Mapping the experiences of people with long-tail COVID

Written by Brigitte West & Cheryl Cheung

Over the last few months there has been increasing media coverage about post-COVID (also known as “long-tail COVID” or “long COVID”) and the ongoing symptoms – such as breathlessness, fatigue, sleep – that some people experience after an acute COVID-19 infection.

To help underpin the development of new products and services for people with post-COVID (including our own), we wanted to understand people’s different experiences through the creation of a post-COVID user experience map and share our findings with the wider community.

Background to our research

Back in early April 2020, we set up an online post-COVID hub and dedicated nurse led helpline (Whatsapp and phone) service to support people with post-COVID breathlessness and their families and help them get reliable information and dedicated support for their mental and physical recovery. 

We had heard from our network of respiratory specialists and researchers that there was likely going to be a group of people that had been in hospital with COVID-19 that would need ongoing respiratory rehabilitation support and at the time the NHS was not set up to provide this.

So, we set up the hub and whilst we knew very little about post-COVID, we expected that most people that would access the service would have been in hospital with COVID. However, the people  we heard from were the thousands of people who hadn’t been in hospital and had managed COVID at home. More than 50% (3000 survey respondents) told us they were struggling to cope with life after COVID-19 and are having ongoing difficulties.

“I believe it has completely changed me. I do not feel the same as I did before I had it. This illness is proving to be long term, I am taking every day slowly as it comes and overall getting better. This is week 12 now. However, I do get days where I constantly relapse and feel worse again.” – Female, aged 18-24

“Unexpected and frightening. Being under 40 years old, healthy and fit I would have expected to have fully recovered after 8 weeks. I’m on week 9 now and I’m nowhere near being back to my normal health and don’t even know when and if that will happen.” – Male, 35-44

Since April, we have been collecting insights (via the hub, post-COVID helpline and research partnerships) on the people’s experiences with post-COVID.  What quickly became clear was how individual the experience with post-COVID is. In addition to breathlessness, people told us about a wide range of symptoms – covering multiple clinical areas and many beyond the scope of AUK BLF’s post-COVID service.

‘I was  still really struggling with exhaustion, headaches, muscle and joint pain, weakness, shortness of breath, tingling in my limbs, sleep disturbances (violent twitches that wake me up, nightmares, humming in my sleep which often wakes me up, inability to get to sleep), brain fog and memory issues.’

The one commonality was that most people were struggling to access the right support. We wanted to analyse the insights we gathered to better understand the needs of people with post-COVID, to underpin the design of the right support services for them.

What we did

We sampled 207 responses from our post-COVID experience survey (between April to July), coded people’s experiences and then held a virtual mapping workshop to map out the overall picture and care received by a person with post-COVID.

To make sure we are looking at people’s experiences from as many different perspectives as possible, the team had 2 days prior to the meeting to individually immerse themselves in the raw data, coding and clustering things that stood out for each of us. This helped us to make full use of the group’s diverse thinking in forming the overall picture of a person with post-COVID.

Once the team had a broad variety of different and unique codes and clusters, we shifted our focus and came together in the virtual mapping workshop. The goal of the workshop was simple and clear – to look at all the different groupings and clustering one by one, discuss, compare and collectively piece together our understanding of the problem space and what was most important.

What we found

The workshop highlighted a few different areas of key insight and a pretty complex picture. To draw out all these insights in context, we decided that our map would need to be more than just a map. It would also need to clearly communicate our understanding of what we’ve learnt about the post-COVID area.

Below we’ve outlined our 3 key take home messages from our research.

  1. Interaction between person with COVID and healthcare system throughout their COVID journey

‘I am 13 wks from first symptom.  No support was offered by my G.P. in fact when I was having difficulty breathing they said they can’t do anything for me. That I was to call NHS111 (but I had already called them 3 times, with each time asking if I can walk to the bathroom or read a sentence from a book and if I could I was to ride it out at home).’

People told us about their varying experience with healthcare system and the importance of diagnosis – both in terms of post-COVID diagnosis and their longer-term prognosis – to them. Many people had their initial infection when testing for COVID-19 wasn’t widely available, creating a lot uncertainty around whether their symptoms were due to COVID-19, particularly before post-COVID was widely acknowledged. Whether it’s a mild, moderate or severe acute infection, the experience is a major health event in their life.

2. Unmet needs from post-COVID impact and adaption of post-COVID life

Another area of insights that we have identified are around the physical and psychological impact people are facing caused by the varying post-COVID symptoms they are experiencing (see below).Many described how post COVID changed their physical capability, their belief system and forcefully created a new normal that they had to quickly learn to adapt to. There are huge unmet needs in caring for people’s emotions and mental health after having such major health event in their life.

3. Variety and cyclical nature of symptoms

People with post COVID experienced a wide range of symptoms, covering multiple clinical areas and organ systems – respiratory, cardiology, neurology, endocrinology to name a few.

Many described their symptoms as cyclical (coming and going) and talked of making a “false recovery”.

Our findings demonstrate the complexity of post-COVID and scale of the unmet need. NHS and other support services will need to bridge often silo-ed specialities to develop holistic, person-centred products/ services that meet the needs of people with post-COVID. As we’re starting from scratch with the design of post-COVID-19 services, we have an incredible opportunity to get this right and work collaboratively – across sectors and disciplines – to make sure people get the support they need.  

What stood out to you most in our post COVID research? You can view our full experience map here.

We used Miro to do the user journey mapping (virtually), so we can share these research findings with anyone who’s interested in the post-COVID space. We’d love to hear your thoughts on our findings and any key areas that we’ve missed. 

Relevant links:

Map: https://miro.com/app/board/o9J_koup5-A=/

Post-COVID HUB: https://www.post-covid.org.uk/