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Negative attitudes shape experiences with stigmatized conditions such as dementia, from affecting social relationships to influencing willingness to adopt technology. Consequently, attitudinal change has been identified as one lever to improve life for people with stigmatized conditions. Though recognized as a scaleable approach, social media has not been studied in terms of how it should best be designed or deployed to target attitudes and understanding of dementia. Through a mixed methods design with 123 undergraduate college students, we study the effect of being exposed to dementia-related media, including content produced by people with dementia. We selected undergraduate college students as the target of our intervention, as they represent the next generation that will work and interact with individuals with dementia. Our analysis describes changes over the period of two weeks in attitudes and understanding of the condition. The shifts in understanding of dementia that we found in our qualitative analysis were not captured by the instrument we selected to assess understanding of dementia. While small improvements in positive and overall attitudes were seen across all interventions and the control, we observe a different pattern with negative attitudes, where transcriptions of content produced by people with dementia significantly reduced negative attitudes. The discussion presents implications for supporting people with dementia as content producers, doing so in ways that best affect attitudes and understanding by drawing on research on cues and interactive media, and supporting students in changing their perspectives towards people with dementia.
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The Human Need for Equilibrium: Qualitative Study on the Ingenuity, Technical Competency, and Changing Strategies of People With Dementia Seeking Health Information
Background Prior research on health information behaviors of people with dementia has primarily focused on examining the types of information exchanged by people with dementia using various web-based platforms. A previous study investigated the information behaviors of people with dementia within a month of their diagnosis. There is an empirical gap in the literature regarding the evolution of health information needs and behaviors of people with dementia as their condition progresses. Objective Our work primarily investigated the information behaviors of people with dementia who have been living with the condition for several (4 to 26) years. We also aimed to identify their motivations for changing their information behaviors over time. Our primary research questions were as follows: how do people with dementia get informed about their condition, and why do people with dementia seek information about their condition? Methods We adopted an action research approach by including 2 people with dementia as members of our research team. Collaboratively, we conducted 16 remote 1-hour contextual inquiry sessions with people living with mild to moderate dementia. During the study sessions, the first 40 minutes included semistructured interviews with participants concerning their information behaviors, followed by a 20-minute demonstration of their information-seeking strategies. Data from these interviews were analyzed using a constructivist grounded theory approach. Results Participants described their information needs in terms of managing the disrupted physiological, emotional, and social aspects of their lives following a diagnosis of dementia. They used various information behaviors, including active search, ongoing search, monitoring, proxy search, information avoidance, and selective exposure. These information behaviors were not stagnant; however, they were adapted to accommodate the changing circumstances of their dementia and their lives as they worked to re-establish equilibrium to continue to engage in life while living with a degenerative neurological condition. Conclusions Our research revealed the motivations, changing abilities, and chosen strategies of people with dementia in their search for information as their condition evolves. This knowledge can be used to develop and improve person-centered information and support services for people with dementia so that they can more easily re-establish equilibrium and continue to engage in life.
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- Award ID(s):
- 2045679
- PAR ID:
- 10352714
- Date Published:
- Journal Name:
- Journal of Medical Internet Research
- Volume:
- 24
- Issue:
- 8
- ISSN:
- 1438-8871
- Page Range / eLocation ID:
- e35072
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
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Accepted Manuscript1.0
- Journal Article:
- https://doi.org/10.2196/35072
