Supporting Your Medically Complex Child into Adult Care

Children and families managing medically complex care are no stranger to the health care system. You know the language, the routines and you’re likely very comfortable being your child’s advocate. But even so, it is important that you feel informed and prepared for the time when your child needs to transition from pediatric to adult care.

Because of the complexity of their care, the shift from pediatric to adult care also requires a lot of energy and coordination. It also represents a major shift for pediatric patients themselves.

“It’s a very difficult transition for young people, particularly people with chronic illness, to move from pediatric care to the world of adult specialty care,” says Jeremy Beaudry, lead healthcare experience designer at hiCOlab, a design and innovation team that works with patients, caregivers and employees across University of Vermont Health Network.

“Many of the patients with these chronic conditions may have been diagnosed as young children, so we’re talking about deep, deep relationships that have developed over a period of years,” says Beaudry. “The prospect at age 18 or 19 of leaving those providers is a very stressful thing to anticipate.”

Case Study: Helping adolescents with chronic illness get ready for adult health care

Beaudry’s work at hiCOlab has focused specifically on designing tools to help pediatric patients dealing with chronic or complex conditions prepare for the transition to adult care, and the group’s research into patients’ experience during these transitions has made several challenges clear:

  • Patients need information to help them understand and manage their care.
  • Patients need better care coordination during their transition.
  • Patients need time and help establishing relationships that can help them feel comfortable after the transition occurs.

With nearly 1 million medically complex pediatric patients making this transition each year, patients and families across the nation are asking the question: how can we make this journey easier?

Here are some tips for making the experience a positive one:

Start the conversation early

If you’re caring for a pediatric patient with complex medical needs, it can be difficult to imagine knowing what they will require months, if not years, down the road. Still, it’s important to start thinking – and talking – about this transition early.

Talk to your pediatrician when your child is 12 or 13 years old to begin this conversation about how to help your child progress into adulthood. That way, the progress can be made incrementally over a long period of time, rather than sprung on your child and family unexpectedly or suddenly.

A first step could be as simple as asking questions like “what is your policy on transitioning patients to an adult provider?” or “at what age will you no longer be able to follow my child?” By asking questions like this, you can begin to gain a better understanding of when changes will be happening and what to expect. Additionally, your doctor may have recommendations or a guide to help you navigate this process, and be willing to help you identify a new provider when the time comes.

Think about more than health care

Medical needs are likely your highest priority, but there are other considerations as well. Consider how education, living arrangements, relationships, guardianships, careers and more will impact your child’s ability to be independent and make informed decisions.

To ensure you’re looking at the larger picture, consider your child’s day-to-day activities and make a list of the people and places they’re involved with. From there you can determine if they will need to adjust any aspects of their routine as they transition into adulthood.

Take the transition slowly

Depending on your child’s independence, consider doing some groundwork to ensure they are comfortable once they transition to their adult PCP.

As a parent or guardian you may be able to schedule an advance meeting with their new provider to discuss issues or concerns.

You may be able to schedule practice visits with your child to introduce them to the new office and staff, or experience minor procedures, like getting their blood pressure taken, without meeting their new provider.

See if you can schedule your child’s appointment as the office’s first or last appointment of the day; or plan to bring a favorite toy or other distraction, like a tablet or smartphone, to help calm your child while they become used to an unfamiliar environment.

You can also consider working with your new provider’s office to schedule multiple short visits rather than a single, longer visit.

Give them a voice

No matter your child’s medical needs, they are an individual with their own opinions and preferences. Working with them and engaging them in the planning and decision-making process can help alleviate anxiety and offer insight into the best ways to ease their transition into adulthood.

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