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Online Information About Cardiac Neurodevelopment: Mixed Methods Study.

Jesse Boyett Anderson¹, Gabrielle Chinman², Diego Cisneros³

¹Department of Pediatrics, Division of Pediatric Cardiology, University of Wisconsin School of Medicine and Public Health, 600 Highland Avenue, Madison, WI, 53792, United States, 1 6088904258, 1 6088908102.

JMIR Pediatrics and Parenting

|July 14, 2026

Summary

Caregivers of children with complex heart disease lack accessible online information on neurodevelopment. Most congenital cardiac surgical program websites offer limited, English-only content, hindering caregiver support and understanding of developmental services.

Keywords:

OHIS cardiac surgery caregiver digital media heart defects, congenital neurodevelopment online health information seeking pediatric hospital qualitative research quality of life

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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.