Online Information About Cardiac Neurodevelopment: Mixed Methods Study.

Area of Science:

• Pediatric Cardiology
• Neurodevelopmental Pediatrics
• Health Informatics

Background:

• Infants with complex heart disease face developmental and learning challenges.
• Caregivers actively seek online health information to support these children.
• Understanding caregiver information needs is crucial for effective support.

Purpose of the Study:

• To analyze the availability, nature, and presentation of neurodevelopmental information on US congenital cardiac surgical program websites.
• To identify factors influencing the presence of this information.
• To characterize website models and their alignment with caregiver needs.

Main Methods:

• Mixed methods approach using convergent design.
• Quantitative analysis of website content and correlation with program/state factors.
• Qualitative content analysis of website format and elements.

Main Results:

• Only 39% of programs provided neurodevelopment information online.
• High surgical volume correlated with information availability (P<.001).
• Websites had a 7th-10th grade reading level, with minimal non-English content; two distinct website models identified.
• Few sites included features caregivers found helpful.

Conclusions:

• There is a significant lack of accessible, caregiver-oriented neurodevelopment information on these websites.
• This paucity may impede caregiver understanding and engagement with crucial services.
• Further research should assess the impact of different website models and generalizability to other pediatric specialties.