Resident Physician Northwell Health Staten Island, New York, United States
Background: Parents of children with congenital heart disease often turn to social media platforms for support and advice. These online communities can provide a sense of belonging and comfort to parents who may feel isolated or overwhelmed by their child's diagnosis, and social media can be a valuable source of information for those parents. Though valuable, this public input should not be a substitute for professional medical advice. Objective: (1) Classifying the information and questions shared in a social media group for families of children with CHD; (2) Identifying knowledge gaps and emotional needs of CHD families. Design/Methods: This observational study analyzes posts on a popular Facebook group with over 14,500 users called "Children with CHD." Posts are evaluated for tone, timing, and perspective. We aim to analyze 1,000 posts in this group, excluding posts that are unrelated to CHD or posts that have been censored by moderators. For privacy, no identifiable data is collected, and data will be entered into a password-protected spreadsheet. This study has been deemed exempt from IRB approval. We use descriptive statistics to calculate all variables, including median and interquartile range for continuous variables and proportions with the corresponding two-sided 95% confidence intervals for categorical variables. Of the 103 posts analyzed so far, the majority were posted by mothers (95/103) of children with complex lesions (73/75). Commonly, they requested emotional support (34/103), medical advice (24/103), and gave child updates (16/103). Requests for medical advice varied but included questions about the care of surgical incisions, medication safety, cardiac symptoms, surgical complications, and the accuracy of diagnoses or plans made by healthcare providers. The median number of comments for posts asking for medical advice was six with three commenters self-identifying as healthcare providers. Most updates were positive, with 13/16 focusing on milestones such as a “Heartiversary” (surgery anniversary), while 3/16 announced the death of a child.
