JMIR Pediatrics and Parenting · Published 2026-07-14 · DOI 10.2196/70630
Jesse Boyett Anderson, Gabrielle Chinman, Diego Cisneros, Xiao Zhang, Peter Ferrazzano, Krisjon R Olson
Abstract BackgroundInfants with complex heart disease often have delayed development, learning difficulties, and mental health problems as they grow older. Their parents and other caregivers engage in online health information–seeking behavior to understand and support their children’s health and development. ObjectiveIn this study, we analyze the presence, nature, and presentation of information about neurodevelopment on the websites of congenital cardiac surgical programs in the United States. MethodsWe used a mixed methods approach, specifically a convergent design. We correlated the presence and presentation of information about neurodevelopment on each program’s website with state-level and program-specific factors extracted from multiple publicly available databases. Quantitative analysis methods included descriptive analyses, Student t ResultsOnly 39% (50/129) of programs provided any information about neurodevelopment online. High surgical volume correlated with the presence of online information (P ConclusionsWe highlight the paucity of accessible caregiver-oriented information about neurodevelopment on congenital cardiac surgical programs’ websites in the United States and characterize two primary website models. The lack of information may negatively impact caregiver understanding of and engagement with neurodevelopmental services for their child with a congenital heart defect. Future research should explore the impact of each website model on caregiver understanding of and engagement with neurodevelopmental services, as well as the generalizability of these findings to other domains of pediatric subspecialty care.
Abstract from DOAJ. Public domain (CC0 1.0).
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Anderson, J., Chinman, G., Cisneros, D., et al. (2026). Online Information About Cardiac Neurodevelopment: Mixed Methods Study. JMIR Pediatrics and Parenting. https://doi.org/10.2196/70630