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Exploring Online Support Needs of Adolescents Living with Epilepsy
Conference proceeding   Open access   Peer reviewed

Exploring Online Support Needs of Adolescents Living with Epilepsy

Afsaneh Razi, Jessica Medina, Jordyn Young and Wendy Trueblood Miller
CSCW '24: The 27th ACM Conference on Computer-Supported Cooperative Work and Social Computing, pp 558-568
13 Nov 2024
DOI: https://doi.org/10.1145/3678884.3681906
Featured in Collection :   Research Supported by Drexel Libraries' OA Programs
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https://doi.org/10.1145/3678884.3681906View
Published, Version of Record (VoR)Open Access via Drexel Libraries Read and Publish Program 2024CC BY V4.0,  Open

Abstract

Adolescence is a time characterized by great change, and for adolescents living with epilepsy (ALWE) these changes can be further exacerbated. While non ALWE often use social media as a resource for various concerns, a comprehensive understanding of concerns of ALWE is essential in improving online support. To understand the areas in which ALWE can benefit from improved social support, we collected posts from r/Epilepsy, identified 5,396 posts related to adolescents, and performed topic modeling. We discovered 18 topics of concern and created an affinity diagram to aid in the interpretation of overarching themes. Our work contributes to understanding topics on which ALWE seek online support and provides implications for future research and the design of technologies that can assist ALWE.

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