Understanding Contexts and Challenges of Information Management for Epilepsy Care

被引：7

作者：

Min, Aehong ^{[1
]}

Miller, Wendy R. ^{[2
]}

Rocha, Luis M. ^{[3
,4
]}

Borner, Katy ^{[1
]}

Brattig Correia, Rion ^{[4
]}

Shih, Patrick C. ^{[1
]}

机构：

[1] Indiana Univ Bloomington, Bloomington, IN 47405 USA

[2] Indiana Univ, Bloomington, IN 47405 USA

[3] Binghamton Univ, Binghamton, NY USA

[4] Inst Gulbenkian Ciencias, Oeiras, Portugal

来源：

PROCEEDINGS OF THE 2023 CHI CONFERENCE ON HUMAN FACTORS IN COMPUTING SYSTEMS, CHI 2023 | 2023年

基金：

美国国家科学基金会; 美国国家卫生研究院;

关键词：

Epilepsy; Seizure; Information Management; Self-Managment; Information; Sharing; Information Monitoring; Design Framework; QUALITY-OF-LIFE; SELF-MANAGEMENT; CHRONIC DISEASE; HEALTH; OVERLOAD; CLASSIFICATION; COMMUNICATION; TECHNOLOGY; INTENTION; SEEKING;

D O I：

10.1145/3544548.3580949

中图分类号：

TP [自动化技术、计算机技术];

学科分类号：

0812 ;

摘要：

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 efects, and stigma management. The sociotechnical issues of the information management contexts and challenges for epilepsy care may be mitigated through efective 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 fnding 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.

引用

页数：15

共 138 条

[61] A community-targeted implementation of self-management for people with epilepsy and a history of negative health events (SMART): A research and community partnership to reduce epilepsy burden [J].