Epilepsy Online Social Support: Characterizing Topics and Challenges Shared in the r/Epilepsy Community
For researchers and designers of health technologies, this work characterizes the topics and concerns of an online epilepsy community, offering a foundation for developing targeted support tools.
This study analyzed 23,944 posts from the r/Epilepsy subreddit using topic modeling and thematic analysis, identifying five major themes: symptoms/triggers, treatment/healthcare, daily functions, seizure activity, and support for PLWE. The findings provide insights into the challenges and social support needs of people living with epilepsy, with implications for designing self-management technologies.
Epilepsy is one of the most common neurological conditions, and people living with epilepsy (PLWE) often use social media as a resource. However, a comprehensive understanding of the topics represented in epilepsy-specific communities where PLWE may be more honest is essential to designing better technologies to address epilepsy self-management. To understand the main topics and concerns of PLWE, we collected 23,944 r/Epilepsy subreddit posts and performed topic modeling, thematic, and psycho-linguistic analyses. We found five major themes for those topics: symptoms and triggers (e.g., mental health and memory, sleep/nocturnal, and photosensitivity), treatment and healthcare experience (e.g., medication, understanding epilepsy), daily functions ( e.g., perceived level of independence and finances), seizure activity (e.g., auras and ictal symptoms), and support for PLWE (assisting PLWE and support for PLWE). We highlight the top psycho-linguistic characteristics of posts across different topics. Our contributions include providing an understanding of the challenges of an online epilepsy community and their social support needs, and implications for designing technologies.