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Navigating the EXperience of healthcare Transitions by helping Adolescents and Young Adults be Informed, Self-directed, and Empowered

Our research team needs your expertise to design an engaging and educational video game to help adolescents and young adults learn and practice skills needed for lifelong congenital heart disease (CHD) care. This game will help patients with CHD to develop essential transition readiness skills so that they can effectively manage their care, self-advocate, and navigate complex healthcare systems as an adult.

There is no need to have experience, or an interest, in video games to participate. We want to learn from you and make sure we design a game that many people will be interested in playing.

  • Participate in a focus group discussion, with 5-8 of your peers per group, so we can gain an in-depth understanding of factors and contexts where transition readiness and an educational video game could improve CHD management.
  • We expect focus groups to last approximately 2 hours and be held virtually via Zoom
  • Focus group discussions will be audio recorded and transcribed by a third-party service into a written document.
  • You will take a demographic survey when you participate in the focus group. No identifiable information will be recorded (e.g., we will not ask for names).
  • Upon completion of the focus group discussion, you will receive a $75 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
    • OR are the clinician of a 15-21 year old patient with CHD
  • Able to speak, read, or write in English

This study is supported through the Primary Children's Hospital Foundation, National Center for Advancing Translational Sciences of the National Institutes of Health under Award Numbers UM1TR004409 and 1K12TR004413, and the University of Utah Family Caregiving Collaborative.