Navigating long COVID: a qualitative exploration of the emotional and psychological impact on young people and their families

Abstract

Long COVID is a debilitating, long-term health condition that was officially recognised in 2020 and has affected millions of people worldwide. Characterised by a wide range of fluctuating symptoms including tiredness, shortness of breath, problems with memory and concentration, muscle aches and pains, it has a significant impact on the lives of both adults and young people. Since the end of the pandemic, those suffering from the long-term effects of COVID-19 have often felt invisible, unheard, and forgotten within health and education systems. Chapter 1 sets the context for understanding Long COVID, highlighting the lack of representation of affected individuals in public discourse and emphasizing the need for further qualitative exploration of their experiences. This chapter also reflects on the personal and professional motivations of the researcher. Chapter 2 presents a systematic review of existing qualitative literature on the experiences of young people with Long COVID, analysing six papers published in recent years. Each paper was critically appraised for quality, and a thematic synthesis (Thomas & Harden, 2008) identified four main themes: facing disbelief and stigma, disruptions to school experiences, healthcare challenges, and navigating ongoing struggles. The review summarises key findings, discusses strengths and limitations, and offers suggestions for future clinical and research developments. Chapter 3 describes an empirical study exploring the experiences of young people with Long COVID and their parents, using semi-structured interviews and photovoice. Eleven participants shared their stories and reflected on the impact of Long COVID. The interviews were analysed using reflexive thematic analysis (Braun & Clarke, 2022), revealing four themes: disrupted childhood, changes in family life, the debilitating nature of a hidden illness, and healthcare journeys. The chapter discusses the implications of the study and provides recommendations for future research and clinical practice.

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Identifiers

ORCID for Julia Zaneta Domanska: orcid.org/0009-0003-7956-0528

ORCID for Judith Bruce-Golding: orcid.org/0000-0002-4865-7373

ORCID for Becky Ward: orcid.org/0000-0001-7703-8670

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