Health Informatics

Epilepsy is a common neurological condition that causes unprovoked seizures. Epilepsy affects millions of people worldwide, however, the challenges of people living with epilepsy (PLWE) and how they seek support online are understudied. We seek to understand sociotechnical challenges and social support needs of people living with epilepsy (PLWE). we have investigated online social support seeking of PLWE for instance on characterizing topics and challenges shared in the r/epilepsy community, and about PLWE’s challenges, tools and practices, and hopes for the future epilepsy self-management technologies. We seek to understand caregivers’ challenges, explore how support is exchanged between the author and commentator, and understand how these findings vary within subpopulations such as adolescents and older adults. Contributions from this work include analysis of challenges discussed in an epilepsy online community and design implications for online social support for PLWE. 

Self-management refers to the set of behaviors that one must engage in to manage their chronic conditions on a daily basis. Epilepsy self-management is crucial for PLWE, research has shown that good self-management practices can improve the quality of life, self-esteem, and self-efficacy. Therefore, designing self-management technologies for PLWE can significantly improve quality of life. In this work, we conducted semi-structured interview studies to identify the current tools and technologies PLWE used for self-management and their hopes for future epilepsy self-management technologies