Care ethics and brain injury

Abstract

It is generally supposed that a supportive family can have an influence on outcomes for an adult with severe brain injury, but there is very little known about what effective families actually do. In this research the families of five such individuals were involved in an ethnographic project that lasted for one year.

The literature review brought together insights from brain injury, care ethics, disability studies and anthropology. These insights were combined with a process of reflective equilibrium that was applied to the ethnographic material in order to determine the ethics of the carers. Ethics of care in this setting was conceived of as a positive practice ethic, rather than as a series of negative conundrums posed by the brain injury.

The practice ethic shared by carers meant that they all conceived of the need created by brain injury in humanistic terms, rather than in terms of pathology. Carers demonstrated virtues appropriate to their practice as they helped the adult with brain injury to connect with aspects of ordinary life. The best outcomes for the adult with brain injury included being able to engage in productive activity and to make a place in the world. These outcomes could only be achieved with due regard for their safety and subsistence. The practice ethic of carers was demonstrated in the skills and concern that ensured a satisfactory outcome for the adult with brain injury.

This research is a departure from recent research about families affected by brain injury, which has focused on the burden involved in care. An examination of what carers achieve suggests that burden may be associated with the development of caring practice. The transformative capacity of care, for both the carer and the adult with brain injury, is emphasized. However contextual factors, such as adequate compensation, are connected to the capacity of the carer to engage in good practice and these are explored also in this thesis. In particular, relevant aspects of the relationship between families and the Accident Compensation Corporation are explored.