How young people experienced long covid services: a qualitative analysis.

ΒACKGROUND: After the COVID-19 pandemic, children and young people (CYP) with long covid were managed in specialist clinics. However, there is limited research on how CYP who accessed long covid clinics experienced them.

Methods: We aimed to evaluate how acceptable paediatric long covid services were to patients. Semi-structured qualitative interviews with 13 paediatric patients were used to understand the experiences of patients with long covid. Recruited participants were aged 11-17 years old, had a long covid diagnosis, and accessed specialist paediatric service in the Southwest of England from June 2022 to September 2023. Clinicians working in the long covid clinics identified CYP who were eligible and asked their consent to be contacted by a member of the study team. All participants who consented to be involved in the study were sampled. Thematic analysis was used to extract codes and themes from the data.

Results: Four themes were reported. Accessing specialist clinics helped CYP to feel validated; they appreciated consulting with clinicians who were knowledgeable about long covid and empathetic. CYP found comfort in knowing other CYP were experiencing long covid. CYP wanted to be proactive in their long covid management, appreciating regular appointments and the opportunity to learn about their condition. CYP desired normality, and therefore sought flexible appointment times, online appointments and reasonable adjustments. CYP found the waiting times to access long covid services were too long.

Conclusions: Our results stress the importance to CYP of several features of the care received in the specialist clinics. These relate to the experiences of CYP with long covid but potentially extend to CYP with other conditions, particularly long-term and/or poorly understood conditions. The results support creating community-based support groups for CYP with long-term medical conditions, providing online flexible appointments, offering early reasonable adjustments for school and providing quicker access to specialist clinics.