Transitioning from pediatric care to adult healthcare can be a stressful experience for teens and young adults. This change in providers often leaves them feeling abandoned by the healthcare safety blanket they once knew. It compounds the already tough transition into adulthood, and having to manage their own appointments and medications without the help of caregivers.
This transition is what NewYork-Presbyterian (NYP)/Columbia researchers examined in a recent youth participatory action study, which is pending peer review.
The current system of transitioning from pediatric to adult care is disorganized, which means young adults’ health needs are often not met, according to another study, published in Sage. For teens who are Black and Latino, this experience can be even worse when combined with medical discrimination.
First-time healthcare money worries
For many young adults, not knowing what their health care will cost is especially daunting, the NYP/Columbia researchers found.
In the study, a group of 18- to 24-year-olds shared their experiences with healthcare transitions. They were part of NYP’s The Uptown Hub, a program designed to connect youth with guidance, including healthcare resources. The participants were from Washington Heights and primarily Black and Latino. Many of them speak Spanish at home, so some not only have to learn how to navigate their own adult health care but also that of their families.
The youth shared their concerns about how much certain services cost, or if they would be getting a bill. The complexity of billing in the healthcare system — and horror stories of surprise bills — is a barrier, says Dr. Virginia Byron, a pediatrician and adolescent medicine fellow at Columbia University Irving Medical Center. Dr. Byron was part of the research team that conducted the study.
For many young people, she says, this is the first time in their lives they’ve had to worry about a medical bill, which might cause them to delay care.
The “adultification” of healthcare
Young people are expected to know how to navigate the healthcare system when they become adults, but this isn’t taught in schools nor do all parents teach children these skills. Some parents barely know how to navigate the system themselves.
For Black and Latino youth, what’s being called “adultification,” being given the responsibilities and stressors of adults before they’re developmentally mature, happens even earlier, health experts say. Yet studies show that people’s brains are still developing into their late 20s and even up to age 30, according to Dr. Sarah Ann Anderson-Burnett. She’s a pediatrician serving as the director of medical services and quality improvement at Barnard College, where she sees patients who are entering into adult healthcare from pediatric care.
At the same time as Black and Latino young people are adultified, they’re not always treated with respect and agency over their bodies.
“Often in society, they’re kind of pushed to the side as if they’re annoying at that age, where people are like, ‘oh, they’re bucking against authority’ and doing all of these things that developmentally, it’s been studied, should be done,” said Dr. Anderson-Burnett. “Those are key transitions and key understandings and development that allows them to become independent adults.”
Supporting and empowering youth to be their best advocates during this vulnerable and challenging time is at the core of her work, says Dr. Anderson-Burnett.
Medical mistrust
Four years ago, when Abibatou Marenah was 16, she had an experience with the healthcare system that shaped her career trajectory.
During a routine check-up then, Marenah requested a female OB-GYN, but she was ignored. Marenah was examined by a male doctor against her wishes.
“I felt violated and powerless, and the experience left me feeling ashamed, angry, and deeply mistrustful of the healthcare system,” she told Epicenter in an email.
This medical mistrust is often experienced in Black and POC communities. Advocates say this can make a young adult reluctant to get healthcare as they continue to age.
“Often [young Latinas and Black women] will go to a doctor, even a pediatrician, and the doctor may unknowingly treat these people with adultification bias,” said Dr. Anderson-Burnett. “It’s really frustrating, and it’s really hard, when you’re telling people, ‘hey, I’m going through this’ and they’re like, ‘well, you should be fine with it; you know how to handle that.’ Or there’s assumptions made about what they’re doing sexually.”
A need for safe spaces
NYP’s Uptown Hub researchers found that having easy access to, and being comfortable with, your doctor were huge factors to making a good transition from pediatrician to a primary care physician.
“You want to be in a safe space,” said Marenah, who’s now an undergraduate student at New York University and who both conducted and participated in the study. “[Not] having that … is something that, for young adults, makes them push away from going to the doctor.”
Her own issues finding a trusted doctor drove her to join the research team and find more answers to obstacles affecting other youth.
As part of the Uptown Hub, program participants are paired with staff members who help them set up appointments and advocate for themselves in and beyond the healthcare system.
“There are so many personal barriers for young people to overcome in terms of anxiety, and not being comfortable in the space, and not knowing what to expect, and medical mistrust, and hearing all these experiences from family members and in the news about sexual abuse in the healthcare setting,” Dr. Byron said. “Showing up and having someone smile at you, from what I’ve seen with my patients and heard in the study, can make [a big] difference.”
Best practices for transitioning young adults
Dr. Byron shares these tips for youths transitioning to a new doctor:
- Make sure to ask how to reach the new doctor outside of the appointment.
- If you don’t like to make phone calls, then you might want to make sure you transition to a doctor who can communicate via a messaging app, for instance. Ask them how soon you can expect a response, how easy it is to get in touch with your doctor or to get a refill or referral. It’s also useful to know about same-day appointment availability for last-minute health issues.
- GotTransition.org is a great resource for the pediatric-to-adult transition. Their patient-oriented handout has helpful tips and a transition readiness quiz.
- It’s important to have a “medical home,” and a consistent, trusted clinician who knows you and can see the big picture with your health. But while you figure that part out, don’t forget there are lots of free reproductive health clinics around the city where young people can get STI testing, PrEP, and birth control.
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