Clin Child Psychol PsychiatryCCPClinical Child Psychology and Psychiatry1359-10451461-7021SAGE PublicationsSage UK: London, England10.1177_1359104524125246310.1177/13591045241252463Mental Health Services“People don’t have the answers”: A qualitative exploration of the experiences of young people with Long COVIDhttps://orcid.org/0000-0003-3078-7281NewlandsFiona1LewisCeline12d’OelsnitzAnais1Pinto PereiraSnehal M3StephensonTerence1https://orcid.org/0000-0003-0775-1045ChalderTrudie4CoughtreyAnna1DalrympleEmma1HeymanIsobel1HarndenAnthony5FordTamsin6LadhaniShamez N78https://orcid.org/0000-0002-6581-0165PowellClaire1https://orcid.org/0000-0003-4170-1498McOwatKelsey7BhopalRowan1DudleyJake1KolasinskaPaige1MuhidMohammed Z1NugawelaManjula1RojasNatalia K3ShittuAngel1SimmonsRuth7ShafranRoz1Population, Policy and Practice Department, UCL Great Ormond Street Institute of Child Health, UKNHS North Thames Genomic Laboratory Hub, Great Ormond Street Hospital for Children NHS Foundation Trust, UKDivision of Surgery & Interventional Science, Faculty of Medical Sciences, 4919University College London, UKDepartment of Psychological Medicine, Institute of Psychiatry, Psychology and Neuroscience, King’s College London, UKNuffield Department of Primary Care Health Sciences, 228157University of Oxford, UKDepartment of Psychiatry, 2152University of Cambridge, UKImmunisation Department, UK Health Security Agency, UKPaediatric Infectious Diseases Research Group, St George’s University of London, UKFiona Newlands, Population, Policy and Practice Department, UCL Great Ormond Street Institute of Child Health, University College London, 30 Guilford Street, London WC1E 6BT, UK. Email: fiona.newlands.18@ucl.ac.uk852024293783798© The Author(s) 20242024SAGE Publicationshttps://creativecommons.org/licenses/by/4.0/This article is distributed under the terms of the Creative Commons Attribution 4.0 License (https://creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).

Young people living with Long COVID are learning to navigate life with a constellation of poorly understood symptoms. Most qualitative studies on experiences living with Long COVID focus on adult populations. This study aimed to understand the experiences of young people living with Long COVID. Qualitative, semi-structured interviews were conducted (n = 16); 11 young people (aged 13–19) and five parents were recruited from the Children and Young People with Long COVID (CLoCk) study (n = 11) or its patient and public involvement and engagement (PPIE) group (n = 5). Thematic analysis generated four themes: (i) Unravelling Long COVID: Exploring Symptom Journeys and Diagnostic Dilemmas; (ii) Identity Disruption and Adjustment; (iii) Long COVID’s Ripple Effect: the impact on Mental Health, Connections, and Education; and (iv) Navigating Long COVID: barriers to support and accessing services. Treatment options were perceived as not widely available or ineffective, emphasising the need for viable and accessible interventions for young people living with Long COVID.

Plain language summary

Why was the study done? Capturing the broad impact of Long COVID and the experiences of young people and their families living with persisting symptoms will help to identify the unique needs and challenges experienced by this population and help shape effective treatments going forward. What did the researchers do? Researchers conducted interviews with children and young people living with Long COVID. Parents of young people were also invited to participate to gain a comprehensive understanding of the effects of Long COVID and its impact on the wider family. What did the researchers find? Analysis of 11 interviews with young people and 5 with parents revealed four themes central to young people’s experiences of living with Long COVID relating to unknowns and uncertainties, identity shifts, the impact of symptoms and accessing support. What do findings mean? Findings from the study suggest the implications of Long COVID were far-reaching and impairing. Current treatment options were not perceived as widely available or effective, suggesting a need for further research to develop effective interventions for young people living with Long COVID.

Children and young peopleLong COVIDqualitativeexperiencepost-COVID conditionNational Institute for Health and Care Research Children and Families Policy Research UnitPR-PRU-1217-21301NIHR Advanced Fellowship GrantNIHR300099National Institute for Health ResearchCOVLT0022Beryl Alexander Charity183885UK Medical Research Council Career DevelopmentMR/P020372/1typesetterts10