How young people experienced Long COVID services: a qualitative analysis
Authors: Taylor Olivia , Treneman-Evans Georgia , Riley Madeleine , Bond-Kendall Joanne , Pike Katharine 
Published: September 2024

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.

Key messages/Summary box

What is already known on this topic

The existing literature which explores adult experiences of Long COVID services is in agreement with this study in multiple ways. Firstly, it appears that clinician validation is very important to the clinician patient relationship (1-5). Peer support and building a Long COVID community for patients is also valued by individuals with Long COVID (1, 3, 5, 6), as are online appointments (1,3). Finally, long waiting lists to access Long COVID clinics are a barrier to care (1, 3). This can be mitigated to some extent by providing sign-posting or self-management resources while waiting for clinic access (3). However, the literature regarding paediatric experiences of Long COVID is limited. Two papers discuss the impact of a lack of reasonable adjustments on school (7,8) and the importance of validation through peer support (7).

What this study adds

To the best of our knowledge, there are no studies on Long COVID services for paediatric patients that highlight how patients experienced management of their condition. Our study highlights the patient’s desire to be proactive in their management, including being given opportunities to learn about Long COVID.

How this study might affect research, practice or policy

This study highlights recommendations for clinical practice. It is recommended to consider the following when designing specialist paediatric services for CYP with Long COVID: CYP with complex medical conditions want clinicians to validate their experience by acknowledging that their symptoms are real and their concerns are valid. Community-based groups for CYP experiencing the same condition are valued by patients, as are online flexible appointments, liaison with schools to provide early reasonable adjustments and rapid access to services for CYP. Future research should explore how these recommendations positively impact patients.