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.
A young man with chronic lung disease
In this guest post, a parent shares their experiences both frustrating and enlightening, about being the parent of a youth with the chronic illness, asthma. Though this illness is well known, it is still complicated.
My son is now 20. He’s been followed by medical specialists since he was three weeks old, for asthma and also for treatment of the numerous bone fractures that he was susceptible to because of his medications.
People – even doctors – often think of asthma as something you’ll outgrow. But asthma is a tricky disease. In my son’s case, it didn’t seem to follow a clear path and we dealt with lots of misunderstandings and heartaches over the years, trying to figure out causes and treatments. On occasion, when he was extremely ill, we were referred for additional testing – but all that was ever identified was severe asthma.
I think when one has a disease that doesn’t fit in the box, it can make providers feel hopeless and also helpless, but it translates down to us. It felt like there was no one trying to help solve this problem of why he was so sick. There was also a sense he wasn’t a patient people felt good about – nothing worked, he could suddenly die. It felt like the providers might be relieved he was no longer on their case.
When my son was 16, there was this premature hand off – maybe our doctors felt there was nothing more they could do? We were told, “just go to the [adult hospital],” but when we did, the [adult hospital] would say, “go to the children’s hospital.” I guess sometimes the providers are not savvy to the realities of the system. So my son’s response was to just stop going – he didn’t feel he was being supported by any of them.
There also wasn’t anyone looking at the BIG picture of what it’s like to miss so much school – and in life – because you are constantly getting sick. Sometimes worse and hospitalized, and then discharged and getting better, but still sick. It felt like other programs had a clear path of treatment and discharge, and education on how chronic life threatening illness impacts family and also child development. In our case, his condition’s effect on his schooling was devastating. It negatively impacted his grades and his ability to finish. This was like another bad side effect of his illness and providers didn’t help navigate this at all.
So I tried to set up a transition plan with him, on my own. When he felt ill, I encouraged him to call the nurse line to help him decide if he needed Urgent Care, the ER, or could maybe just follow instructions from the nursing line. I tried to emphasize choice – giving him the freedom to go to the dentist or not, for example. Because chronic illness is exhausting, I offered to help – make appointments, drive to appointment, fill meds. I think it was doubly painful when providers would say: “Oh, he’s above age 18, you don’t have to be here,” and I’d have to remind them that medical stuff is complicated and you need your person there – that yes I am his mother, and I’m also his person.
I think having a good transition plan is very important, not just because these are our children, but because doing it badly leads to very ill adults with really poor outcomes. A difficult transition can teach a young adult to not trust in the medical system, and not persevere to get the care they really need to have safe and healthy lives.
Tips for parents and youth:
1. Your medical team is knowledgeable, but they may also be unaware of the challenges of living with and managing chronic illness. You will be an expert in you and your teen’s condition. Do teach your providers what you learn as you transition through systems. These lessons can help other patients
2. Have a transition plan. Start early with giving your teen self-management skills. Encourage them to know their past medical history & current medications.
3. Transition to adult care can be a frustrating process, but it is not hopeless. Empower your teen to persevere and continue to speak up for their needs. Be ‘their person’ or advocate, but also allow them the room to practice advocating for themselves if able.
What to expect when your child transfers to an adult healthcare provider
• Teen Transition: A Parent’s Important and Changing Role- Center for Children with Special Needs
• For Teens –Pediatric versus Adult Healthcare