A Qualitative Study of Children’s Experiences of Living with Long-COVID

Authors: Camille Alexis-Garsee, Nicola Payne

Abstract:

One consequence of the pandemic has been the debilitating health impact that some people experience over a longer period of time, known as long-COVID. This has been predominately researched in adults; however, there is emerging evidence on the effects of long-COVID in children. Research has indicated over half of children who contracted COVID-19 experienced persistent symptoms four months after a confirmed diagnosis. There is little research on the impact of this on children and their families. This study aimed to explore the experiences of children with long-COVID, to enable further understanding of the impacts and needs within this group. Semi-structured interviews, facilitated by children’s drawings, were conducted with 15 children (aged 9-16, 9 females). Inductive thematic analysis was used to analyze the data. The findings tell a story of loss, change and of resilience. Many children were unable to engage in normal daily activities and were unable to attend school, however, all employed self-management techniques to cope with symptoms and were positive for the future. Four main themes were identified: (1) Education challenges: although some schools tried to accommodate the child’s new limitations with provision of flexi-attendance, online classes and a reduced timetable, children struggled to keep up with their schoolwork and needed more support; (2) Disrupted relationships: children felt socially isolated; they were forced to give up co and extra-curricular activities, were no longer in contact with friendship groups and missed out on key experiences with friends and family; (3) Diverse health-related challenges: children’s symptoms affected daily functioning but were also triggers for changes in thoughts and mood; (4) Coping and resilience: children actively engaged in symptom management and were able to ‘self-pace’ and/or employ distraction activities to cope. They were also focused on living a ‘normal’ life and looked to the future with great positivity. A key challenge of the long-term effects of COVID is recognizing and treating the illness in children and the subsequent impact on multiple aspects of their lives. Even though children described feeling disconnected in many ways, their life goals were still important. A multi-faceted approach is needed for management of this illness, with a focus on helping these children successfully reintegrate into society and achieve their dreams.

Keywords: children’s illness experience, COVID-19, long-COVID in children, long-COVID kids, qualitative research