Online Information About Cardiac Neurodevelopment: 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-seeking behavior to understand and support their children's health and development.

Objective: In 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.

Methods: We 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 tests, Pearson chi-square test, and multivariate logistic regression analysis, all performed using SPSS (IBM Corp). Qualitative methods included both inductive and deductive content analysis.

Results: Only 39% (50/129) of programs provided any information about neurodevelopment online. High surgical volume correlated with the presence of online information (P<.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. Program websites clustered into "sage on the stage" and "guide on the side" formats. Few websites incorporated features caregivers previously identified as useful, with only 6% including the four most helpful features.

Conclusions: We 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.