Shaping and sharing futures in brain injury rehabilitation

Abstract

The future is a tricky issue for the sciences because it has not happened yet and therefore is not 'fact' (see Adam and Groves 2007) to be studied. Nonetheless the future in and by its intangible nature acts upon us and is brought into the present, shaping both interactions and actions taken in the now. At the same time, futures are continually in the making and already made as actions past shape future lives to come. How futures are made then, how people’s lives to come are shaped, is both a social and political issue which requires attention. This thesis focusses on the lives of one particular group of people - those who have severe brain injuries. It explores how their futures are being shaped and negotiated, made and constrained by and through rehabilitation in a context of every day care delivery within independent neurological rehabilitative settings. This research draws on in-depth ethnographic data collected over five months at two neurological rehabilitation settings in England which includes interviews and broad and close observations of day-to-day happenings in the lives of around 60 brain injured residents, families and health care staff. The data was subject to a situational analysis (Clarke 2011), which is underpinned by grounded theory and discourse analysis, to foreground the collective multiplicity of actors in context. The findings highlight how patients’ futures are imagined depends upon their ability (or not) to demonstrate rehabilitative progress and are imagined in line with their fit to a ‘rehabilitative imaginary’. The dominance of this imaginary simultaneously negates the futures of those unable to fulfil it but enables the ‘good care’ of all in the present. Those that are considered marginal to care - ‘hotel service staff’ (cleaners, cooks, maintenance and administrative staff) are shown to be central to the making of futures of brain injured residents and how differences in the way in which patients’ futures are imagined by patients, their families and HCPs are shown to contribute to tensions between them. It contributes to the sociological literature by extending temporal analysis to this under-researched condition (brain injury), process (rehabilitation) and place(s) (independent neurological rehabilitation settings in the independent sector) and by illuminating how futures of brain injured residents are imagined and shaped by brain injured residents themselves, by families and HCPs working with them