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

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.