In this series on transition to adult medical care, we’ll discuss tips and strategies from parents, providers, and family advocates for those who are starting to navigate the complex process of transitioning out of pediatric care and into adult health care. Thank you to Dr Raina Voss and Joy Gehner for their help in organizing the series.
Guest post by: Joy Gehner
Parent perspective on transitioning to adult care
When you have a child with special needs or complex medical issues, it takes a long time to learn about the care they need, and put together their team of doctors and other providers. After my daughter got her multiple diagnoses, between ages two and three, it was years before I felt like we had her full team of experts in place. It was really hard work, where I had so much to learn about what my daughter needed – and so did her care team.
We’ve been developing our relationships with these providers over the many years since then. We’re comfortable with each other. I trust them to know and understand my daughter and our family. When we talk about her care, we have a shared understanding of our experience, a shared history of knowing what works for us and what doesn’t. On an even more basic level, I’m familiar with the processes for making appointments, and how billing works. I know where to park and how to navigate the buildings to the clinics we need. I even have the phone numbers of her most frequent providers memorized, simply from having dialed them so often!
My daughter turned 18 last year, and I know that our time with our familiar team is running out. This is a really hard thing to think about, because I don’t want to have to do all this work over again – finding and getting to know and learning to trust and work with a whole new set of providers. What makes this even more complicated is that every clinic or specialist we see seems to have a different approach. One of her specialists has laid out a plan that includes a recommendation of the doctor to switch to, starting next year. Another has told us when we have to leave, but not where to go. Her pediatrician says she’ll keep seeing her “as long as no one tells me I have to stop.” Several clinics have never brought up the subject at all, and I’ve found it comfortable to avoid it myself as long as I can.
And at the same time that we’re figuring out this big transition, my daughter’s going through all kinds of other “transitions to adulthood.” There’s so much to learn and figure out all at once, it seems. It’s scary and confusing for me and for her.
What I’ve come to realize, a little later than I wish I had, is that planning ahead for this change is important. Just like in the early days when she was first diagnosed, it’s going to take some hard work and effort to pull together all the resources she needs now, as an adult, to keep her healthy and thriving. I’ve discovered that there are some helpful tools out there. And we don’t have to do this alone – we can ask her current providers for support and assistance in figuring out how to move forward in the safest, smoothest way possible.
Tips for parents:
1. Transition is not a quick and easy process. It took time to gather your teen’s care team, so expect it to take time to find an adult care team. Ask your providers for help with planning ahead.
2. Building trust and rapport takes time. If you can, try to meet adult providers before you have aged out of your pediatric team.
Article from the American Academy of Pediatrics’ Parent site, healthychildren.org
• The Center for Healthcare Transition Improvement, a national organization focused on improving transition through innovation, research and improved patient care.
• The Seattle Children’s Center for Children with Special Needs
• University of Washington’s Adolescent Health Transition Project
• Good 2 Go Transition Program @ sickkids.ca