Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives, 2022, Pearson et al

[Andy]

Abstract

Background
Healthcare is witnessing a new disease with the emergence of Long Covid; a condition which can result in myriad symptoms, varying in frequency and severity. As new data are emerging to help inform treatment guidelines, the perspectives of those living with Long Covid are essential in informing healthcare practice. The research aimed to collect the narratives of people living with Long Covid to better understand the lived experience of this condition. In attempting to narrate complex or traumatic experiences the arts and humanities can offer alternative ways of expressing embodied narratives, representing rich sources of meaning. Therefore, the research specifically sought to elicit creative expressions from participants with lived experience of Long Covid.

Methods
Data were collected via an online repository where participants could submit their pieces of creative writing. Data were collected between August 2021 and January 2022 and a total of 28 submissions were received from participants. These were mostly written creative narratives. However, a small number were submitted as audio or video files of spoken word poetry or songs. Data collection was stopped once data saturation was achieved.

Results
The submissions were subjected to thematic analysis and five themes were generated. These five themes are Identity, social relationships, symptoms, interaction with healthcare systems and time. The results provide an insight into the experience of Long Covid as detailed by the participants' creative narratives.

Conclusion
The results from this study provide a unique insight into the lived experience of Long Covid. In relation to clinical practice, the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms.

Patient and Public Contribution
Before undertaking the research, Long Covid community groups were contacted to discuss the potential value of this study and it was widely supported. One of the leading Long Covid support groups was also involved in disseminating information regarding the project. As part of ongoing work within this project, members of the team are actively disseminating the results within Long Covid communities and seeking to develop arts-based workshops specifically for people with Long Covid.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/hex.13602

 

[Sean]

Healthcare is witnessing a new disease with the emergence of Long Covid;

 

[BrightCandle]

Healthcare is witnessing a new disease with the emergence of Long Covid;

If they admit that isn't true they also have to admit to 80 years of mistreatment that led to having no clue what to do with the mass of people now reporting the same condition. There is zero chance medicine, regardless of the evidence, ever admits to what it has done with ME/CFS and other conditions. They will call it Long Covid and treat you for that even if you never had Covid.

 

[Trish]

Healthcare is witnessing a new disease with the emergence of Long Covid;

I think it I reasonable to call ongoing disease following Covid-19 infection a new disease. Not all long covid is ME/CFS.

It would perhaps be better to refer to it as a collection of diseases, some new and Covid specific, as well as some which appear to be the same as existing diseases such as ME/CFS, which itself may be a collection of diseases with overlapping symptoms.

 

[RedFox]

It's pretty moving to see people's harrowing experiences recorded in a scientific paper. The study's authors capture it accurately.

It's so hard, when you spend an hour opening a herbal teabag,

These are among the worse moments in living with ME or LC because of how pathetic they make you feel. This week, it took me an entire day to write a shopping list. Most of which was spent trying to get up the energy/cognition/motivation to do it.

 

[Cheshire]

the results suggest that adjustment reaction and loss of sense of self could be added as common symptoms

These are not 'symptoms', they are consequences. And partly consequences of lack of care and consideration.