ArticleCSCW : proceedings of the Conference on Computer-Supported Cooperative Work. Conference on Computer-Supported Cooperative Work2019
Safe Enough to Share: Setting the Dementia Agenda Online.
Article in CSCW : proceedings of the Conference on Computer-Supported Cooperative Work. Conference on Computer-Supported Cooperative Work, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed.
- Endometriosis Communities on Reddit: Quantitative Analysis.Journal of medical Internet research · 2025Article
- Public and participant involvement as a pathway to inclusive dementia research.Alzheimer's & dementia : the journal of the Alzheimer's Association · 2025Article
- Menopause Legacies: Designing to Record and Share Experiences of Menopause Across Generations.Proceedings of the ACM on human-computer interaction · 2024Article
- The Human Need for Equilibrium: Qualitative Study on the Ingenuity, Technical Competency, and Changing Strategies of People With Dementia Seeking Health Information.Journal of medical Internet research · 2022Article
- Barriers to Online Dementia Information and Mitigation.Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference · 2022Article
- Understanding How Sensory Changes Experienced by Individuals with a Range of Age-Related Cognitive Changes Can Effect Technology Use.ACM transactions on accessible computing · 2022Article
- Investigating Best Practices for Remote Summative Usability Testing with People with Mild to Moderate Dementia.ACM transactions on accessible computing · 2021Article
- How Content Authored by People with Dementia Affects Attitudes towards Dementia.Proceedings of the ACM on human-computer interaction · 2021Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
CSCW research is increasingly interested in the ways that people use technology to discuss health and disability online. In addition to studying how people share information and seek and provide emotional support, a growing area of interest is health activism. In this paper, we analyze how a project centered around sharing "real and raw" experiences with dementia provides a safe platform for people to share their authentic experiences. These accounts counter predominant depictions of dementia and push back on tokenistic involvement of people with this condition. In a study involving observations and interviews with members of this project, we find that people with dementia must negotiate several goals which at times compete with each other: sharing a "real and raw" look at dementia, changing attitudes, showcasing a polished presentation, and inhabiting a safe space. The paper concludes with a discussion of future directions for CSCW on configuring a space for dialogue on sensitive topics, health activism, and sharing online with dementia.
Indexed as
Identifiers
32601621PMC7323863What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.