Perceptions and Significance of Long Covid Diagnoses From the Perspectives of Children and Young People With Long Covid, Their Parents and Professionals.

INTRODUCTION

Long Covid, the patient-preferred term, describes symptoms persisting after an acute Covid-19 infection. Understanding the importance and meaning of a Long Covid diagnosis to children and young people (CYP), their families and professionals associated with their care can give insight into the way that these diagnoses are used across these groups to support care and needs of the patient. This study explores the meaning and importance of a Long Covid diagnosis from the perspectives of CYP with Long Covid, their parents and relevant professionals.

METHODS

CYP and their parents or carers were invited to interview following participation in an initial cohort study. Professionals with experience working with CYP with Long Covid were invited to participate in a focus group. Interviews were carried out with four CYP with Long Covid (all female, aged 10-17 years); parents were present at three interviews. Seven professionals with experience in the care of CYP or Long Covid participated in one of two focus groups. Data were analysed thematically using constant comparison techniques.

RESULTS

The three main themes presented are as follows: the importance of receiving a diagnosis, diagnosis facilitates access to support and perspectives of discordance between family and professionals. The diagnosis of Long Covid has different meanings and significance for parents and professionals. Families described the diagnosis as a legitimisation of their experiences and a way to access support, but professionals questioned some of the ways 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 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.

PATIENT OR PUBLIC CONTRIBUTION

Patients and the public contributed throughout this project and had input on the study design, topic guides, and dissemination of findings.