Investigating Social Media Use by Young People to Self-Manage Type 1 Diabetes Mellitus: Large-Scale Analysis of Social Media Discussions Using Topic Modeling.

Résumé

BACKGROUND: Social media has shown promise in supporting young people with type 1 diabetes mellitus (T1DM) by providing information and emotional support. Although previous qualitative studies have investigated young people's self-reported use of social media for self-management, their patterns of actual use remain underexplored. Furthermore, different platforms may serve different functions or attract different types of engagement, making it important to examine how the patterns of actual use vary across them.OBJECTIVE: This study aimed to identify and describe the topics that young people with T1DM discuss online and to identify differences in content across platforms.METHODS: We collected data from Twitter and two forums (Reddit and Diabetes.co.uk) spanning from January 2020 to January 2024, identifying young people with T1DM using rule-based criteria and profile age information. An efficient analysis pipeline, integrating topic modeling with large language model (LLM) summarizing and human verification, was applied to identify the discussion topics.RESULTS: We analyzed 1765 tweets and 1259 forum posts by young people with T1DM and identified 24 topics. Among these topics, 7 (29.2%) were common across all platforms (Twitter and forums topic sizes, respectively): blood glucose management (n=70, 9%, and n=88, 16.6%), community and friendship (n=33, 4.3%, and n=51, 9.6%), COVID-19 (n=76, 9.8%, and n=13, 2.4%), diabetes and diet (n=81, 10.5%, and n=38, 7.2%), diabetes devices (n=97, 12.5%, and n=128, 24.1%), emotional and psychological expression (n=100, 12.9%, and n=124, 23.4%), and financial challenges (n=141,18.2%, and n=23, 4.3%). In addition, 7 (29.2%) topics were unique to Twitter: advocacy and awareness (n=35, 4.5%), diaversaries reflection (n=24, 3.1%), daily life and adaptation (n=27, 3.5%), misunderstanding of T1DM (n=25, 3.2%), educating and raising awareness (n=19, 2.5%), insulin prescription frustration (n=21, 2.7%), and experience with health care providers (n=25, 3.2%). Furthermore, 3 (12.5%) topics were unique to forums: diabetes complications (n=21, 4%), newly diagnosed and "honeymoon" experiences (n=21, 4%), and traveling with T1DM (n=24, 4.5%).CONCLUSIONS: Although our results confirmed social media's role in providing information and emotional and peer support, we also found that topics such as COVID-19, advocacy, and diabetes celebration are more frequently discussed in social media than in prior qualitative studies based on self-reporting. Platform-specific patterns are evident, with Twitter discussions being more immediate and experience driven, focusing on daily reflection, advocacy, awareness campaigns, and financial support, while forum-based platforms emphasize more in-depth discussions, where users seek and provide comprehensive advice, troubleshooting, and sustained peer support. Practitioners could consider the differences when designing digital interventions to ensure the delivery method aligns with the communication style and support needs of the target audience.