A qualitative exploration of Symptom Patterns and Lived experience of Long-COVID in children and adolescenTs: the SPLaT-19 qualitative study

What is Long-COVID? 

Long-COVID describes the effects of a COVID infection lasting longer than four weeks. Adults with Long-COVID describe symptoms including tiredness, feeling short of breath and having pain. We know little about Long-COVID in children and young people (aged 8 to 17 years). 

What is the problem?  

We know from social media and visits to GPs and hospitals, that some children and young people get Long-COVID. Although most Long-COVID research is among adults, its effect on children and young people is now a ‘hot topic’. 

What are we going to do?  

We are going to carry out a study to understand how Long-COVID affects the lives of children and young people, so that we can make sure that suitable treatments and management plans are made.

We will interview children and young people who have had symptoms of COVID lasting for more than four weeks to find out about their experiences. We will ask about their symptoms and how the illness affected their lives. We will include their parent(s) or carer(s) in the discussions to understand the effect on the whole family. If the person is still experiencing symptoms or the effects of Long-COVID, we will offer them the chance to keep a diary, so we can learn more from them over a longer period of time. We will ask those that have recovered from Long-COVID, what helped them get better. We will also ask those who continue to have symptoms of Long-COVID, what might help them feel better. These questions will help us learn more about how to help children and young people with Long-COVID.

We will also hold a group discussion with adults, such as teachers, that work with children and young people, to see how they think COVID has affected children, young people and their families.

We will find families to invite to this study by asking GPs to identify children and young people who have had a test for COVID. Parents / carers of these children and young people will be sent an invitation to take part in a larger study that our team is carrying out into the longer-term effects of COVID in children and young people. If they agree to take part in this larger project, and tell us that their symptoms lasted longer than four weeks, we will invite them to take part in this interview study.

We will interview up to 20 children and young people, and their families. The interviews will be recorded, and the research team will analyse the discussions to put together a picture of the effects of Long-COVID on children and young people.

How will this help?  

Finding out about the experiences of children and young people who have had Long-COVID, and their ideas about what would help recovery, will help doctors learn more about the illness and how to care for affected children and young people. It will also help researchers understand what questions are important for them to try to answer in future studies.

How did patients and the public contribute to this proposal?  

The need for this study has come directly from families with children and young people affected by Long-COVID. Our 15-year-old public co-applicant helped develop all aspects of the study. This includes the study design, the short study name and the study logo. He will continue to advise us throughout the duration of the study to ensure it remains focussed on children and young people. We will get more help and advice from children and young people who have had long-COVID, as the study moves forward.

How will we share the results of this study?  

Results will be presented at national / international conferences and published in a medical journal. A plain English summary of the results will be shared through relevant young persons’ groups.  We will speak with our public co-applicants and advisors about how best to share the findings, for example, social media.

Co-applicant

Helen Twohig

Amount awarded: £90,221