Just In Time: Do You Know First Aid Care Information for Epileptic Seizures?
This post introduces the main findings of the paper: “Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response.” The authors of this paper are Aehong Min, Wendy Miller, Luis Rocha, Katy Börner, Rion Brattig Correia, and Patrick C. Shih. It is published in April 2021 in the PACMHCI Journal, Volume 5, Issue CSCW1, and will be presented at CSCW 2021 on Oct 26, 2021 (14:30–16:00 (ET)).
You might ever hear or learn CPR (cardiopulmonary resuscitation) and when and who needs it. Yes, you might know that it is for a person who is having a cardiac arrest. But do you know there are several types of seizures? And do you know how to provide first aid care to a person who is having a seizure? Maybe not.
The first aids for seizures are not well known among the public. For example, people might think a seizure makes one’s body shaken, and they need to hold a body to stop shaking. However, it is not right. You might just need to stay with them and move away from any harmful objects around them. (Learn about seizure first aid from CDC.)
People with epilepsy (PWEs) can live normally, but they experience an unprovoked seizure in their life. Depending on the types of seizures, they need others’ help to be safe. However, due to the lack of epilepsy awareness and knowledge, they and their primary caregivers (PWECs) are worried if they face improper treatment or receive inappropriate care (e.g., holding a shaken body, unnecessarily calling 911, etc.) from other people.
Our Study with People with Epilepsy and Their Caregivers
Regarding their concerns, we ran 3 focus group interviews with 11 participants and 10 follow-ups. From PWEs and PWECs, we could (1) understand the challenges of having seizures at different places and (2) explore the ways to help PWEs get proper and timely first aid care from other people.
Different Places, Different Challenges
We found and classified four places where PWEs have differently experienced challenges of having seizures. It is from one end of the comfort spectrum (i.e., home) to the other end (i.e., public area) before we delve into the more nuanced in-between places such as transportation and routinely visited places (i.e., workplace/school).
An individual’s home can be considered a comfort zone for PWEs and primary caregivers. However, other places like transportation and public places would not make them feel safer. PWEs are more likely to manage epilepsy in these more controlled and familiar environments.
If other people, such as bystanders, can provide appropriate first aid, that would be perfect. However, our participants believe that the general public does not know how to treat seizures. Moreover, delivering first aid care information to those bystanders in public places or transportations is challenging. Although people in their school or workplace might have more knowledge about the PWEs’ conditions as they meet the PWE in their routines frequently and regularly, PWEs and PWECs still face challenges (See Figure 1).
Seizure First Aid Care Framework
Based on our findings, we developed a framework regarding the environments and the available potential caregivers. It helped us get insights into designing future technologies to support epileptic seizure first aid information sharing with other people at different places.
For example, in the public area, bystanders can be potential caregivers. Future technologies can detect the exact type of a seizure and deliver the first aid information to the public quickly and simply. In the case of schools, peers and teachers can be potential secondary caregivers. They can get education for epilepsy first aid care in advance. However, future technologies should consider information burden and stigma.
For more details, see the paper here or the CSCW 2021 presentation video here. I would also be happy to talk more about this research. If you are interested, please contact me at aemin@iu.edu or @aehongmin (Twitter).
