Research shines light on the profound effect of Long Covid on the lives of children and young people

New research from the Nuffield Department of Primary Care Health Sciences, the University of Oxford, and the universities of Stirling and Aberdeen funded by the National Institute for Health and Care Research (NIHR), has shone a spotlight on the profound effect Long Covid can have on children and young people’s school experience and wider lives. 

‘I have really bad meltdowns where I just want to be back to normal […] I do half days at school […] go in at like 11am, and I come home and I just, I’m crying [and] ‘I just want to be normal again,’ Said Mae, 11 years old, who had Long Covid for eight months at interview.

Published today in BMJ Open, this pioneering qualitative study explored the impact of Long Covid on children and young people’s experiences of school. The researchers carried out narrative interviews over video calls or telephone between October 2021 and July 2022. They engaged with 22 children and young people (aged 10-18) and 15 parents and caregivers of those aged 5-18 years, all dealing with the persistent aftermath of Covid-19 infection – Long Covid.

Participants were recruited through routes including social media, Long Covid support groups, clinicians, and community groups to capture a varied spectrum of experiences. The researchers particularly focused on what interviewees said about the impact of Long Covid on schooling and education.

The insights from the children and young people highlighted the pivotal role of school in returning to a ‘normal life’ after illness. However, returning to school was often a false hope, rather than a genuine return to normality. Extreme fatigue meant full school attendance was often a quick route back into illness. As one 13-year-old boy described: ‘I couldn’t really do anything [with friends] at break. I was just resting. I struggled going up the stairs. I can’t do PE. Yeah, I just feel tired after every lesson’.

For those managing to attend school part-time, juggling studies and social activities with enough rest to avoid making symptoms worse was a big challenge. A 16-year-old explained: ‘The hardest part is not being able to go to school or like see people my age, socialize and everything. It’s all like online for me now over like social media or messages […] seeing other people […] my age that are going out in school or doing all their exams [and] doing lots of things throughout the summer that I would like to be able to do, but I just can’t. I think that’s quite hard.’

Young people valued education highly but felt cut off from friends and stressed about falling behind due to frequent absences. Parents told of difficulties liaising with schools, particularly around getting validation about legitimate illness from already overburdened healthcare. School support varied drastically, spanning from skepticism to empathy and tailored adjustments.

This research clearly shows that absence from school due to Long Covid has a stressful and isolating impact on children and young people. The findings highlight the need for greater awareness and understanding of Long Covid in schools, and for tailored support to enable those affected to engage with school in a way that is manageable and not detrimental to their physical or mental health.’

Dr Alice MacLean, lead author and researcher, Institute for Social Marketing and Health, University of Stirling

Dr Cervantée Wild, co-author and Researcher based within Nuffield Department of Primary Care Health Sciences, University of Oxford said: ‘The findings highlight how much children and young people value school and education as part of normal everyday life. It is important to listen to the experiences of young people with Long Covid and use their voices to inform practical and achievable recommendations for how educational and healthcare professionals can support them.’

The authors call for the need for greater awareness of Long Covid in schools and targeted support for affected children, young people and their families.

Sue Ziebland, Principle Investigator for the study and Professor of Medical Sociology based within Nuffield Department of Primary Care Health Sciences, University of Oxford, said: ‘Our study provides practical recommendations for how healthcare and education professionals can better support children and young people in managing their Long Covid symptoms alongside school demands. These have the potential to improve experiences for young people with Long Covid and reduce pressures on their caregivers.

Listening to and validating the experiences of children and young people with Long Covid is vital.’

The researchers would especially like to thank all the children, young people and parents who took part in interviews, especially as many were still very affected by their Long Covid symptoms and had limited physical and cognitive resources.