Jordyn Young

Jessica Y. Medina, Jordyn Young, Aehong Min et al.

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.

Jordyn Young, Laala M Jawara, Diep N Nguyen et al.

Generative Artificial Intelligence (AI) is integrated into everyday technology, including news, education, and social media. AI has further pervaded private conversations as conversational partners, auto-completion, and response suggestions. As social media becomes young people's main method of peer support exchange, we need to understand when and how AI can facilitate and assist in such exchanges in a beneficial, safe, and socially appropriate way. We asked 622 young people to complete an online survey and evaluate blinded human- and AI-generated responses to help-seeking messages. We found that participants preferred the AI-generated response to situations about relationships, self-expression, and physical health. However, when addressing a sensitive topic, like suicidal thoughts, young people preferred the human response. We also discuss the role of training in online peer support exchange and its implications for supporting young people's well-being. Disclaimer: This paper includes sensitive topics, including suicide ideation. Reader discretion is advised.