How children and young people construct and negotiate living with medical technology

Abstract

Increasing numbers of children need the support of medical technology for their survival and wellbeing, yet little is known about their experiences of living technology-assisted lives. This study aimed to explore how this group of children experience and construct medical technology and its influence on their identity and social relationships. Using a Grounded Theory approach, 28 children/young people aged between 8 and 19 years old and using different types of medical devices were recruited via nursing services in England. Data were collected by in-depth interviews conducted in children's homes. The medical technology occupied an ambivalent position in children's lives being seen as having both an enabling and disabling presence. Children actively engaged in work to incorporate the technology into their lives and bodies by developing strategies to manage their condition, the technology and their identities. This body work appeared to be driven by a desire to 'normalise' their bodies and their lives. Technologies were shaped to integrate them into everyday life and children managed their self-presentation and controlled information about their condition. This work was ongoing, responding to changing social contexts and relationships. For these children the process of 'growing up' involves incorporating disability, illness and technology. This study contributes to knowledge by examining how medical technology is constructed by children whose lives are dependent on it and illuminating the resources and strategies they use to manage their identity and negotiate peer culture interactions and norms.