 year old age group (roughly; no one has really declared an official definition yet). Obviously, the transition is quite variable and ill-defined as well.

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