Trajectories of care and changing relationships : the experiences of adults with acquired brain injuries and their families
This PhD thesis explores issues around acquired brain injury, focusing particularly on changing relationships between patients and carers and the trajectories they follow from the point of injury or diagnosis as a reconstructed life unfolds. Patients are identified as having strategies of adaptation and carers as taking on levels of agency, both of which shift according to time, context and other complex interactions. Each impacts on the other to produce an internal dynamic, the functionality of which is explored. Issues of care delivery are also raised, including the effects of mismatched expectations and of sharing or restricting information. This research is qualitative and based on the principles of grounded theory. 62 interviews were conducted involving 82 people (52 patients and 30 carers) and additional evidence was gathered from professional records, media reports and personal diaries. Themes were developed that can be linked together to form a trajectory of care, inside of which there is a finely balanced ecology. It is proposed that this trajectory although developed around data from people with brain injury is also applicable to other chronic conditions.