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Getting to happily ever after: helping teens with chronic health conditions thrive as they transition to adulthood

Wednesday, June 14, 2017
By Richard Chung, MD, for KidsFirst
Duke Children's prom

In late April, I had one of the most memorable work experiences of my career: I went to the prom.

Fancy dresses and suits, a DJ, a dance floor, and. . .IV poles. Teens with a variety of chronic health conditions gathered to celebrate life in wonderfully typical fashion – by dancing the night away.

The Duke Children’s prom was a rich encapsulation of why we as healthcare providers and families do what we do – to make a way for thriving and joy for all young people despite illness and suffering.

Whether it is cystic fibrosis, sickle cell disease, cancer, or depression, chronic health conditions are far too common, and complicate what is already a challenging time of life for teens. Each year over 500,000 youth with chronic conditions “graduate” into adult healthcare. Unfortunately, the process of preparing for and realizing a seamless transition to adult life is often neglected, and many young people in their 20s struggle as a result.

Teens need to learn about themselves, their conditions, the healthcare system, self-care tasks, ways to cope with stress, and the list goes on and on. H.L. Mencken once said, “For every complex problem, there is a solution that is simple, neat. . .and wrong.” While there is no simple and neat solution for preparing young people for adulthood, this formidable task is only a problem if we neglect it. If we take it on proactively, however, it can become an invaluable opportunity for your child to develop and grow, and for your relationship to evolve in exciting and important ways.

With thoughtful preparation and planning, your teen can transition well, and seek and find their happily every after, perhaps even including a night at the prom.

Here are a few tips to consider:

Start early. Thoughtful planning and preparation are essential because the stakes are high! All of the blood, sweat, and tears poured into the life of your child by you, your family, and your healthcare team were investments for the sake of thriving not only at age 18 but throughout a long and productive adulthood. A difficult transition can pose significant risk to this investment, while a smooth transition can launch them towards the health and success we all hope for. Preparing for adulthood is a developmental process that involves a series of essential steps that start around age 12-14, not an on/off switch forced by their 18th birthday or some other life circumstance. Young people with chronic conditions need to manage their health and navigate the system, while also doing everything else involved in being a young adult. Starting early on the process will ensure that your teen establishes a firm foundation for future success.

Bubble wrap doesn’t work. It’s tempting to insulate teens from difficulties by keeping them close by, taking on healthcare tasks like getting refills and making appointments for them, and otherwise extending the typical parent-child relationship well into adult age. That instinct isn’t a bad one per se, and is even quite understandable if your child has been very sick or continues to struggle with active illness. The problem with that approach though is that there isn’t a viable next step that will get your child to true adult thriving. Karen Pittman, a youth development expert, famously said “problem free is not fully prepared,” meaning just because your child’s health is “stable,” doesn’t mean that we as parents and healthcare providers have done our job in preparing them for the future. Our mandate is not just illness or symptom control but helping them seek and find success in all of the rest of life. We care for young people so that they can do all of the things they desire. The bubble wrap approach might get them from day to day, but it won’t bring them where they need to go in the long run.

Get beyond the tyranny of the urgent. Step back and reflect regularly on your child’s progress in managing his or her health. Complex health conditions often involve a seemingly endless stream of urgent tasks day to day. These are essential, but the broader contours of your child’s experience year by year will determine their longer term success. Your child should mature over time as a patient and healthcare participant. Getting the illness “under control” is essential, but how that control is achieved is just as important. A good way to keep track of their progress is by setting healthcare participation goals each fall as they return to school and checking in periodically over time.

Adolescence and the transition to adulthood involve real risks, particularly if chronic health conditions complicate the process. However, with every risk, there is a corresponding opportunity for substantial growth and development. With thoughtful preparation and planning, your teen can transition well, and seek and find their happily ever after, perhaps even including a night at the prom.

Richard Chung, M.D. is the director of Adolescent Medicine at Duke University in Durham, NC.

 

 


Related Resources

Got Transition
[Maternal and Child Health Bureau and The National Alliance to Advance Adolescent Health]

 

“KidsFirst” is a blog, hosted by the Duke Department of Pediatrics, that provides high quality information to families on a wide range of important child health topics.