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Understanding Self-Advocacy and Implications of Living with Congenital Heart Disease

The overall goal of this study is to understand ways to help adolescents and young adults with congenital heart disease (CHD) prepare for transitioning from pediatric to adult care. We are specifically interested in understanding how to help patients with CHD build self-advocacy skills. We would also like to learn about ethical, legal, and social issues that may occur when living with CHD.
Participation in this study includes:

  • Completing an interview, on your own, so we can learn more about important areas related to self-advocacy and ethical, legal, and social issues related to CHD care.
  • The interview would be approximately 45 minutes.
  • Interviews will be audio recorded and transcribed into a written document.
  • You will take a demographic survey at the beginning of the interview. No identifiable information will be recorded (e.g., we will not ask for names).
  • Upon completion of the interview, you will receive a $50 gift card for your participation.
  • You will also be asked if you would be willing to let us contact you about future research opportunities.

You are eligible to participate in this study if you:

  • Are between 15-21 years old AND diagnosed with moderate-severe congenital heart disease (e.g., hypoplastic left heart syndrome) OR are the parent or guardian of a 15-21 year old patient with CHD
  • Able to speak, read, or write in English

This research is supported by University of Utah Center for Excellence in Ethical, Legal, and Social Implications Research (UCEER)