How people with dementia use twitter: A qualitative analysis

Catherine V. Talbot; Siobhan T. O'Dwyer; Linda Clare; Janet Heaton; Joel Anderson

doi:10.1016/j.chb.2019.08.005

How people with dementia use twitter: A qualitative analysis

Catherine V. Talbot^*, Siobhan T. O'Dwyer, Linda Clare, Janet Heaton, Joel Anderson

^*Corresponding author for this work

Social Work and Social Care

Research output: Contribution to journal › Article › peer-review

29 Citations (Scopus)

Abstract

People with dementia are publicly sharing their experiences of living with the condition and acting collectively to produce social change. Social media could support them in doing this, but no previous studies have comprehensively analysed their use of Twitter. The aims of this study were to identify how people with dementia use Twitter and examine the illness identities they create and promote online. Tweetcatcher was used to collect 2774 tweets posted over six months by 12 account holders with dementia, across three countries. Tweets were analysed thematically. Six themes were identified through the analysis: nothing about us without us, collective action, experts by experience, living with dementia not suffering from it, community, and stories of dementia. On Twitter, people with dementia are developing a collective illness identity to further a social movement that is focused on improving the lives of people with dementia. They are also communicating their personal identities by documenting their lived experiences. Twitter is being used to convey positive, rather than negative, messages about dementia. The findings of this study also show that thematic analysis can be applied to micro texts that can combine over time to form longer narratives.

Original language	English
Pages (from-to)	112-119
Number of pages	8
Journal	Computers in Human Behavior
Volume	102
DOIs	https://doi.org/10.1016/j.chb.2019.08.005
Publication status	Published - Jan 2020

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr Siobhan O'Dwyer and Professor Linda Clare are supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health. We would like to thank the patient and public involvement group who advised on this project. Catherine Talbot would like to acknowledge Dr Catherine Quinn for her advice on the analysis and thank members of DataBee at the University of Exeter, particularly Jennie Hayes, Daisy Parker, Thomas Lister, and Helen Male for their comments on the data.

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr Siobhan O'Dwyer and Professor Linda Clare are supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC) . The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health.

Publisher Copyright:
© 2019 The Authors

Keywords

Activism
Advocacy
Alzheimer's
Identity
Narrative
Social media

ASJC Scopus subject areas

Arts and Humanities (miscellaneous)
Human-Computer Interaction
General Psychology

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10.1016/j.chb.2019.08.005

Cite this

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title = "How people with dementia use twitter: A qualitative analysis",

abstract = "People with dementia are publicly sharing their experiences of living with the condition and acting collectively to produce social change. Social media could support them in doing this, but no previous studies have comprehensively analysed their use of Twitter. The aims of this study were to identify how people with dementia use Twitter and examine the illness identities they create and promote online. Tweetcatcher was used to collect 2774 tweets posted over six months by 12 account holders with dementia, across three countries. Tweets were analysed thematically. Six themes were identified through the analysis: nothing about us without us, collective action, experts by experience, living with dementia not suffering from it, community, and stories of dementia. On Twitter, people with dementia are developing a collective illness identity to further a social movement that is focused on improving the lives of people with dementia. They are also communicating their personal identities by documenting their lived experiences. Twitter is being used to convey positive, rather than negative, messages about dementia. The findings of this study also show that thematic analysis can be applied to micro texts that can combine over time to form longer narratives.",

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note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr Siobhan O'Dwyer and Professor Linda Clare are supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health. We would like to thank the patient and public involvement group who advised on this project. Catherine Talbot would like to acknowledge Dr Catherine Quinn for her advice on the analysis and thank members of DataBee at the University of Exeter, particularly Jennie Hayes, Daisy Parker, Thomas Lister, and Helen Male for their comments on the data. Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Dr Siobhan O'Dwyer and Professor Linda Clare are supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula (PenCLAHRC) . The views expressed are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health. Publisher Copyright: {\textcopyright} 2019 The Authors",

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AU - Clare, Linda

AU - Heaton, Janet

AU - Anderson, Joel

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N2 - People with dementia are publicly sharing their experiences of living with the condition and acting collectively to produce social change. Social media could support them in doing this, but no previous studies have comprehensively analysed their use of Twitter. The aims of this study were to identify how people with dementia use Twitter and examine the illness identities they create and promote online. Tweetcatcher was used to collect 2774 tweets posted over six months by 12 account holders with dementia, across three countries. Tweets were analysed thematically. Six themes were identified through the analysis: nothing about us without us, collective action, experts by experience, living with dementia not suffering from it, community, and stories of dementia. On Twitter, people with dementia are developing a collective illness identity to further a social movement that is focused on improving the lives of people with dementia. They are also communicating their personal identities by documenting their lived experiences. Twitter is being used to convey positive, rather than negative, messages about dementia. The findings of this study also show that thematic analysis can be applied to micro texts that can combine over time to form longer narratives.

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KW - Narrative

KW - Social media

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JO - Computers in Human Behavior

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ER -

How people with dementia use twitter: A qualitative analysis

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

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