How young people experienced Long COVID services: a qualitative analysis.

Abstract

Abstract Objective We aimed to evaluate how acceptable paediatric Long COVID services were to patients and clinicians. This paper focuses on how acceptable Long COVID services were to paediatric patients. Design This study was explorational. Semi-structured qualitative interviews with 13 paediatric patients were used to understand the experiences of patients with Long COVID. Setting Participants were recruited from specialist paediatric services in the Southwest of England from June 2022 to September 2023. Patients Participants were children and young people (CYP) aged 11-17 years old with a Long COVID diagnosis who accessed the specialist services in the Southwest of England. 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.