An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid, 2024, Leggat et al.

An exploration of the experiences and self-generated strategies used when navigating everyday life with Long Covid
Leggat, Fiona J.; Heaton-Shrestha, Celayne; Fish, Jessica; Siriwardena, Aloysius Niroshan; Domeney, Anne; Rowe, Carol; Patel, Ian; Parsons, Judith; Blair, John; Jones, Fiona

Around one in ten people who contract Covid-19 report ongoing symptoms or ‘Long Covid’. Without any known interventions to cure the condition, forms of self-management are routinely prescribed by healthcare professionals and described by people with the condition. However, there is limited research exploring what strategies are used to navigate everyday life with Long Covid, and experiences that initiate development of these strategies. Our study aimed to explore the range and influence of self-generated strategies used by people with Long Covid to navigate everyday life within the context of their own condition. Forming part of the Long Covid Personalised Self-managemenT support co-design and EvaluatioN (LISTEN) project, we conducted a qualitative study using narrative interviews with adults who were not hospitalised with Covid-19.

Participants aged over 18 years, who self-identified with Long Covid, were recruited from England and Wales. Data were analysed with patient contributors using a reflexive thematic analysis. Eighteen participants (mean age = 44 years, SD = 13 years) took part in interviews held between December 2021 and February 2022. Themes were constructed which depicted 1) the landscape behind the Long Covid experience and 2) the everyday experience of participants’ Long Covid.

The everyday experience comprised a combination of physical, emotional, and social factors, forming three sub-themes: centrality of physical symptoms, navigating ‘experts’ and the ‘true colour’ of personal communities, and a rollercoaster of psychological ambiguity). The third theme, personal strategies to manage everyday life was constructed from participants’ unique presentations and self-generated solutions to manage everyday life. This comprised five sub-themes: seeking reassurance and knowledge, developing greater self-awareness through monitoring, trial and error of ‘safe’ ideas, building in pleasure and comfort, and prioritising ‘me’. Among this sample of adults with Long Covid, their experiences highlighted the unpredictable nature of the condition but also the use of creative and wide ranging self-generated strategies.

The results offer people with Long Covid, and healthcare professionals supporting them, an overview of the collective evidence relating to individuals' self-management which can enable ways to live ‘better’ and regain some sense of identity whilst facing the impact of a debilitating, episodic condition.

Link | PDF (BMC Public Health) [Open Access]

 

Such emotive article/study to read, they truly listened to the people with Long Covid and captured the essence of living with it. Much recognition.

 

I came across the Listen project again a couple of times when it was mentioned on a LC Facebook group. First mention was someone at a clinic being given a book to read and then fill in his 'progress'.

The a webinar link was posted. https://www.listentrial.co.uk/

I was stuck i bed so attended. It was very vague and i am no further forward to understanding this. Apparently they had produced the book and sounded hopeful that they could sell this to other LC Clinics.

As they are championing a rehabilitation approach I have concerns. Is this likely to help LC? In many ways it sounds like a type of CBT.

https://www.csp.org.uk/news/2021-08-05-physios-long-covid-research-wins-ps11m-funding

https://www.bridgesselfmanagement.org.uk/

https://pubmed.ncbi.nlm.nih.gov/36726167/