Paper Info
Title
Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response.
Abstract
There are over three million people living with epilepsy in the U.S. People with epilepsy experience multiple daily challenges such as seizures, social isolation, social stigma, experience of physical and emotional symptoms, medication side effects, cognitive and memory deficits, care coordination difficulties, and risks of sudden unexpected death. In this work, we report findings collected from 3 focus groups of 11 people with epilepsy and caregivers and 10 follow-up questionnaires. We found that these participants feel that most people do not know how to deal with seizures. To improve others' abilities to respond safely and appropriately to someone having seizures, people with epilepsy and caregivers would like to share and educate the public about their epilepsy conditions, reduce common misconceptions about seizures and prevent associated stigma, and get first aid help from the public when needed. Considering social stigma, we propose design implications of future technologies for effective delivery of appropriate first aid care information to bystanders around individuals with epilepsy when they experience a seizure.
Year
DOI
Venue
2021
10.1145/3449187
Proc. ACM Hum. Comput. Interact.
Keywords
DocType
Volume
bystander,caregiver,epilepsy,first aid,information sharing,seizure,social support
Conference
5
Issue
ISSN
Citations 
CSCW1
2573-0142
0
PageRank 
References 
Authors
0.34
0
6
Name
Order
Citations
PageRank
Aehong Min101.69
Wendy Miller200.34
Luis M Rocha300.34
Katy Börner41413125.36
Rion Brattig Correia500.34
Patrick C. Shih634131.06