Not Just a Headache: Qualitative Study About Web-Based Self-Presentation and Social Media Use by People With Migraine.
eHealth
internet
migraine
qualitative research
self-management
social media
social support
Journal
Journal of medical Internet research
ISSN: 1438-8871
Titre abrégé: J Med Internet Res
Pays: Canada
ID NLM: 100959882
Informations de publication
Date de publication:
19 06 2019
19 06 2019
Historique:
received:
22
03
2018
accepted:
18
04
2019
revised:
15
06
2018
entrez:
21
6
2019
pubmed:
21
6
2019
medline:
9
4
2020
Statut:
epublish
Résumé
To help with a long-term but invisible medical condition such as migraine, many people seek information and support on social media. The effect of using social media for people with migraine is not fully understood and remains to be investigated. The aim of this study was to describe how people with migraine use social media and how social media use affects their identity and sense of self. A total of 20 participants who experienced migraine were recruited via migraine-specific charities. Semistructured interviews were conducted with questions based on a topic guide. Interviews were transcribed verbatim, and transcripts were analyzed using thematic analysis. People with migraine are using social media to obtain information to better understand their condition and treatment options. Social media offers instant access to continuous information and social support. This exchange of social support and information was viewed as mutually beneficial. Participants viewed social media as an outlet to vent frustrations and validate the migraine experience. Several participants pointed out that the invisible and episodic nature of migraine can lead to societal misunderstanding of the impact and or severity of their condition. Some participants masked their online migraine-related behavior using different sites or closed online groups to control who saw their migraine-related content. Participating in closed social media groups sometimes changed Web-based behavior in other areas of the platform. This illustrates the complex relationship between migraine, social media, and identity. How migraine is part of an individual's identity and how this is represented online can vary. Social media can provide people who experience migraine with instant and continuous access to support and information, from a group of empathic others with similar lived experiences. Social media is used to validate the illness experience, as well as provide reassurance and help reduce feelings of isolation.
Sections du résumé
BACKGROUND
To help with a long-term but invisible medical condition such as migraine, many people seek information and support on social media. The effect of using social media for people with migraine is not fully understood and remains to be investigated.
OBJECTIVE
The aim of this study was to describe how people with migraine use social media and how social media use affects their identity and sense of self.
METHODS
A total of 20 participants who experienced migraine were recruited via migraine-specific charities. Semistructured interviews were conducted with questions based on a topic guide. Interviews were transcribed verbatim, and transcripts were analyzed using thematic analysis.
RESULTS
People with migraine are using social media to obtain information to better understand their condition and treatment options. Social media offers instant access to continuous information and social support. This exchange of social support and information was viewed as mutually beneficial. Participants viewed social media as an outlet to vent frustrations and validate the migraine experience. Several participants pointed out that the invisible and episodic nature of migraine can lead to societal misunderstanding of the impact and or severity of their condition. Some participants masked their online migraine-related behavior using different sites or closed online groups to control who saw their migraine-related content. Participating in closed social media groups sometimes changed Web-based behavior in other areas of the platform. This illustrates the complex relationship between migraine, social media, and identity.
CONCLUSIONS
How migraine is part of an individual's identity and how this is represented online can vary. Social media can provide people who experience migraine with instant and continuous access to support and information, from a group of empathic others with similar lived experiences. Social media is used to validate the illness experience, as well as provide reassurance and help reduce feelings of isolation.
Identifiants
pubmed: 31219049
pii: v21i6e10479
doi: 10.2196/10479
pmc: PMC6607770
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e10479Informations de copyright
©Carly Pearson, Rosanna Swindale, Peter Keighley, Alison Ruth McKinlay, Leone Ridsdale. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 19.06.2019.
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