JMIR Publications

ABSTRACT

Background:

Social media have 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:

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 modelling with large language model summarizing and human verification, was applied to identify the discussion topics.

Results:

We analyzed 1,765 tweets and 1,259 forum posts from young people with T1DM and identified 15 topics. Among these topics, we identified (1) Seven that were common across all platforms: blood glucose management, community and friendship, Covid-19, diabetes and diet, diabetes supplies, emotional and psychological expression, and financial challenges, (2) Five that were unique to Twitter : advocacy, celebrating diabetes, daily life and adaptation, educating others, and healthcare system interactions, and (3) Three topics unique to forums: diabetes complications, newly diagnosed experiences, travel and lifestyle adaptations.

Conclusions:

While our results confirmed social media’s role in providing information, emotion and peer support, we also found that unique topics such as Covid-19, advocacy, and diabetes celebration were more prominent in social media than in prior qualitative studies based on self-report. Platform-specific patterns were evident, with Twitter discussions were more immediate and experience-driven focusing on daily reflection, advocacy, awareness campaigns and financial support, while forum-based platforms emphasized more in-depth discussions, where users seek and provide comprehensive advice, troubleshooting, and seeking for 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.