Making the Transition from Youth Care to an Adult Program

By Erika Muscat

APreparing for a Smooth Transition into Adult Care

s a caregiver of a child with a chronic illness, you likely are faced with many challenges and questions at the best of times. As the child transitions from a teenager to a young adult, more obstacles and uncertainties may arise, as they shift out of paediatric care, to an adult renal care program.

Oftentimes this process involves switching to an entirely different hospital, in addition to having a new team care for you and becoming more responsible for your own care.

Tina and Brennan are currently preparing themselves for this transition which will happen in about a year and a half. At 16, Brennan has had his kidney transplant for two and a half years and was on dialysis for six months prior to his transplant.

Some of Brennan’s concerns include losing the nurses he’s known for his whole health journey and that the new team won’t be as caring or inviting. He worries about not understanding or remembering what his doctor tells him or knowing the right questions to ask. For his mother, Tina, she is nervous about being excluded from her child’s care, and worries that he won’t be as closely monitored, and that the adult health care team will not tend to Brennan’s emotional needs. Additional challenges they will face include getting to know a new building and the new team not knowing Brennan’s health history.

With Brennan’s current care team, Tina knows exactly how she can contact them for questions in between appointments which is very important so they can get the answers they need in a timely manner. This level of comfort will not be immediately present with the new team.

The family is doing what they can now to prepare for the transition. The night before Brennan’s appointments, they chat as a family about what questions to ask and write them down. At the appointment, they let Brennan try to answer the doctor’s questions himself and encourage him to advocate for himself. They are working with Brennan to get to know all his medications and doses and prepare his own pill boxes.

The hospital is helping them prepare as well. Brennan’s nephrology nurse will be accompanying him to his first appointment. They’ve gotten a referral to an adolescent medicine team and Brennan has started to meet with them on his own, with his parents joining later. They have also learned that Brennan’s current team will follow him until age 25, so there is ample overlap in the process.

Tina and Brennan’s concerns about the transition into adult care have allowed them to have an open communication with the health care team and learn more about the process. As a result, they have learned that there are measures in place to ensure a smooth transition. Both the paediatric and adult teams will work together and work with them, asking them how they would like to participate in Brennan’s care. While it may take some time, they will get there.