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

INTRODUCTION: ‘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.