Journal of Patient Experience, Ahead of Print.
Social media increasingly reflects patient experience, especially for self-managed conditions. We examined family experience with type 1 diabetes (T1D) through qualitative analysis of blogs written by caregivers of children with T1D, survey derived from that analysis, and survey administration among T1D caregivers. Analysis of 140 blog posts and 663 associated comments identified 77 topics, which were categorized into self-management, emotional, challenges, and successes. By subcategory analysis, self-management challenges were strongly correlated between blog content and survey responses (R = .838, P = .005), and emotional challenges were moderately correlated (R = .415, P = .02). Emotional successes were not significantly correlated (R = .161, P = .511), and self-management successes were too few to analyze. The range of topics and the correlations between blog expressions and survey responses highlight the potential of blog analysis to gain insight into the challenges facing families living with T1D.