First Long COVID Resource for Patients Launched

The resource to help Long COVID patients and physicians involved in their care journey has been launched by University of Stirling experts.

Led by Professor Kate Hunt, a specialist in behavioral sciences and health at the Institute for //Social Marketing and Health (ISMH), the new online resource ‘Long COVID in Adults’ was developed by a team of researchers over two years, following detailed interviews with those living with Long COVID.

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‘Long COVID improves knowledge of what it is like to live with Long COVID and support and care for those people affected by COVID-19.’

The resource covers topics including people’s experiences of Long COVID, how they manage the condition day to day, seeking help from the GP, impacts on family, work and social life, the financial impact and medicines and therapies.

It includes video, audio and written extracts from interviews which bring to life the experience of living with Long COVID, as well as messages for health care professionals from those living with Long COVID, and their views on public understandings of the illness.

Long COVID Resource

It is published and freely available on healthtalk.org – a website run by the Dipex Charity – which attracts millions of visitors each year and is recognized as a trustworthy source of patient experiences of health and illness.

“Many people experiencing Long COVID feel disbelieved about the debilitating nature of their illness, and many members of the healthcare professions and public don’t appreciate that Long COVID can affect people of all ages and people who were very healthy and physically active people before they got COVID.”

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Dr. Alice Maclean, a specialist in patient experiences of illness, also based at Stirling’s ISMH, said “The resource, now available on healthtalk.org, can be used in training for doctors, nurses, social care and other healthcare workers – and ultimately improve care to patients.”

The resource is the result of a study funded by the Scottish Government’s Chief Scientist Office. The research team included experts from ISMH and the Nursing, Midwifery and Allied Health Professional Research Unit (NMAHP-RU), also based at the University of Stirling, as well as academics from the University of Aberdeen and University of Oxford.

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Researchers conducted in-depth interviews with 63 adults, with the youngest aged 20 and the oldest in their 80s.

Participant Tom, 52, continues to suffer with brain fog and ‘crippling’ fatigue many months after having COVID-19, and describes his symptoms as 'life-changing'. In a video which features in the resource, he says: “My life has been completely turned upside down, and the lack of medical support has been galling.”

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Sarah, 43, a mother of two, also recorded her experiences of the impact of Long COVID on family life for the website. Once able to juggle several part-time jobs, she is now only able to work one day a week due to her ongoing symptoms. She said: “I'm definitely trying to protect my children, although they are teenagers, I think it's really hard for them to understand [Long COVID] because it's hard for me to understand."

“Generally, when you get ill with flu or a stomach bug, you get better after a day or so and continue to do so, progress tends to be linear."

“With this not being like that, I think that's really hard for them to cope with. The fact that one day I can play table tennis with them and have a good time and then the next day I have to say no, I really can't. I don’t like the disappointment I can see in their faces.”

Source-Eurekalert