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Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study

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...

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Autores principales: 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, Jilka, Sagar
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8822432/
https://www.ncbi.nlm.nih.gov/pubmed/35072637
http://dx.doi.org/10.2196/30388
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author 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
Jilka, Sagar
author_facet 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
Jilka, Sagar
author_sort Hudson, Georgie
collection PubMed
description 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.
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spelling pubmed-88224322022-02-11 Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study 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 Jilka, Sagar JMIR Aging Original Paper 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. JMIR Publications 2022-01-24 /pmc/articles/PMC8822432/ /pubmed/35072637 http://dx.doi.org/10.2196/30388 Text en ©Georgie Hudson, Sonja M Jansli, Sinan Erturk, Daniel Morris, Clarissa M Odoi, Angela Clayton-Turner, Vanessa Bray, Gill Yourston, Doreen Clouden, David Proudfoot, Andrew Cornwall, Claire Waldron, Til Wykes, Sagar Jilka. Originally published in JMIR Aging (https://aging.jmir.org), 24.01.2022. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Aging, is properly cited. The complete bibliographic information, a link to the original publication on https://aging.jmir.org, as well as this copyright and license information must be included.
spellingShingle Original Paper
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
Jilka, Sagar
Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study
title Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study
title_full Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study
title_fullStr Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study
title_full_unstemmed Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study
title_short Investigation of Carers’ Perspectives of Dementia Misconceptions on Twitter: Focus Group Study
title_sort investigation of carers’ perspectives of dementia misconceptions on twitter: focus group study
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8822432/
https://www.ncbi.nlm.nih.gov/pubmed/35072637
http://dx.doi.org/10.2196/30388
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