Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response
Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response
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及时：急救护理信息共享支持癫痫发作应对的挑战和机遇
DOI：
10.1145/3449187
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发表时间：
2021
影响因子：
--
通讯作者：
Shih, Patrick C.
中科院分区：
文献类型：
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作者：
Min, Aehong;Miller, Wendy;Rocha, Luis;Börner, Katy;Brattig Correia, Rion;Shih, Patrick C.
在美国，有超过300万癫痫患者，癫痫患者每天都面临多种挑战，如癫痫发作、社会孤立、社会耻辱、身体和情绪症状、药物副作用、认知和记忆缺陷、护理协调困难以及突然意外死亡的风险。在这项工作中，我们报告了从11名癫痫患者和护理人员的3个焦点小组和10个随访问卷中收集的结果。我们发现，这些参与者觉得大多数人不知道如何处理癫痫发作。为了提高他人对癫痫发作患者作出安全和适当反应的能力，癫痫患者和护理人员希望与公众分享和教育他们的癫痫病情，减少对癫痫发作的常见误解，防止相关的污名，并在需要时获得公众的急救帮助。考虑到社会耻辱感，我们提出了未来技术的设计含义，以便在癫痫发作时有效地向癫痫患者周围的旁观者提供适当的急救护理信息。
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 revisionand 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.