The double invisibility of Long Covid in children

Citation

Wild C, MacLean A, Nettleton S, Hunt K & Ziebland S (2024) The double invisibility of Long Covid in children. Social Science & Medicine, 347, Art. No.: 116770. https://doi.org/10.1016/j.socscimed.2024.116770

Abstract
The Covid-19 pandemic has been dominated by discussions of mild and short-lasting cases or acutely serious or lethal forms of the disease; less attention has been paid to long-term Covid-19 symptoms (‘Long Covid’), particularly in children. This analysis of the experiences of children and adolescents with Long Covid, and those of their parents/caregivers, argues that children with Long Covid encounter a ‘double invisibility’ due to the condition's limited social currency and their status as the youngest members of society. We draw on 39 narrative interviews about children's and adolescents' experiences, conducted in 2021–2022 in the United Kingdom. The occurrence of Long Covid in children challenges key aspects of a dominant pandemic narrative, some of which have persisted from the early stages of the pandemic into 2023. Analysis of our qualitative interviews demonstrates that participant experiences were shaped and undermined by the convergence of three elements of the dominant pandemic narrative: that Covid-19 is mild, and everyone recovers; that children are not badly affected by Covid-19; and that worst of the pandemic was essentially ‘over’ as early as 2021/2022. In the face of these characterisations of Covid-19 experience, young people and their families reported significant additional challenges in making the illness experiences of children and adolescents visible, and thus in gaining appropriate support from medical and educational professionals. We interpret this in relation to ‘social currency’ - the extent to which an illness elicits understanding and acceptance by wider society. Children and adolescents with Long Covid struggled to signal the severity of their condition and elicit care in the manner expected for other debilitating illnesses. This was exacerbated by assumptions and stereotypes about unwell children and adolescents, and their parents, and questioning of their candidacy as reliable, trustworthy patients.

Keywords
Long covid; Qualitative; Children; Adolescents

Journal
Social Science & Medicine: Volume 347