9 research outputs found
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Understanding Contexts and Challenges of Information Management for Epilepsy Care.
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 effects, and stigma management. The sociotechnical issues of the information management contexts and challenges for epilepsy care may be mitigated through effective 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 finding 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
Where and How to Look for Help Matters: Analysis of Support Exchange in Online Health Communities for People Living with HIV
Research is scarce on how direct and indirect support seeking strategies affect support exchange in online health communities. Moreover, prior research has relied mostly on content analysis of forum posts at the post level. In order to generate a more fine-grained analysis of support exchange, we conducted content analysis at the utterance level, taking directness of support seeking, quality of provision, forum type, and seeker gender into account. Our analysis of four popular online support forums for people living with human immunodeficiency virus found that type of support sought and provided, support seeking strategy, and quality of emotional support provision differed in care provider/formal forums versus social/informal forums. Interestingly, indirect support seeking tended to elicit more supportive emotional responses than direct support seeking strategies in all forums; we account for this in terms of type of support sought. Practical implications for online support communities are discussed
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Enhancing Epilepsy Awareness and Cooperative Care in Elementary and Middle Schools
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
PuzzleWalk: A theory-driven iterative design inquiry of a mobile game for promoting physical activity in adults with autism spectrum disorder.
Primary symptoms of adults with autism spectrum disorder (ASD), such as pervasive social deficits in social interaction and communication, cause adults with ASD to adopt a sedentary lifestyle. Meanwhile, gamified and behavioral theory-based interventions have been shown to improve physical activity in a fun and unobtrusive way. In this paper, we describe the iterative design inquiry process of PuzzleWalk, a gamified, physical activity-promoting mobile app designed for adults with ASD. We report the design rationales and lessons learned across four user-centered design phases with ASD experts and adults with ASD, including user requirement gathering, iterative participatory design, usability evaluation, and field deployment. The design insights generated from this work could inform future research focusing on designing sociotechnical systems, games, and interventions for people with ASD
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