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Investigation of carers’ perspectives of Dementia misconceptions on Twitter : focus group study
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Hudson, Georgie, Jansli, Sonja M, Erturk, Sinan, Morris, Daniel, Odoi, Clarissa M, Clayton-Turner, Angela, Bray, Vanessa, Yourston, Gill, Clouden, Doreen, Proudfoot, David, Cornwall, Andrew, Waldron, Claire, Wykes, Til and Jilka, Sagar (2022) Investigation of carers’ perspectives of Dementia misconceptions on Twitter : focus group study. JMIR Aging, 5 (1). e30388. doi:10.2196/30388 ISSN 2561-7605.
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Official URL: https://doi.org/10.2196/30388
Abstract
Background:
Dementia misconceptions on social media are common, with negative effects on people with the condition, their carers, and those who know them. This study codeveloped a thematic framework with carers to understand the forms these misconceptions take on Twitter.
Objective:
The aim of this study is to identify and analyze types of dementia conversations on Twitter using participatory methods.
Methods:
A total of 3 focus groups with dementia carers were held to develop a framework of dementia misconceptions based on their experiences. Dementia-related tweets were collected from Twitter’s official application programming interface using neutral and negative search terms defined by the literature and by carers (N=48,211). A sample of these tweets was selected with equal numbers of neutral and negative words (n=1497), which was validated in individual ratings by carers. We then used the framework to analyze, in detail, a sample of carer-rated negative tweets (n=863).
Results:
A total of 25.94% (12,507/48,211) of our tweet corpus contained negative search terms about dementia. The carers’ framework had 3 negative and 3 neutral categories. Our thematic analysis of carer-rated negative tweets found 9 themes, including the use of weaponizing language to insult politicians (469/863, 54.3%), using dehumanizing or outdated words or statements about members of the public (n=143, 16.6%), unfounded claims about the cures or causes of dementia (n=11, 1.3%), or providing armchair diagnoses of dementia (n=21, 2.4%).
Conclusions:
This is the first study to use participatory methods to develop a framework that identifies dementia misconceptions on Twitter. We show that misconceptions and stigmatizing language are not rare. They manifest through minimizing and underestimating language. Web-based campaigns aiming to reduce discrimination and stigma about dementia could target those who use negative vocabulary and reduce the misconceptions that are being propagated, thus improving general awareness.
| Item Type: | Journal Article | ||||||||||||
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| Subjects: | H Social Sciences > HM Sociology R Medicine > R Medicine (General) R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry |
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| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Medical personnel -- Attitudes, Social media, Disinformation, Alzheimer's disease -- Patients -- Public opinion | ||||||||||||
| Journal or Publication Title: | JMIR Aging | ||||||||||||
| Publisher: | JMIR Publications | ||||||||||||
| ISSN: | 2561-7605 | ||||||||||||
| Official Date: | 24 January 2022 | ||||||||||||
| Dates: |
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| Volume: | 5 | ||||||||||||
| Number: | 1 | ||||||||||||
| Article Number: | e30388 | ||||||||||||
| DOI: | 10.2196/30388 | ||||||||||||
| Status: | Peer Reviewed | ||||||||||||
| Publication Status: | Published | ||||||||||||
| Access rights to Published version: | Open Access (Creative Commons) | ||||||||||||
| Date of first compliant deposit: | 1 March 2022 | ||||||||||||
| Date of first compliant Open Access: | 1 March 2022 | ||||||||||||
| RIOXX Funder/Project Grant: |
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