Battling the Unknown: Portraying Lived Experiences of COVID-19 and Long-COVID

Coronavirus Disease-2019 (COVID-19) presented the world with a phenomenon that has been difficult to both understand and live with. Listening to, and being able to learn from, the day-to-day lived experiences of individuals who have had, and in some cases were still recovering from, COVID-19 was highlighted as a priority by the National Institute for Health and Care Research.

Our work used a novel story telling approach (composite vignettes) to explore the secondary, and often overlooked socio-psychological effects and their implications. The most common themes and experiences revealed during the analysis of the shared accounts, were used to create four descriptive experience portrayals. Each story, whilst representing the experiences of multiple participants, sought to give a single voice to a different experience trajectory, whilst capturing from the acute onset of symptoms through the ongoing recovery process (6–11 months post-infection), how COVID-19 and subsequent long-COVID shaped the individuals’ everyday lives.

Trapped on the COVID roller-coaster

Presenting the lived experience of COVID-19 and consequent long-COVID in participants’ own words, revealed the highly variable, but generally devastating, impacts COVID-19 has had across many facets of daily living. Taken together, this research provided an insight into different experience trajectories, which may enable more individually tailored treatments, on a population level to be provided.

Link to full text - Battling the unknown: Using composite vignettes to portray lived experiences of COVID- 19 and long-COVID