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Living with Covid19 - a different approach to emerging evidence

 

The latest NIHR Themed Review focuses on the long-term health impacts of Covid19, but without much published research available, what other types of evidence can we learn from? Jodi Brown from the Centre for Engagement and Dissemination explains the approach taken for this emerging topic.

Since the emergence of Covid19 in December last year much has been learnt about this virus. However, what is not clear is the long-term impact Covid19 infection can have on an individual’s health. I have noticed numerous mentions of ‘Long Covid’ in the news, but what does living with this syndrome look like, and what services and support do these people need?

One of the products we publish on our NIHR Evidence site is Themed Reviews, which draw together evidence on topics that are of strategic importance for the UK health and social care system. In the current climate, nothing seems more strategically important than ongoing Covid19 infection, often called ‘Long Covid’. This review initially intended to focus on rehabilitation services for ‘Long Covid’, however, as the process got underway and we gathered feedback it was clear there was a more complex picture. In addition, Themed Reviews usually rely on published research and for this topic there is very little, posing the question – were there other forms of evidence we could draw on?

Capturing the experience of ‘Long Covid’

Researchers have surveyed different groups of people and asked different questions, and much of what has been published is based on the experience of those who were admitted to hospital for care of their acute infection. This makes it impossible to integrate studies into a conclusive set of findings.

The research findings in the review are therefore complemented by the experience of people living with ongoing effects of Covid19 who have undertaken their own surveys and shared their experience on social media. Listening to the experience of those with ongoing Covid and pairing it with different types of available evidence (quantitative data, professional expertise and lived experience) gave us a real insight into what it is like to be living with this phenomenon, leading us to highlight four areas in particular.

First is the expectations around initial Covid19 infection. Particularly in the early months of the pandemic ‘mild’ cases of Covid19 were thought to last approximately two weeks, however, the focus group highlighted that this is not always the case. Covid19 can be cyclical, with symptoms moving round the different body systems and fluctuating in severity.

This symptom journey is the second area. The focus group felt there is a lack of understanding that people living with Covid19 can suffer from a wide range of interconnected symptoms, not limited to the ‘classic’ Covid symptoms we often hear about.

Relating to this symptom journey is the third aspect, being doubted. Because friends, family and healthcare professionals don’t recognise the pattern of symptoms in ‘Long Covid’, those in the group frequently felt their experiences were not believed and this left many feeling isolated and alone in coping with their disease.

Finally, this brings us on to support. Lack of diagnosis makes accessing services difficult. Again, as this phenomenon is not widely recognised many people in the focus group found it difficult to get support. Primary care, community and helpline staff need better training and knowledge about the ongoing effects of Covid19.

An unfinished review

This review draws together current evidence on, and captures the experience of, living with Covid19. Although little published research is available, listening to the testimony of people living with the ongoing effects of Covid19 provided rich insights for this review. Not only does it give an understanding of the personal experiences of living with Covid19, it also highlights where we should focus future research and the services needed to support this group of people. However, there is new information on this topic almost daily and we know this review is not comprehensive, nor is it complete.

By posting this incomplete version of now we hope to encourage a cycle of feedback and improvement. We are asking you, the reader, whatever your background, to share your evidence, experience and thoughts on our review. We will be updating the review in line with this feedback and we hope that by working together we will improve our collective understanding of living with Covid19.

How can you get involved?

  • Have you been living with Covid19? Does your experience match that of our focus group? We’d like to understand more and invite you to fill in this survey
  • Are you aware of any evidence we’ve missed in our Review on the nature and duration of ongoing symptoms? Or are there any resources for the public or healthcare professionals that could be added? Please let us know of any information at living-with-covid@nihr.ac.uk
  • Finally, the full ‘Living with Covid’ review is available to read online: and post about it on social media using the hashtag #LivingWithCovid.

Jodi Brown, Senior Stakeholder Engagement Manager, NIHR Centre for Engagement and Dissemination


The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.