Understanding Contexts and Challenges of Information Management for Epilepsy Care

Abstract

Epilepsy is a common chronic neurological disease. People with epilepsy (PWE) and their caregivers face several challenges related to their epilepsy management, including quality of care, care coordination, side effects, and stigma management. The sociotechnical issues of the information management contexts and challenges for epilepsy care may be mitigated through effective information management. We conducted 4 focus groups with 5 PWE and 7 caregivers to explore how they manage epilepsy-related information and the challenges they encountered. Primary issues include challenges of finding the right information, complexities of tracking and monitoring data, and limited information sharing. We provide a framework that encompasses three attributes --- individual epilepsy symptoms and health conditions, information complexity, and circumstantial constraints. We suggest future design implications to mitigate these challenges and improve epilepsy information management and care coordination.

Authors
Aehong Min
Indiana University Bloomington, Bloomington, Indiana, United States
Wendy Miller
Indiana University, Indianapolis, Indiana, United States
Luis M.. Rocha
Binghamton University, Binghamton, New York, United States
Katy Borner
Indiana University, Bloomington, Indiana, United States
Rion Brattig Correia
Instituto Gulbenkian de Ciência, Oeiras, Portugal
Patrick C.. Shih
Indiana University Bloomington, Bloomington, Indiana, United States
Paper URL

https://doi.org/10.1145/3544548.3580949

Video

Conference: CHI 2023

The ACM CHI Conference on Human Factors in Computing Systems (https://chi2023.acm.org/)

Session: Health Data and Tracking

Room Y07 + Y08
6 items in this session
2023-04-26 14:30:00
2023-04-26 15:55:00