Sudden Infant Death Syndrome on Facebook: Qualitative Descriptive Content Analysis to Guide Prevention Efforts

Background: Sudden unexpected infant death (SUID), which includes the diagnosis of sudden infant death syndrome (SIDS), is a leading cause of infant mortality in the United States. Despite prevention efforts, many parents continue to create unsafe infant sleep environments and use potentially dangerous infant sleep and monitoring devices, ultimately leading to sleep-related infant deaths. Analyzing Facebook conversations regarding SIDS may offer a unique maternal perspective to guide future research and prevention efforts. Objective: This study aims to describe and analyze conversations among mothers engaged in discussions about SIDS on a Facebook mother's group. We were interested in understanding maternal knowledge of SIDS, identifying information sources for SIDS, describing actual infant sleep practices, exploring opinions regarding infant sleep products and monitoring devices, and discovering evidence of provider communication regarding SIDS. Methods: We extracted and analyzed 20 posts and 912 comments from 512 mothers who participated in a specific Facebook mother's group and engaged in conversations about SIDS. There were 2 reviewers who coded the data using qualitative descriptive content analysis. Themes were induced after discussion among researchers and after the study objectives were addressed. Results: The theme of social support emerged, specifically informational and emotional support. A variety of informational sources for SIDS and safe sleep were identified, as was a continuum of infant sleep practices (ranging from unsafe to safe sleep per the American Academy of Pediatrics standards). There was widespread discussion regarding infant sleep products and monitoring devices. Embedded within conversations were (1) confusion among commonly used medical terminology, (2) the practice of unsafe infant sleep, (3) inconsistency in provider communication about SIDS, and (4) maternal anxiety regarding SIDS. Conclusions: We uncovered new findings in this analysis, such as the commonality of infant sleep products and monitoring devices and widespread maternal anxiety regarding SIDS. Additionally, mothers who participated in the Facebook group provided and received informational and emotional support regarding SIDS via this social media format. Such results can guide future prevention efforts by informing health communication regarding SUID and safe sleep. Future provider and public health agency communication on the topic of SUID and safe sleep should