Self-management for long-term conditions has become a prominent strand of healthcare policy internationally. Neoliberal values are evident in this discourse: a reduced role for the state and greater focus on individual responsibility. Drivers for efficiency savings also implicate self-management as a means for health improvement within constrained budgets. Resulting interpretations of self-management support have focus on interventions by healthcare staff, which intend to increase patients’ skills and confidence in managing their health condition. Traumatic brain injury (TBI) frequently brings long-term consequences but has received limited attention in self-management research. Support after TBI requires a broader conceptualisation of managing in everyday life, beyond
This research intends to explore stories told by people who have experienced TBI, and family members, about managing after hospital discharge. Through incorporation of socio-cultural and relational circumstances, I seek broader understandings of selfmanagement that may ultimately inform approaches to support by multidisciplinary healthcare professionals. I draw on Judith Butler’s theory of performativity to seek understandings of agency negotiated within shared experiences, challenges and tensions.
I use narrative inquiry, with an ontological assumption that narrative not only represents aspects of an experience, but becomes a form of experience. Following informed consent, I invited people who had experienced TBI to participate in open-ended discussion together with someone important to them, with one follow-up interview after six months. Narrative, longitudinal, dyadic interviewing enables exploration of shifting perspectives and of shared sense making in action. My interpretive analysis starts with
identification of story-lines of everyday identity work and agency, contextualised for each case study dyad. I apply Butler’s performativity as a theoretical resource to consider larger discourses, contradictions and struggles, within and across these narratives.
This analysis focuses on narratives from three case study dyads. Findings demonstrate the power relations that make a ‘disrupted’ identity intelligible, through dominant discourses that participants have encountered as ‘a person with TBI’ and the implication that ‘you have changed’. Participants seek to maintain a coherent narrative of self, in which revisions of norms following injury depend on relationships with others. Shared narratives determine effects of experiences for one another, becoming a means through which family members reshape norms collectively. ‘Self-managing’, not framed as an explicit intention, derives from iterative reconfiguring of responses within shared conventions. The narratives demonstrate ways that ‘self-crafting’ is continuously at work, through small scale reorganisations that can encourage different ways of being.
Underpinning self-management initiatives is an assumption that an individual's value of self is linked to their ability to continue to manage in the face of long-term adversity. This Western concept of self-interest contrasts with broader understandings that emphasise relationships with others. Through narrative inquiry with people after TBI and family members, this research extends conceptualisations of self-management beyond ‘disease control’ models and demonstrates ways that relationships can become constitutive of support for self-managing. Similarly, reiterations of professional norms and conventions may bring possibilities for their disruption, through which the biomedical narrative of self-management support becomes open to change.