Vital yet Fragile: Informal Networks of Support Among Young People Navigating Long Covid

Young people living with Long Covid face challenges accessing health care and social support. Previous qualitative research in the UK has described the 'invalidation' of Long Covid illness experience. It has been said that there is a 'double invisibility' produced by narratives that minimise the effects of Covid-19 among young people, which combine with a generalised lack of awareness of Long Covid itself. In this analysis, we look beyond the well-documented networks of online self-help and advocacy to trace how young people navigate, connect and maintain multi-sited alternative care networks to manage their everyday experiences of Long Covid.

We draw on the analysis of qualitative interviews with 54 young people aged 15-25 with long-term health impacts from Covid-19, of whom 30 also participated in follow-up interviews. The sample includes young people with multiple genders, who identify with a range of ethnic identities, and who have experience of neurodiversity or additional disabilities. Interview transcripts were analysed to identify key themes, in collaboration with a group of peer researchers who are co-authors on this study.

We find that the informal networks that are navigated and created by young people play a vital role, but that they are also fragile. We present our findings across four themes-how informal networks afford young people validation in different ways; the material differences informal networks bring to young people's lives; the work that young people do to build and maintain these networks; and the fragility of support networks. We show that informal networks are not simply identified and found, but that they are 'made to work' by young people who do the work that brings informal networks together and that holds them in place.

We conclude that there is a need to strengthen the vital work of informal care that is done by young people, but that alternative care networks should not be seen simply as a means of 'filling the gaps' of inadequate care. There is a need to build infrastructures that properly integrate formal with informal care in direct response to young people's experiences of Long Covid.

This qualitative study was undertaken in close collaboration with community partners and co-produced with young people affected by Long Covid, using participatory methods. Young people affected by Long Covid were involved in a series of consultations, workshops and meetings focused on the analysis of data and their development into project outputs, including as authors of this paper.