Research In Action

Adolescents with congenital heart disease (CHD) are living longer and reaching key milestones of independence. But when it comes to everyday health behaviors—like learning to drive—we know surprisingly little about their experiences and challenges.

Our recently published research aims to illuminate this overlooked area. We interviewed 28 adolescents ages 15-19 years old with CHD who held a learner’s permit, valid driver’s license, or had interest in obtaining a learner’s permit or driver’s license; and a parent/guardian to learn more about their perceived barriers and facilitators to safe, independent driving, and to understand how CHD may impact driving.

A License Like Everyone Else

Over half of adolescents interviewed had a learner’s permit or driver’s license and most had no driving restrictions. Approximately one third reported speaking with a healthcare provider about driving. Two themes emerged:

1. Driving was a normal rite of passage for adolescents with CHD.
2. Adolescents were confident—but curious—about the impacts of CHD on driving.  

Adolescent perceptions of safe and unsafe driving closely matched findings from other published studies among adolescents without CHD. Following the rules of the road and wearing seatbelts were some examples of facilitators; mobile devices, distractions from passengers or other drivers and loud music were examples of barriers. They felt that their CHD diagnosis had little impact on driving, and only a few had spoken with their healthcare providers about it. These conversations were largely positive:

“I’ve always been told that I’m like any other kid. . .” (16-year-old male)

“They are happy that I can take myself places and be independent. . .” (17-year-old female)

“. . .congratulations, you got a license, like everybody else. . .” (18-year-old female)

Questions Beneath the Confidence

Adolescents in our study were curious to know if there were restrictions or limitations that they might not be aware of and talked about what other adolescents with CHD might need to know about driving. They wondered about the impact of driving-related stress and anxiety on cardiovascular function. Knowing where to go and what to do in case of an emergency was important.

Bridging the Gap in Care Conversations

Our findings affirm the normalcy of this developmental stage among adolescents with CHD, while also highlighting a potential knowledge gap among healthcare providers. Conversations about safe driving can serve as an important gateway for facilitating the transition to adult care, yet some providers may feel unprepared to initiate these discussions. Developing tailored resources that support self-management skills and encourage independence through licensure could play a valuable role in promoting key aspects of the transition process.

Our study is the first known to explore perceptions of barriers, facilitators, and the impact of CHD on safe, independent driving among adolescents. However, because we only interviewed adolescents receiving care at Children’s Hospital of Philadelphia, our findings may not capture the full range of experiences for those in other healthcare settings or outside the United States, creating an opportunity for additional research. We hope these findings offer valuable insights to guide the development of tools and resources that facilitate meaningful conversations about driving safety as part of the transition to adult CHD care. In a future blog post, we will share what we’ve learned from interviews with parents, as well as the perspectives of adolescent/parent dyads.