Search for: All records

Research on smart home monitoring for older adults has predominantly focused on systems whose data and alerts are directed towards family members, caregivers, or healthcare providers. Older adults have expressed interest in engaging with these systems by seeing and using their data, but they are often limited to a passive role as subjects of monitoring. This paper presents qualitative results of a longitudinal smart home project with older adults living independently in the community. Based on interviews conducted throughout the 2.5-year study with 12 participants, we report on their lived experiences of having the monitoring system in their homes and on how they reflected on the data collected by the system. The results show how participants were able to extract meaningful information from the monitoring data without finding the system invasive or intrusive. Specifically, older adults exhibited interest in data that they found indicative of living an active lifestyle, such as time spent outside the home. Drawing from critical literature on active aging, we discuss implications for incorporating peer comparisons to support reflection on personal health data without reinforcing a deficit narrative of aging. 

Digital research methodologies are driving a revolution in health technology but do not yet fully engage diverse and historically underrepresented populations. In this paper, we explore the ethical imperative for such engagement alongside accompanying challenges related to recruitment, appreciation of risk, and confidentiality, among others. We critically analyze existing research ethics frameworks and find that their reliance on individualistic and autonomy-focused models of research ethics does not offer adequate protection in the context of the diversity imperative. To meet the requirements of justice and inclusivity in digital research, methods will benefit from a reorientation toward more participatory practices. 

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.