Accepted for/Published in: JMIR Pediatrics and Parenting
Date Submitted: Mar 6, 2025
Open Peer Review Period: Feb 13, 2025 - Apr 10, 2025
Date Accepted: Apr 24, 2026
(closed for review but you can still tweet)
Online Information About Cardiac Neurodevelopment: A Mixed Methods Study
ABSTRACT
Background:
Infants 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 (OHIS) behavior to understand and support their child's health and development.
Objective:
This study describes the presence, nature, and presentation of information about neurodevelopment on the websites of congenital heart programs in the United States.
Methods:
This study used a mixed methods approach, specifically a convergent design. The presence and presentation of information about neurodevelopment on each program's website was correlated with state-level and program-specific factors extracted from multiple publicly available databases. Quantitative analysis methods included descriptive analyses, Student t-tests, Pearson chi-square tests, and multivariate logistic regression analysis, all performed using SPSS. Qualitative methods included both inductive and deductive content analysis.
Results:
Only 39% (50/129) programs provided any information about neurodevelopment online. High surgical volume correlated with the presence of online information (p<0.001). Websites were written at an average 7th to 10th grade reading level and fewer than 5% of websites had information in a language other than English. Two semantic clusters of website format, content, and element selection were identified, reflecting distinct approaches to adult learners. Programs clustered into "sage on the stage" and "guide on the side" formats. Few websites incorporated features caregivers have identified as useful with only 6% including all features.
Conclusions:
This study highlights the paucity of accessible caregiver-oriented information about neurodevelopment on the program websites of congenital heart programs in the United States. This lack may negatively impact caregiver understanding of and engagement with neurodevelopmental services for their child with a critical congenital heart defect. Clinical Trial: none
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