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The Water Is Wide: Teens with Chronic Conditions Take on Their Own Care


I was recently trading stories about the treatment of our childhood cancers with a young friend who mentioned that until recently (he's 26), he continued to be followed by his pediatrician why switch?  His doctor knew him, after all.

That's an interesting approach. Far more functional than my own, which consisted of an adamant refusal to see any physician whatsoever for a few years once I finished treatment and my parents were no longer supervising my care.

The article released this week about how adolescents with type 1 diabetes struggle to take over responsibility for checking blood glucose levels and administering insulin from their parents described scenarios similar to ones most kids with serious chronic conditions face: conflict with family about lagging self-care and neglected health care visits; less-than-fastidious adherence to drug, dietary and monitoring regimens; efforts to minimize the seriousness of this disease that makes one so different at a point when it is most important to fit in.

Assuming responsibility doesn't just mean doing the day-to-day management of the disease or condition, however. Every kid has to learn how to be their own health advocate, say Patience White, a pediatric rheumatologist and Chief Public Health Officer of the Arthritis Foundation. Having your own portable medical record and knowing what family illnesses you have and what preventive measures you need to take are a part of all youth moving from pediatrics to adult health care.

But it can be particularly tough to take on these administrative tasks when you have a chronic condition doing so is often more complex:  moving on from familiar providers who have been a critical part of your life can be painful; finding the right new ones with whom you can work and who take your insurance takes a lot of effort.

White says, One in five youth have special health care needs such as diabetes, arthritis, cancer, asthma and developmental delay to name only a few, so they need to know how to handle their illness and navigate not just primary health care providers but specialty care as well.

My young friend said that in hindsight, the lack of psychosocial support when making this transition is particularly important for young adults. I have several friends who unfortunately have had to go under various forms of treatment, and were not provided whatsoever with psychological support. Plus many of us are pretty mobile, what with college and work. We don't have a consistent address. It makes it very easy to avoid consistent follow-up. Laurie Edwards provides a vivid portrait of the physical, psychological and social challenges this transition poses for young people in her book Life Interrupted.

It is tough enough to be a teenager learning how to be an independent adult, including finding health care when you need it. It is even tougher when a teenager who depends on health care to remain functional has to declare independence not only from their family, but also from familiar providers and practices, and then find new doctors whom they trust to join them in controlling the effects of a powerful, sometimes painful and always inconvenient disease.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

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Children and Young People's Health   Jessie Gruman   Participate in your Treatment  

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