thesis

Narratives of brain injury and self-management after hospital discharge

Abstract

Specific processes for supporting self-management, as prioritised in contemporary Western healthcare policy, generally focus on biomedical aspects of managing a condition that is constructed as a separate entity from the rest of a person’s life. However, uncertainties in supporting self-management for long term conditions like traumatic brain injury (TBI) persist, including a mismatch between patient and professional contexts, and under-theorisation of the concepts ‘self’ and ‘agency’. To better grasp these issues, I gathered accounts of TBI-related experiences since hospital discharge, using a qualitative longitudinal design. I specifically relied on narrative interviews with ten dyads, consisting of one person who had recently sustained a TBI and their chosen ‘significant other’ person, at two time intervals. I undertook iterative narrative analyses, initially identifying discourses portrayed by participants and tensions, conflicts or emotional connections across our interactions. I drew upon insights from Michael Bamberg’s positioning analysis of the self in brief moments of talk-in-interaction, and Judith Butler’s work on performativity, to explore how people are bound by positions or create possibilities within socially instituted and maintained norms and expectations. The findings illustrate how the subject position ‘you are your brain injury’ brings an agentive gap. The self is made and remade through co-constructed narrative scaffolds that shift in collaborative storytelling, enabling the (re)claiming of a desired sense of self. This research offers insights into dynamics of consistency and change, rather than the assumed disruption to the self, when cognitive and communicative functions alter following TBI. In conclusion, I suggest implications for healthcare professionals’ conceptualisation of supported self-management interactions. Rather than ‘having’ individualistic agency that is bolstered by the clinical intervention, agency is understood as a relational co-construction, offering a shift away from positioning of the ‘clinician as expert’ and opening possibilities to reaffirm a sense of self

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