Table 1.
Phase | Partners | Parent participants | Methods | Deliverables |
---|---|---|---|---|
Phase I: Establishing partnerships Duration: variablea |
Parent: • Mother of child with CHD Clinicians: • 2 fetal cardiologists • Perinatal nurse coordinator Design and technology: • CHDI: director, designer, analyst, software engineers, quality assurance engineers, editor from Nemours KidsHealth • REACH: director of technology and methodology core |
• No participants or data collection in Phase I | • Weekly meetings dedicated to HEARTPrep© development • Frequent communication via Microsoft Teams and email to promote collaboration |
Partnerships to: • Facilitate stakeholder input on HEARTPrep© • Provide design and technological expertise to develop HEARTPrep© • Leverage existing functionality within NCH (Nemours app) |
Phase II: Creating content Duration: 8 months |
• Parent and clinician partners provided input on content (videos, articles, resources) • Medical editor refined written content to be easily understood by families |
Video filming: • 7 mothers, 6 fathers whose child received prenatal CHD dx • 2 Hispanic/Latino, 5 Black, 6 NHW • Payment = $100 |
• Parents participated in 1-hour recorded virtual interviews via Skype to provide content for HEARTPrep© videos | • HEARTPrep© content (videos, articles, resources) ready for prototype development |
Phase III: Developing prototype and testable intervention Duration: 8 months |
• Designer developed HEARTPrep© prototype • Analysts, software engineers, and quality assurance engineers developed testable HEARTPrep© intervention |
Prototype review: • 2 mothers whose child received prenatal CHD dx in past year • 2 NHW; age: 30-34 years • Payment = $50 |
• Mothers gave feedback on HEARTPrep© prototype • Feedback informed development of testable HEARTPrep© intervention |
• Testable HEARTPrep© intervention ready for think-aloud testing |
Phase IV: Conducting think-aloud testing Duration: 4 months |
• Analyst, software engineers, and quality assurance engineers refined HEARTPrep© based on participant feedback | • 5 mothers whose child received prenatal CHD dx in past year • 1 pregnant, 1 in hospital with infant, 3 at home after cardiac surgery • 1 Hispanic/Latino, 2 Black, 2 NHW; age: 23-42 years • Payment = $50 |
• Mothers navigated through HEARTPrep© and said out loud what they were thinking and doing • All communications recorded, transcribed, and analyzed for common themes • Results informed refinements to HEARTPrep© |
• Refined HEARTPrep© intervention ready for beta testing |
Phase V: Completing beta testing Duration: 4 months |
• Analyst, software engineers, and quality assurance engineers refined HEARTPrep© based on participant feedback | • 10 mothers expecting a baby with CHD • 2 Black, 8 non-Hispanic White; Age: 21-37 years • Payment = telehealth ($10), survey ($25), interview ($50) |
• Expectant mothers participated in HEARTPrep© • Provided feedback via survey and qualitative interview • Usability data obtained from Nemours app |
• Fully refined HEARTPrep© intervention ready for efficacy testing |
Note. CHD, congenital heart disease; CHDI, Center for Health Delivery Innovation; REACH, Research Expanding Access to Child Health Center; NCH, Nemours Children's Health; Dx, diagnosis; NHW, non-Hispanic White.
Partnerships developed over variable time frames, building on prior research and clinical collaborations.