When my daughter was 4 years old, she was diagnosed with Juvenile Idiopathic Arthritis (JIA). This is a chronic condition that she will likely struggle with all her life. It requires weekly immunosuppressant injections (currently a chemo drug) and involves regular appointments with specialists to ensure her joints and her eyes aren’t sustaining permanent damage.
It hasn’t been easy, but we’ve adjusted. And at 6 years old, my daughter has a pretty firm, age-appropriate, handle on her condition and the steps required to keep her well.
But as of now, I handle the vast majority of her care. I make the appointments, I give her injections, I monitor her symptoms and ensure she gets the sleep and nutrition she needs. Keeping my daughter healthy is a job I embrace wholeheartedly right now—though I know the day will come when she needs to take on the responsibilities of her care herself.
Preparing a child with a chronic condition for adulthood
It’s scary for parents to transfer the responsibility of care to their children—then trust them to manage their chronic condition independently in college. The parents in my JIA groups regularly talk about the stress of preparing kids for life on their own. I’ve learned from them that these steps can help ease the transition.
1. Start early.
“The process of preparation is very long,” says Lynn Davidson, MD, an American Academy of Pediatrics (AAP) spokesperson. “And, basically, it’s about how to help your child become independent.”
The AAP recommends starting the transfer of responsibilities as early as 12 to 14 years old. Patient advocate Ilana Jacqueline, author of the book, Surviving and Thriving with an Invisible Chronic Illness, agrees. “Children need to be taught from a very early age that their health is their responsibility,” she says.
2. Transition gradually.
“It should be a gradual process of teaching children how to start doing things on their own, but with supervision,”says Jacqueline.
To aid that process, she suggests teaching adolescents to use phone alarms, or medication management apps, as reminders to take their medication and encouraging them to speak up and ask questions at doctors’ appointments.
“If you begin the transition at 18, you’ve already missed valuable time,” Jacqueline explains. “Starting the transition as soon as the child is capable of completing certain tasks on their own makes the process less anxiety-producing for both the parent and the child.”
3. Research resources.
Foundations for chronic conditions often offer specific advice to aid in these transitions. For instance, the Crohn’s and Colitis Foundation has a website just for adolescents going off to college. These sites provide checklists and guidelines young adults may refer to once they’re on their own.
“Patients can register for disability services at their college, request special housing or diet accommodations if necessary, and find a local healthcare provider if college is far from home,” says gastroenterologist Traci Jester, MD, co-chair of the Crohn’s and Colitis Foundation’s pediatric affairs committee.
4. Find a new treatment team.
Finding a new primary care physician can be challenging for any adult who has outgrown a pediatrician’s care—it’s especially so for teens with a chronic condition that creates a complicated medical history.
Dr. Jester says that young adults can make that transition easier by ensuring former care providers send records to the new physician or bringing records themselves. She also advises patients to make two lists before their first appointment with a new care provider: all current medications and questions for the physician.
Dr. Davidson suggests that patients transfer their primary care physician before tackling each specialist. “As they reach adulthood, it’s good to have them grounded in a way with a primary care provider. That provider may have suggestions or preferences on which specialists the patient should then work with.”
5. Request a medical history.
Dr. Davidson recommends going beyond providing basic files: “The biggest problem is that it’s often impossible for the provider to go through reams of medical records in order to understand the patient’s medical history. So the best thing to do is to provide an excellent medical summary from the child’s previous medical provider and specialists.”
She explains that most providers are willing to create a medical summary. Ask them to include key pieces of medical history: medications, diagnoses, surgeries, illness presentations, and any other relevant details.
6. Create a personalized medical history.
It can be helpful for the young adult to create their own medical history as well. They can write a paragraph or two explaining how they perceive their condition. It’s not always how an adult provider would understand it, Dr. Davidson says.
Jacqueline says parents can prepare their teens to explain their condition to others by encouraging them to keep detailed records. “Young adults should start keeping their own medical binders from an early age,” she adds. “Being a responsible patient means keeping a detailed record of past issues, possible triggers, medications, and side effects.”
7. Ask the pediatrician to contact the new provider.
“If at all possible, I encourage the pediatrician to do a warm handoff, particularly with more complicated patients, for that new provider,” Dr. Davidson says. “A phone call or email to give the new provider a heads up, while also sending the medical summary and leaving the door open for continued communication if necessary, can be very helpful in allowing for a smooth transition.”
8. Let go, but keep in touch.
No matter how prepared a teen may be, letting go is inevitably hard for parents who have been so involved for so long. “A parent is always going to feel some apprehension about this,” Dr. Jester says. “But starting with small responsibilities and gradually increasing is how to best ensure a smooth transition.”
She also says that communication between the parent and patient is critical during this time. “Parents can be reminded that the better prepared the student is with the watchful eye of the parent at home, the better they will do when independent.”
And when that time comes? Jacqueline wants young adults with a chronic condition to know, “You can do it. You will do it. And you’ll feel stronger and more secure knowing that you’re in charge!”