By: Brittany Savage, Nurse Practitioner, Bleeding Disorder Transition Care Clinic, Indiana Hemophilia & Thrombosis Center

Think back to the first time you entered a doctor’s office or called the pharmacy without your parents by your side. It might have been overwhelming, confusing, and even a little scary.

As a caregiver, you are often in the position of making appointments or speaking for your child during healthcare visits. Without partnering with their health care providers to work toward self-management, youth can feel lost as they become young adults and take those first steps into managing their own health matters.

TRANSITION FOR FAMILIES

Transitioning from childhood to adulthood can be challenging for everyone in the family. Healthcare management is no exception.

As children get older, they need to learn to manage their healthcare on their own. At the same time, you are also going through a transition as a parent. Parents and caregivers must learn how to step into a new supportive role. This transition looks different for each family.

As your child begins to transition into becoming an adult, this is an opportunity to start a discussion with their provider. Together, you can plan for age-appropriate opportunities for your child to care for their own medical needs.

A CAREGIVER’S ROLE

Transition means to change from one way of doing things to a new way. As youth grow, they will develop new skills to take care of themselves. Transfer of care is when a patient must transfer-or move-care to an adult doctor. Transfer of care is just one part of the transition process.

Healthcare providers can assist throughout the transition process by giving pediatric patients learning opportunities to be more independent and confident. Caregivers have a role of supporting their children throughout the process. You can do so in many ways, such as:

• Create a Plan – Since transition looks different for each patient, discuss what milestones look like for them with the care team. Take time to talk about how to handle emergencies, wearing a medical bracelet or necklace if needed, continuing education about treatments and procedures, and how to be responsible for appointments and medications.
• Give Opportunities to Speak Up – Sometimes there can be a pattern of providers and parents speaking to each other during a visit rather than the patient. Give your child the opportunity to ask or answer questions without your assistance. This gives them a voice and the ability to gain confidence in their knowledge of their own body.
• Phone Calls – If your child has not called the office or made appointments on their own, have them begin listening to your phone calls to start. They can write a phone script, make calls with you by their side, and eventually do this step on their own.
• Pharmacy – Encourage your child to get in a routine and take regular medications on time without prompting.
• Appointments – Mark a calendar with important health reminders and appointments.

It can be difficult to learn to step back from caretaking duties while maintaining oversight. Remember, being supportive during this time is important. You are preparing your child to put their best foot forward in creating a bright future. The best way to ensure a patient is prepared for their transition to adult care is to collaborate as a family with the healthcare provider.

Brittany Savage is a nurse practitioner at the Indiana Hemophilia & Thrombosis Center (IHTC) in Indianapolis. She leads IHTC’s pediatric to adult transition efforts with the goal of assisting and encouraging youth to develop skills and knowledge they need to gradually self-manage their healthcare.