‘It's not really Michael who wears me out, it's the system’: The hidden work of coordinating care for a disabled child

Abstract

The parents, especially mothers, of disabled children play a crucial role in coordinating care for their children. This article investigates families’ coordination work using qualitative accounts of the parents of disabled children in Norway. The theoretical concepts of the third shift, hidden work and a broad definition of care are applied. We present a typology of coordination work, consisting of writing, meetings, administration of services, learning, monitoring and emotional work. We describe three cases to show the nature and consequences of having to coordinate the everyday lives of disabled children. The findings show that coordination work is gendered, individualised and taken for granted in service provision. We argue that coordination work should be better recognised in social policy design for these families to provide adequate services and avoid reproducing social inequality.