Disrupting 'Self-Management': Broadening Understandings Through Narratives of Traumatic Brain Injury

Makela, P. 2018. Disrupting 'Self-Management': Broadening Understandings Through Narratives of Traumatic Brain Injury. 17th Biennial European Health and Medical Sociology Society Conference. Univeristy of Lisbon (ISCTE), Portugal 06 - 08 Jun 2018

TitleDisrupting 'Self-Management': Broadening Understandings Through Narratives of Traumatic Brain Injury
AuthorsMakela, P.
TypeConference paper
Abstract

Background
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
biomedical parameters.

Objectives
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.

Methods
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.

Results
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.

Discussion
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.

KeywordsNarrative, brain injury, self-management, identity
Year2018
Conference17th Biennial European Health and Medical Sociology Society Conference

Related outputs

Narratives of brain injury and self-management after hospital discharge
Makela, P. 2019. Narratives of brain injury and self-management after hospital discharge. Prof Doc Thesis University of Westminster School of Life Sciences

Comprehensive Geriatric Assessment in hospital and hospital-at-home settings: a mixed-methods study
Godfrey, M., Gardner, M., Shepperd, S., Mäkelä, P., Tsiachristas, A., Singh-Mehta, A., Ellis, G., Khanna, P., Langhorne, P., Makin, S. and Stott, D.J. 2019. Comprehensive Geriatric Assessment in hospital and hospital-at-home settings: a mixed-methods study. Health Services and Delivery Research. 7 (10). https://doi.org/10.3310/hsdr07100

Supporting self-management after traumatic brain injury: Codesign and evaluation of a new intervention across a trauma pathway
Makela, P., Jones, F., de Sousa de Abreu, M.I., Hollinshead, L. and Ling, J. 2019. Supporting self-management after traumatic brain injury: Codesign and evaluation of a new intervention across a trauma pathway. Health Expectations. 22 (4), pp. 632-642. https://doi.org/10.1111/hex.12898

A protocol for the process evaluation of a multi-centre randomised trial to compare the effectiveness of geriatrician-led admission avoidance hospital at home versus inpatient admission
Makela, P., Godfrey, M., Craduck-Bamford, A., Ellis, G. and Shepperd, S. 2018. A protocol for the process evaluation of a multi-centre randomised trial to compare the effectiveness of geriatrician-led admission avoidance hospital at home versus inpatient admission. Trials. 19, p. 569 569. https://doi.org/10.1186/s13063-018-2929-4

Comprehensive Geriatric Assessment in Hospital or at Home? The role of clinician uncertainty in recruitment to a randomised controlled trial
Hindley, E, Makela, P. and Shepperd, S 2018. Comprehensive Geriatric Assessment in Hospital or at Home? The role of clinician uncertainty in recruitment to a randomised controlled trial. Oxford Academic. https://doi.org/10.1093/ageing/afy121.08

'She doesn’t want to go to hospital. That’s one thing she hates’: Collective performativity in avoidable nursing home to hospital transfers
Makela, P. 2018. 'She doesn’t want to go to hospital. That’s one thing she hates’: Collective performativity in avoidable nursing home to hospital transfers. Journal of Evaluation in Clinical Practice. 24 (5), pp. 1041-1048. https://doi.org/10.1111/jep.12985

Can Butler's theory of performativity be applied to (re)construction of identity after traumatic brain injury?
Makela, P. 2017. Can Butler's theory of performativity be applied to (re)construction of identity after traumatic brain injury? BSA 49th Medical Sociology Annual Conference 2017. University of York 13 - 15 Sep 2017

"They brought you back to the fact you're not the same": Sense of self after traumatic brain injury
Makela, P. 2017. "They brought you back to the fact you're not the same": Sense of self after traumatic brain injury. Subjectivity. 10 (4), pp. 358-373. https://doi.org/10.1057/s41286-017-0036-8

Blog: The role of listening to people’s stories in supporting self-management
Makela, P. 2016. Blog: The role of listening to people’s stories in supporting self-management.

From ‘cocoon to the real world’ after traumatic brain injury: A narrative case study
Makela, P. 2016. From ‘cocoon to the real world’ after traumatic brain injury: A narrative case study. Experiences of illness and death: learning from the discourses of realities and fictions. Durham University hosted at The Open University 28 - 28 Nov 2016

Narratives of traumatic brain injury and self-management following hospital discharge
Makela, P. 2016. Narratives of traumatic brain injury and self-management following hospital discharge . British Sociological Association 48th MedSoc Annual Conference 2016. Aston University, Birmingham 07 - 09 Sep 2016

‘I knew it wasn’t me but I was told it was’ - the broken self after brain injury and unbroken counter-stories
Makela, P. 2016. ‘I knew it wasn’t me but I was told it was’ - the broken self after brain injury and unbroken counter-stories . Broken Narrative and the Lived Body. University of Monash @ Prato 18 - 20 Apr 2016

Traumatic brain injury: the challenge of post-acute management within trauma networks
Makela, P. and Tolias, C 2015. Traumatic brain injury: the challenge of post-acute management within trauma networks. Commentary. 5, pp. 26-27.

Starting early: integration of self-management support into an acute stroke service
Makela, P., Gawned, S and Jones, F 2014. Starting early: integration of self-management support into an acute stroke service. BMJ Open Quality. 3 (1) u202037.w1759. https://doi.org/10.1136/bmjquality.u202037.w1759

Written medical discharge communication from an acute stroke service: a project to improve content through development of a structured stroke-specific template
Makela, P., Haynes, C., Holt, K. and Kar, A. 2013. Written medical discharge communication from an acute stroke service: a project to improve content through development of a structured stroke-specific template. BMJ Open Quality. :u202037.w1095. https://doi.org/10.1136/bmjquality.u202037.w1095

Permalink - https://westminsterresearch.westminster.ac.uk/item/q576z/disrupting-self-management-broadening-understandings-through-narratives-of-traumatic-brain-injury


Share this
Tweet
Email

Usage statistics

58 total views
0 total downloads
1 views this month
0 downloads this month
These values are for the period from September 2nd 2018, when this repository was created

Export as