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. 2021 Nov 29:7:20552076211059649.
doi: 10.1177/20552076211059649. eCollection 2021 Jan-Dec.

Long Covid: Online patient narratives, public health communication and vaccine hesitancy

Esperanza Miyake  1 , Sam Martin  2
Affiliations

Long Covid: Online patient narratives, public health communication and vaccine hesitancy

Esperanza Miyake et al. Digit Health. .

Abstract

Introduction: This study combines quantitative and qualitative analyses of social media data collected through three key stages of the pandemic, to highlight the following: 'First wave' (March to May, 2020): negative consequences arising from a disconnect between official health communications, and unofficial Long Covid sufferers' narratives online.'Second wave' (October 2020 to January 2021): closing the 'gap' between official health communications and unofficial patient narratives, leading to a better integration between patient voice, research and services.'Vaccination phase' (January 2021, early stages of the vaccination programme in the UK): continuing and new emerging concerns.

Methods: We adopted a mixed methods approach involving quantitative and qualitative analyses of 1.38 million posts mentioning long-term symptoms of Covid-19, gathered across social media and news platforms between 1 January 2020 and 1 January 2021, on Twitter, Facebook, Blogs, and Forums. Our inductive thematic analysis was informed by our discourse analysis of words, and sentiment analysis of hashtags and emojis.

Results: Results indicate that the negative impacts arise mostly from conflicting definitions of Covid-19 and fears around the Covid-19 vaccine for Long Covid sufferers. Key areas of concern are: time/duration; symptoms/testing; emotional impact; lack of support and resources.

Conclusions: Whilst Covid-19 is a global issue, specific sociocultural, political and economic contexts mean patients experience Long Covid at a localised level, needing appropriate localised responses. This can only happen if we build a knowledge base that begins with the patient, ultimately informing treatment and rehabilitation strategies for Long Covid.

Keywords: Covid-19; Long Covid; health communications < general; internet < general; online < general; self monitoring < personalised medicine; social media < media.

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Conflict of interest statement

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Figures

Figure 1.
Figure 1.
Social and mass media mentions of long Covid and related terms referring to long-term symptoms of Covid-19 (1 January 2020 to 1 January 2021).
Figure 2.
Figure 2.
Twitter type of mentions of long Covid and related terms referring to long-term symptoms of Covid-19 (1 January 2020 to 1 January 2021).
Figure 3.
Figure 3.
Key topics of concern regarding herd immunity and growing numbers of long haulers, symptoms of long Covid and related terms referring to long-term symptoms of Covid-19, and the impact of the Covid-19 vaccine(s).
Figure 4.
Figure 4.
Sentiment by source regarding mentions of Long Covid and related terms referring to long-term symptoms of Covid-19 (1 Jan 2020 to 1 Jan 2021).
Figure 5.
Figure 5.
Reddit and Forum mentions of long Covid and related terms referring to long-term symptoms of Covid-19 (1 Jan 2020 to 1 Jan 2021).
Figure 6.
Figure 6.
Sentiment regarding mentions of long Covid and related terms referring to long-term symptoms of Covid-19, first and second wave (1 Jan 2020 to 1 Jan 2021).
Figure 7.
Figure 7.
Collection of top emojis used in relation to posts mentioning long Covid and related terms referring to long-term symptoms of Covid-19, and discourse behind them.
Figure 8.
Figure 8.
Collection of top hashtags used in relation to posts mentioning long Covid and related terms referring to long-term symptoms of Covid-19 over first and second waves.
See this image and copyright information in PMC

References

    1. Centers for Disease Control and Prevention . Post-Covid Conditions, https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html?C... (accessed 13 September, 2021) The CDC’s information page states: ‘These post-COVID conditions may also be known as long COVID, long-haul COVID, post-acute COVID-19, long-term effects of COVID, or chronic COVID’.
    1. World Health Organisation (WHO). WHO Director-General’s opening remarks at the media briefing on COVID-19–21 August 2020, https://www.who.int/director-general/speeches/detail/who-director-genera... (2020, accessed 21 September 2021)
    1. Long-Term Effects of COVID-19 . Centre for Diseases Control and Prevention (CDC), https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects.html (2020, accessed 10 January 2021).
    1. Kalter L. Fauci introduces New acronym for long COVID at white house briefing. Medscape. https://www.medscape.com/viewarticle/946419. (2021, accessed 12 March 2021).
    1. The term, ‘Long Covid’ first appeared as part of online patient narratives, on Twitter by Elisa Perego. https://twitter.com/elisaperego78/status/1263172084055838721?s=20 (20 May, 2020, accessed 12 December, 2020). See also reference [50]

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