The importance of diagnosis from the perspectives of young people with Long COVID, their parents, and healthcare professionals

Faux-Nightingale, Alice; Saunders, Benjamin; Burton, Claire; Chew-Graham, Carolyn A; Somayajula, Glenys; Twohig, Helen; Welsh, Victoria

Abstract

Background Long COVID describes symptoms persisting after an acute COVID-19 infection.

Aim This study explores the meaning and importance of a Long COVID diagnosis from the perspectives of children and young people (CYP) with Long COVID, their parents, and relevant professionals.

Method CYP and their parents were invited to interview from an initial cohort study. Professionals with experience of working with CYP or those with Long COVID were invited to a focus group. 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 with seven relevant professionals from varying disciplines. Data were analysed thematically using constant comparison techniques.

Results Analysis identified the following themes: Diagnosis as a label; No diagnosis, no certainty; Diagnosis facilitate access. Stigma of Long COVID pervaded all themes. The diagnosis of Long COVID has different meaning and significance for parents and HCPs. Families described the diagnosis as a legitimisation of their experiences and a way to access support, but professionals questioned some ways that families use the diagnosis, focusing instead on appropriate treatment according to CYP’s needs.

Conclusion For families, Long COVID diagnoses are important for validating and legitimising symptoms, removing uncertainty, and supporting access and participation, particularly in school. While these uses differ from those of healthcare professionals, understanding the importance of a Long COVID diagnosis to families may ensure effective communication, negotiation of an acceptable management plan, and ongoing support for this group.

Citation

Faux-Nightingale, A., Saunders, B., Burton, C., Chew-Graham, C. A., Somayajula, G., Twohig, H., & Welsh, V. (2025, March). The importance of diagnosis from the perspectives of young people with Long COVID, their parents, and healthcare professionals. Presented at BJGP Research and Publishing conference, The Lowry Hotel, Manchester, England

• Presentation Conference Type: Presentation / Talk
• Conference Name: BJGP Research and Publishing conference
• Start Date: Mar 21, 2025
• Acceptance Date: May 22, 2025
• Online Publication Date: May 22, 2025
• Publication Date: May 22, 2025
• Deposit Date: Jun 9, 2025
• Journal: British Journal of General Practice
• Print ISSN: 0960-1643
• Electronic ISSN: 1478-5242
• Publisher: Royal College of General Practitioners
• Peer Reviewed: Peer Reviewed
• Volume: 75
• Issue: suppl 1
• DOI: https://doi.org/10.3399/bjgp25x741765
• Public URL: https://keele-repository.worktribe.com/output/1277439
• Publisher URL: https://bjgp.org/content/75/suppl_1/bjgp25X741765