New study aims to improve the support and care for people affected by 'long COVID'

Reviewed by Emily Henderson, B.Sc.Jan 28 2021

A new £375,000 study led by the University of Stirling is seeking to understand the lived experiences and support needs of people suffering from the long-term effects of COVID-19.

The research ultimately aims to improve the support and care available to those affected by 'long COVID' through the sharing of its findings with patients, their families and carers, and healthcare professionals.

The two-year study - which has received £299,883 in funding from the Scottish Government's Chief Scientist Office - will be led by Professor Kate Hunt, an expert in behavioral science and health, from the Institute for Social Marketing and Health (ISMH), and will involve colleagues from the University of Stirling, University of Aberdeen, University of Oxford, and the Nursing, Midwifery and Allied Health Professional Research Unit (NMAHP-RU).

COVID-19 is a new virus and stories in the media often focus on the number of deaths attributed to the virus or those who are hardly affected and recover quickly. This perception means that many who are experiencing long COVID feel disbelieved about the debilitating nature of their illness, and those outwith groups at heightened risk of death from the virus do not appreciate that long COVID also affects young, healthy, physically active people.

Our study will look at those suffering from prolonged symptoms - known as long COVID - to produce a reliable, evidenced online resource with practical information and support for those affected and their families and carers. We will also present information that can be used to train doctors, nurses, social care and other healthcare workers - and ultimately improve care to patients."

Professor Kate Hunt, Institute for Social Marketing and Health (ISMH)

Research on the lived experiences of people with long COVID is very limited, effective illness management pathways are not yet established, understanding of the illness is still evolving and long COVID clinics may not be easily accessible for all of those requiring them. The new study proposes a robust and accessible means to respond to these issues.

Highly experienced qualitative researchers will conduct and analyse detailed interviews with those living with long COVID - capturing information on their symptoms; how their lives have been impacted; the services they have used; and the information, support and care needs they have. They will also speak with those who have experienced critical or high dependency care due to the virus.

The research team will compare their findings with experiences of people with long COVID living in other countries, and with other studies. The findings - including video, audio and written excerpts from the interviews - will be freely available on healthtalk.org, which shares the stories of people living with health conditions. The website - run by The Dipex Charity - attracts millions of visitors each year and is recognised as a trustworthy source of patient experiences of health and illness.

Professor Hunt will work alongside Professor Louise Locock (University of Aberdeen); Ashley Brown (ISMH, University of Stirling); Professor Sue Ziebland (University of Oxford); Professor Pat Hoddinott (NMAHP-RU, University of Stirling); and patient research partner Callum O'Dwyer.