Experiences and care needs of children with long COVID: a qualitative study

Long COVID, the patient-preferred term, describes symptoms persisting after an acute episode of COVID-19 infection. Symptoms in children and young people (CYP) can affect daily routine, with broader impacts on education, health-related quality of life, and social activities, which may have long-term effects on health and wellbeing.

To explore the lived experiences and care needs of CYP with long COVID from the perspectives of CYP with long COVID, their parents, and professionals associated with the care of children and families living with the condition.

CYP and their parent or carer were invited for interview following participation in a cohort study, which recruited the sample from a primary care setting.

Interviews were carried out with four CYP with long COVID (all female, aged 10-17 years); three interviews included a parent. Two focus groups were conducted, which included seven professionals involved with care of CYP or long COVID, from a range of disciplines. Interviews and focus groups were transcribed verbatim, and data analysed thematically using constant comparison techniques.

The three main themes presented are as follows: living with long COVID; uncertainty surrounding long COVID; and seeking help for symptoms.

Long COVID can severely impact the lives of CYP and their families. CYP and their families need to be listened to by professionals and have any uncertainties acknowledged. It is imperative that agencies working with them understand the condition and its impact, and are able to offer support where needed.