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.

Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response.

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 and 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.

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.

Usability inquiry of a gamified behavior change app for increasing physical activity and reducing sedentary behavior in adults with and without autism spectrum disorder.

The purpose of this study was to conduct the first usability inquiry of a gamified, behavior change theory-guided mobile app PuzzleWalk for increasing physical activity and reducing sedentary behavior in adults with and without autism spectrum disorder (ASD). Eighteen adults with and without ASD participated in a mixed-methods study that consisted of cognitive walkthrough, system usability assessment, and qualitative interviews. The results of the system usability testing indicated satisfactory quality of the PuzzleWalk system that can be readily applicable to both adults with and without ASD. Several notable issues were identified from the qualitative interviews that address critical insights into unique health and social needs in adults with ASD. Future work is warranted to examine the long-term effects of the PuzzleWalk system on increasing physical activity and reducing sedentary behavior in adults with and without ASD in real-world settings.

Can I Take a Break? Facilitating In-Home Respite Care for Family Caregivers of Older Adults.

Respite care can provide a chance for family caregivers to take a temporary and flexible break from their long-term caregiving work. Despite its beneficial aspects and value, there is little research on how technology might mitigate barriers to using respite care. The purpose of this paper is to understand the current practices and challenges that people face within the ecosystem of respite care work in the context of in-home care. Based on an in-depth interview study of 18 primary family caregivers, respite family caregivers, and respite professional caregivers, we identified different relationships, phases, and needs of each stakeholder and issues of trust and information sharing that need improvement. We discuss design considerations on how future information and communication technologies (ICTs) could mitigate the barriers identified in this work.