Teams from Oxford, Edinburgh, Stirling, Aberdeen, Cambridge, and the Open University conducted several projects between 2020-22. These connected studies explored different dimensions of patient and family experience, and utilised interview-based methods to understand illness experiences, information and support needs and experiences seeking healthcare. They bring together findings of over 200 interviews conducted during the Covid-19 pandemic. Each study has an informative public-facing section on the website Healthtalk.org, where visitors can hear and learn from the experiences of other people living with Long Covid.
The four studies are:
Variation - Exploring diverse experiences of COVID-19, with a particular focus on minorities groups (Principal Investigator Sue Ziebland, ESRC funded)
Severity - Exploring experiences of COVID-19 patients (and their families) who were treated in ICU (Principal Investigator Lisa Hinton, THIS funded)
Duration - Exploring experiences of Long Covid in adults (Principal Investigator Kate Hunt, Chief Scientist Office Scotland funded)
Family dynamics – Exploring experiences of Long Covid in children, young people and their families (Principal Investigator Sue Ziebland, NIHR funded)
The launch was attended by study participants, research colleagues, support groups, policy makers, funders and other key stakeholders. Researchers officially launched their published collections, shared ideas, reflected on next steps, and provided a space for discussion with Professor Nisreen Alwan (University of Southampton) and Professor Trish Greenhalgh (Independent SAGE & University of Oxford).
“The first Long Covid Awareness Day coincided with the launch of the last of four Covid-related modules on Healthtalk.org, focusing on the impact of Long Covid in Families,” said researcher Cervantée Wild. “Today’s event really showcased the breadth of work undertaken by our team at PHC and across many other universities and we are so grateful for our participants who so generously shared their time, energy and experiences.”
Although most Covid-infected individuals encounter mild to moderate symptoms, or none at all, a significant number of people worldwide are dealing with what is now referred to as Long Covid. As of December 2022, approximately 2.2 million individuals in the UK alone are estimated to still experience symptoms more than four weeks after contracting Covid, and roughly 1.2 million individuals are still symptomatic one year after their Covid diagnosis.
An underlying thread throughout Wednesday’s event was the importance of qualitative research—alongside quantitative research—to understanding Long Covid. Long Covid is a newly emerging health condition, and as such, there is limited public understanding of its nature, symptoms, and impact on patients.
Qualitative research, such as that compiled on Healthtalk.org, enables researchers to gain insights into patients' differing experiences, perspectives, and needs, which can inform the development of interventions and treatments, as well as facilitate greater understanding of the impact Long Covid can have on patients’ daily lives, and that of their families and wider communities.
Researcher Anna Dowrick said “This event was important for recognising that inequalities persist in access to Long Covid diagnosis and support. It is vital that we continue to build partnerships through research with the communities, governments, and NHS organisations who can bring real change in the experiences of Long Covid.”
To learn more about the four studies discussed above, visit Healthtalk.org.