Strategies for Adolescent Patient Engagement, Teen Autonomy

Transitioning from pediatric care to adult approaches

A lot of healthcare organizations use technology to ease the healthcare process for pediatric patients. Going to the doctor can be scary for a lot of young children, and the use of mHealth tools and other toys can make it feel better.

For example, at Ohio-based Nationwide Children’s Hospital, virtual reality (VR) headsets transport hemophiliac patients out of a doctor’s office filled with needle sticks and into a different world.

“Patients are in a completely different world,” Jeremy Patterson, lead of User Experience Technology Research & Development at Nationwide and who created the VR tool, said in a past interview. “This world is fun and engaging, lets them play games, introduces them to new characters. It takes them out of what is normally a stressful situation and puts them into a fun world.”

Those tools are effective at getting young patients to visit the doctor, feel better about the doctor, and receive their treatments. But it’s not a distraction that can go on forever, doctors acknowledge. At some point, clinicians need to wean patients off of these crutches and transition them to the care they will receive in a more adult setting.

At Nationwide, that happens when patients begin to outgrow their fears and develop the maturity to perform some of their own procedures on themselves, said Amy Dunn, MD, director of Nationwide’s hemophilia clinic.

“We definitely wean patients off because we want patients to eventually do their own infusions, so they have to be able to see,” Dunn explained.

The hospital developed the VR tool to allow patients to view the “real world” whenever they want. This has allowed the team to take an incremental approach. A patient who is still fearful can escape into VR right until the procedure, and then watch to learn more about the procedure as it’s happening. Step by step, patients overcome their fears and develop autonomy.

Of course, every patient is different. Clinicians must pay attention to the emotional maturity of their patients as they begin to cultivate their own independence. Additionally, they must consider health literacy levels. It is a provider’s job to drive patient education to ensure patients are ready to begin receiving care that is more akin to adult care.

Balancing patient independence and parental involvement in care

The next step to addressing adolescent patient engagement is understanding a parent’s involvement in care. Medical providers must strike a balance between adolescent patient privacy and establishing a sound foundation of family engagement.

Foremost, providers must grapple with this from a data management perspective. While HIPAA rules state that parents and legal guardians act as personal representatives for minors’ medical records, providers must begin to integrate patients into that picture. As children grow closer to young adulthood, providers may consider granting them more access to their own medical records.

At the same time, providers should consider the level of access parents may have. While parents should have full data access for their young children, balancing patient privacy for adolescents is more complicated than the cut-and-dry HIPAA rules.

“Concerns about confidentiality may create barriers to open communication between patient and physician and may thus discourage adolescents from seeking necessary medical care and counseling,” says the American Academy of Family Physicians (AAFP).

The American Academy of Pediatrics (AAP) echoed those sentiments in a recent guidance about patient portal access and adolescent engagement.

“As they mature, adolescents develop maturity and an increasing capacity to manage their own communications and health data over time,” the AAP stated. “Accordingly, there need to be different types of communication of health record information supported by different types of technology for different levels of autonomy and maturity.”

Most doctors solve this problem by offering parents a selective view of the patient portal. This would mean that parents could see some medical information, but not all of it, such as mental or reproductive healthcare data, for example.

Fostering adolescent patient privacy is essential for establishing trust between the patient and the provider and ensuring the adolescent actually accesses care and treatment when they are having a health issue.

Clinicians should also bring this level of separation into the practice. Many primary care providers begin to cultivate adolescent autonomy by giving parents and children the option to have the parent sit in the waiting room for all of or a portion of a medical appointment.

This allows patients the opportunity to discuss what they like with their providers. Legally, providers cannot discuss the contents of the conversations with parents, unless the patient reports that they or someone else has or will hurt the patient.

Providers should also discuss the importance of family engagement with patients. Although clinicians may be working to cultivate independence in adolescent patients, they may still emphasize the importance of family engagement for patients of all ages.

Family engagement can improve patient safety and provide emotional comfort during medical treatment. Providers should still emphasize the teenager’s choice in this process.

“It’s analogous to us saying that we encourage adolescents to discuss any health issues with their parents,” David West, MD, medical director for Health Informatics at Nemours Children’s Health, said in a previous interview. “We want that relationship to be open and dynamic. We try to encourage patients to talk to their parents, for the same reasons that we encourage adolescents to have their family involved and be an adequately informed support structure for them.”

Communicating patient independence with parents and guardians

Of course, some parents may not always feel ready to relinquish control of their teenagers’ health. Parents may have an adverse reaction to seeing a limited view of the patient portal or being asked to sit in the waiting room during exams.

In most cases, these parents are just looking out for their children. Providers should be patient with these parents and outline the benefits of cultivating adolescent patient autonomy and reassure them that they are emphasizing the importance of strong family engagement. This should often be enough to assuage parents’ concerns.

Additionally, industry experts recommend providers begin this transition early.

A 2018 report from AAP, AAFP, and the American College of Physicians (ACP) outlined the importance of discussing pediatric transitions to adult care as early as age 12. This will also allow providers to take an incremental approach to introducing adolescent autonomy. Instead of asking a parent to sit in the waiting room for an entire appointment, they may only ask the parent for privacy for a few minutes.

Making the transition from pediatric to adult healthcare is an inevitable one. Establishing a set of best practices for preparing both patients and their parents or guardians for this change will ensure a smooth and simple transition.