Enhancing Epilepsy Awareness and Cooperative Care in Elementary and Middle Schools

Author:

Min Aehong1ORCID,Trueblood Miller Wendy R.2ORCID,Connelly Kay3ORCID,Nippert-Eng Christena4ORCID,Lin Hsien-Chang4ORCID,Shih Patrick C.4ORCID

Affiliation:

1. University of California, Irvine, Irvine, CA, USA

2. Indiana University, Indianapolis, IN, USA

3. Michigan State University, East Lansing, MI, USA

4. Indiana University Bloomington, Bloomington, IN, USA

Abstract

Epilepsy, a prevalent chronic neurological disorder, presents numerous challenges for people with epilepsy (PWEs) and their caregivers. They experience difficulties in receiving proper care and support due to stigma and misconceptions. Promoting public awareness in early education would be critical to reduce the stigma and to properly support them. We conducted 145 surveys and 21 interviews with teachers, school nurses, and parents of elementary and middle school students. While the participants exhibited slightly positive attitudes towards PWEs, we identified obstacles that hinder learning about epilepsy and seizure first aid: inadequate education and limited information sharing among school stakeholders. Moreover, there is a pressing need for age-appropriate education that considers the students' ages and perceptual levels. Considering the current limitations and needs, we propose potential implications for future information and communication technologies (ICTs) designs, including knowledge-sharing systems and an educational game aimed at enhancing epilepsy awareness and fostering collaborative care in elementary and middle school environments.

Funder

U.S. National Science Foundation

Publisher

Association for Computing Machinery (ACM)

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