Long Covid: quantitative and qualitative analyses of online Long Haulers' experiences, emotions and practices in the UK

Miyake, E.; Martin, S.

RESEARCH QUESTION What are the experiences, emotions and practices of Long Haulers dealing with Long Covid symptoms and rehabilitation in the UK? AIMS & OBJECTIVES * to identify competing definitions of Covid-19 through quantitative and qualitative analyses of online Long Covid narratives in the UK; * to map UK Long Haulers' experiences, emotions and practices as articulated online; * to encourage further dialogue between patients, doctors and researchers to reassess existing definitions of Covid-19, with the collective aim of improving care and support for Long Haulers. DESIGN A rapid qualitative mixed methods study combining social media data (n=144,637 posts) with quantitative sentiment analysis and qualitative discourse analysis of themed post samples. SETTING Social media data studied were posts from people who self-reported having long-term symptoms of Covid-19. Data was analysed from the UK. All posts were anonymised to fit within ethics guidelines. No interventions were made. RESULTS Quantitative analysis found an output of 7,099 social media users who posted 144,637 posts. 27% of posts had negative sentiment, 12% were positive, 59% were neutral. The qualitative results demonstrate the negative impacts of competing definitions of Covid-19 for Long Haulers in the UK. These are mainly: time/duration; symptoms/testing; emotional impact; support and resources. CONCLUSIONS Through our analysis of UK Long Covid narratives online, we identify four main areas that need further urgent attention and reconsideration to improve support for Long Haulers: a) the time-frames assigned to Covid-19; b) the range of symptoms, which affects testing/diagnoses; c) the emotional/intellectual impact on Long Haulers; d) lack of resources and information.