Creative Long Covid: A qualitative exploration of the experience of Long Covid through the medium of creative narratives

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.


| INTRODUCTION
As described by Atherton et al., 1 healthcare is 'witnessing a new disease' with the emergence of Long Covid. Although debate remains in relation to the terminology associated with this condition, 2,3 the term Long Covid can be considered an umbrella term for clinical presentations that can be myriad in nature, severity and duration of symptoms. As clinical guidelines continue to be developed, 4,5 and specialist healthcare pathways established, 6-8 the narrative insights gained from those who have experienced Long Covid reflect a complex collection of symptoms, often unlike anything which had been experienced previously. 9 The importance of understanding the phenomenological interpretation of individual experiences is acknowledged both within research and healthcare practice. 10 As part of a broader narrative turn in recent decades, narratives are considered essential to the construction and reconstruction of the self; helping individuals to make meaning of their experiences and shape their identity. 11,12 These narratives are diverse, highly complex, linear, nonlinear, often creative, and importantly, can deliver vital information to inform clinical practice, give healthcare providers a greater understanding of the illness experience. The stories people tell are attempts at 'world making', 13 and valuable tools for articulating and understanding lifeaffecting illness experiences such as Long Covid.
In general, narratives about illness experiences have been recognized as essential components in a process, providing healthcare practitioners with insights into the context, meaning and lived experience of the individual. 14 However, this process of narration is often complicated, 15 especially following what might be considered the biographical disruption resulting from chronic or acute illness. 16 At such times, the act of narration is often orientated towards attempting to make meaning of the situation and understand why the illness has occurred, what caused it and how can it be addressed. 17 In attempting to narrate such experiences the arts and humanities can offer alternative ways of expressing embodied narratives, representing rich sources of meaning. 18,19 Moreover, the creation of art such as poetry, creative writing and music may offer a way to express traumaladen narratives which thus far have remained unsayable. 20,21 In attempting to support the narration of the unsayable, art can support in the process of discovering and meaning-making which can be essential at times of ill health. [22][23][24] Therefore, this paper will apply an interdisciplinary approach that bridges medicine, arts and the humanities to analyse arts-based patient narratives about Long Covid.

| Design and approach
The research adopted a narrative methodology, prioritising the narratives of individuals as a way to understanding their lived experience Frank 25 described illness as a 'call for stories' both in the sense of a need to describe the experience to others but also as a process of re-orientating and repairing the damage done by illness to the sense of who the person is and where they are going. Moreover, for healthcare professionals, individual or shared narratives can offer unique insights and enhance clinical practice by narrowing the distance between practitioner and service user. 26 Narrative research is often a multidisciplinary undertaking 27  Narrative research should seek to engage participants in the process of storytelling, 28 and this study sought to facilitate that storytelling process by establishing an online repository where stories could be collected and shared with the researchers. The opportunity to participate in the research was disseminated widely through social media and also posted within specific online forums dedicated to lived experiences of Long Covid. In an advertisement for the research, participants over the age of 16 were asked to submit their creative writings about their personal experiences of Long Covid, be it as a directly affected patient, as a carer or other.
The format of the online repository was developed in keeping with the values and practice underpinning narrative methodology, 29 and only contained one prompt which was 'Please can you use the space below to paste/write your creative written work'. These included short stories, poems, letters, diary entries or pieces of prose, all of which could be submitted directly into the online repository.
Participants were also provided with the option of emailing the research team directly if they wanted to share something which was not textual, such as an audio recording or song. 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 saturation is complex and difficult to define, 30 especially in relation to arts-based research, due to the potentially ambiguous nature of creative submissions. 31 However, this was felt to have been achieved once the codes produced from the data stabilized and no new themes were emerging from the data. 32 Moreover, the researchers felt that sufficient data had been collected to develop a robust understanding of the issues raised by participants. 33 Written consent was collected from all participants in keeping with best practices in online research. 34 All participants were provided with the participant information sheet as part of accessing the online repository, they then were required to click several boxes to indicate that they had read and understood the information and were happy to consent to take part in the research.

| Analysis
All the data were first organized into text format. For those pieces which were submitted as text, no changes were made to the documents. However, for those pieces which were submitted as audio files, such as a song, these were transcribed to ensure that they could be analysed consistently, alongside the other submissions.
The data were then subjected to thematic analysis following the framework of Braun and Clarke. 35 The first stage of this analysis is to familiarize oneself with the data and this was done as a whole team who met to review the data. During this first meeting, the research team each read aloud a submission. The team then discussed the submissions, and their experiences of reading or listening to these creative narratives. This reflexive process was particularly significant during this study, due to the interdisciplinary nature of the research, and thus reflexive practice can provide opportunities for the exploration of different perspectives and underlying assumptions. 36 Following this preliminary meeting, the initial coding of the data was undertaken by two members of the research team who analysed the data independently before meeting to review the codes that each had identified. These codes were then shared and refined into themes through a process of ongoing discussion with the wider research team.

| RESULTS
The results of the analysis identified five themes, which are as follows: Identity, social relationships, symptoms, interaction with healthcare systems and time. Table 1 details each theme and the codes that are comprised within it.

| Self and identity
The notion of self and identity can be conceptualized as the evolving life story which integrates our past and imagined future. 37 Participants spoke of the way in which the experience of Long Covid had required them to address the way in which they conceptualized themselves in relation to their illness. Several of the participants described feeling that pre-covid they were healthy people: Prior to Covid, I was healthy and loved my life Since that first attendance award at age 5 I've taken pride, in weathering common colds and tummy bugs, Participants also speculated about the future and whether this shift in identity might represent something more permanent: Will the old me come back?
Or will I always be this way? (Participant 3) Participants also spoke of their future and the way in which Long

| Social relationships
As humans are social beings, our social relationships and networks provide not only meaningful interpersonal contact but also help to foster and support our stable sense of self. 43  Can't they see that they don't feel the same?
Why is it so hard to understand?
Why is it so difficult to explain? (Participant 3) There was a sense also of the way in which the symptoms of  This resulted in some participants expressing a diminished sense of trust in the benefit of interactions with the healthcare system:

| Symptoms
Will there be a treatment?
I don't trust the system anymore.

| CONCLUSION
The participant narratives align with many of the symptoms described and present in NICE national guidance. 5 Fatigue and shortness of breath being the most common, but many others, including palpitations and neurocognitive symptoms also being reported. However, the data collected within this study suggest that some people may lack trust in the healthcare system, with participants often perceiving themselves as knowing more about their condition than the clinician working with them. This required further investigation as new healthcare pathways continue to emerge with general practitioners (GP) often playing a key role in the management of Long Covid. 55 Kingstone et al. 56 describe how finding the right GP is essential for people with Long Covid, emphasizing that listening, the use of empathy and understanding are a key part of the initial consultation. The relationship between a healthcare professional and an individual is well established as an essential component in any healthcare intervention and has been emphasized as crucial in supporting people experiencing Long Covid. 1,57,58 This study also highlights other symptoms and experiences,

DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.