PocketHealth was founded on the belief that giving patients ownership of their medical and imaging records empowers them to become active and engaged in their health journey. It’s a fundamental cornerstone that guides us every day – especially in our Patient Experience (“PX”) support team.
This post is by our PX team member, Marissa. It’s a personal story of her own experience transitioning from pediatrics to adult care. Marissa learned that healthcare is a partnership between professionals, alongside their patients and families, and she’s generously offered to share her own experience. Settle in for a great read – there’s much to learn!
When your child turns 18 there are many milestones and accomplishments to celebrate. They’re graduating from high school, pursuing higher education or career goals, and learning how to navigate life independently. They may also be transitioning from their childhood hospital to an adult hospital with a new care team. This can be a scary time, which I learned firsthand after going through a rough transition myself. It can be a stressful experience not knowing where to go or what to expect for your first visit to your new hospital. Note: this was my personal experience, and every patient journey is unique. But for me, it was a different environment compared to my childhood hospital, and I felt more like a number than a patient. Also having to explain my entire health history every year as they did not have my information was frustrating; I felt like a broken record. Looking back, I wish I was more prepared or at least had some guidance on where I could find that perfect fit. That’s what inspired me to create the following five step guideline to help you, and your young adult, manage the process.
- Talk to your child’s doctor about the future
- Open up the dialogue early. Start discussing it well in advance (about a year or so) to minimize the stress when the time comes. This is especially important for individuals who don’t deal well with change
- Ask your child’s doctor to make time to talk about the future, and discuss the best place for your child to go once they turn 18, how to be prepared and what to expect
- Learning about how adult hospitals are different from children’s hospitals will help to manage expectations and reduce the stress for the patient and their families
- Examine the options
- Make sure you understand what options and resources are available. This is especially important for children with critical diseases or long term treatment paths, as they may need a specific facility
- If your child needs particular specialists, his/her doctor may have recommendations as to who would be best or may know of options closer to home to reduce travel
- Prepare questions
- It’s helpful to keep a list of questions and record the answers for future reference
- Ask your child if they have questions of their own or anything else they would like to discuss with their doctor
- Book an introductory meeting with the new doctor(s)
- It is helpful to meet your child’s new doctor ahead of time to discuss future care goals
- If possible, arrange for a tour of the new hospital or health care center, so you and your child are familiar with where to go
- Confirm appointments; if you have not heard from anyone about the first meeting, take the initiative to reach out
- Prepare for the first appointment
- Have notes of your child’s health history
- Get past imaging records and reports from your child’s hospital or through PocketHealth
I hope this guide eases your concerns and helps prepare you and your child for the next steps in their healthcare journey.