Transition to Adult Care

All Articles in the Category ‘Transition to Adult Care’

Transitioning from pediatric to adult health care: post 4

Author:

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. Read full post »

Transitioning from pediatric to adult health care: post 3

Author:

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.

Transitioning to adult care: the story of one cancer patient and his family

In this guest blog post a family shares their story of working towards young adult self-management.

Patients who are cancer survivors, even if their cancer is cured, often need specialized medical care for the rest of their lives due to their past illness and the treatments they’ve undergone. The mother of a former Hem-Onc patient – 20 years old now – feels grateful to the Seattle Children’s Hospital Heart Center for helping launch their transition process. “They did a one-day conference, and half of it was about transition to adult care. We all went – me, my husband and my son. It was very useful, even if not everything applied to us because my son’s heart condition is not congenital.”

Due to the drugs he’d been exposed to during cancer treatment, this young man is at risk for a number of side effects that might only show up later in life, as well as for a recurrence of cancer. His long-term follow-up care as an adult needs to include awareness of this health history and specific monitoring for certain health conditions. This creates a steep learning curve for him – even more so, given that his treatment also created some difficulties with short-term memory. His mother sees careful note-taking as one skill he needs to develop, as he moves towards full independence in his healthcare management. Read full post »

Transitioning from pediatric to adult health care: post 2 Parent Perspective

Author:

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! Read full post »

Transitioning from pediatric to adult health care: post 1

Author:

Guest post by: Dr Raina Voss

Welcome to our new series of Teenology101 blog posts, which will focus on the transition to adult health care (and to adulthood in general). Transition is a super important topic when it comes to the health of teens – for teens who have chronic health conditions, their health status often worsens during this time, and we think that might have something to do with the rocky road of transitioning to adulthood. Despite that reality, discussions about transition often get skipped during medical visits, or put off to discuss at a future appointment.

We frequently hear from parents that there are things they wish they had known sooner to prepare themselves and their child for the transition to adult care. Our goal in this series of posts is to answer some of those questions, or at least get you thinking about how to find answers. Read full post »