Online Health Information Behaviors of People with Dementia – Contextual Inquiry
Based on what we learned in the self-management study, some everyday technologies which might provide assistance in managing their health were avoided by participants. For example, one participant described no longer using Google Search to find dementia-related health information because of the “preponderance of these bogus sites that are selling miracle cures” [Dixon, 2021]. This finding led to research questions concerning the health information behaviors of people with dementia. I took an Action Research approach, leading a mixed-ability team of researchers in conducting sixteen remote, one-hour contextual inquiry sessions with people living with mild to moderate dementia. Through a constructivist grounded theory analysis we uncovered ways participants with dementia use everyday technologies (e.g., search engines, online peer support groups, social media, online subscriptions, etc.) to facilitate their various health information behaviors. This work is published in JMIR [Dixon, 2022].
Barriers to Online Dementia Information and Mitigation
In this work, I investigate solutions individuals with dementia have already employed to inform the design of future technical approaches to address accessibility concerns. Through a constructivist grounded theory analysis of previously collected data from 16 contextual inquiry sessions with people with dementia, we uncovered four barriers to online health information and a variety of mitigation strategies participants’ employed for each. These findings and our discussion contribute to the literature by providing cognitive accessibility researchers with opportunities to design future technical interventions to make online health information more accessible and credible to neurodivergent populations. This work was published in the Proceedings of the 2022 CHI Conference on Human Factors in Computing Systems [Dixon et al., 2022].
How People with Dementia Configure Self-Management Systems
With trends showing an overall increase in chronic conditions, researchers in HCI have worked to design technologies to support individuals in managing their health through approaches such as medicalized self-tracking for health-related behavioral change. However, researchers in HCI have called attention to the ways such medicalized approaches ignore the mundane nature of health management for individuals living with neurodegenerative conditions. Further, these medicalized self-tracking technologies are not applicable to individuals living with neurodegenerative conditions with no medical treatment or lifestyle change to indefinitely stop the progression. To inform specific design considerations for health management technologies for users with neurodegenerative conditions, I conducted in-depth semi-structured interviews with 17 technologically savvy people with mild to moderate dementia. Our findings revealed the need to design future-oriented, sociotechnical, and self-determinate health management systems [Dixon, 2021].
Safe Enough to Share: Setting the Dementia Agenda Online
In this study, we investigated ways people living with dementia shape the online narrative around dementia through Dementia Diaries – a website which educates the public about dementia. Findings revealed tensions which arose concerning the needs of individuals with dementia to share their authentic “real and raw” experiences with the condition and the role of moderators, who were not living with dementia, to censure these posts to ensure that individuals with dementia do not say hurtful things or post things they will later regret [Lazar and Dixon, 2019]. To navigate these tensions moderators engaged closely with people with dementia both online and offline, to develop a sense of trust that they were looking out for the best interests of people with dementia. Based on these findings, we discuss ways to navigate tensions in stake-holder values in online platforms, such as by engaging with those disclosing sensitive health and disability information in sensitive ways to increase their sense of safety and comfort sharing on the platform. This work received an Honorable Mention Award at CSCW’19.
Emma Dixon 