Oser, Tamara K.

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.

Background: Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied.