In the quest for scientific understanding, we end up magnifying patients’ deficits until deficits are all we see. The actual person fades away.
(Kean 2014, pSR8).
Abstract
This paper considers contexts following traumatic brain injury, exploring what may be at stake when dominant expectations predict a ‘lost’ or ‘broken’ self. I explore stories co-constructed with one young man and his mother to illustrate their personal and intersubjective understandings of identity, at times conflicting, within family interactions and when encountering normative practices of neurorehabilitation clinicians. The power relations portrayed confront this man’s narrative attempts to align his present and pre-injury self, including standard assessments delineating change, administered by healthcare professionals. I consider a need for greater attention to interaction-generated disruption to sense of self, within contemporary conceptualisations of ‘person-centred care’.
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Notes
Ethical approval to conduct this research was granted by the National Research Ethics Service (NRES) Committee—London City & East (REC reference: 15/LO/0525). Pseudonyms are used and personal identifiers have been replaced to render participants non-recognisable, without alteration of original meanings within the accounts (Kaiser 2009).
References
Atkin, K., S. Stapley, and A. Easton. 2010. No one listens to me, nobody believes me: Self-management and the experience of living with encephalitis. Social Science and Medicine 71 (2): 386–393.
Biddle, K.R., A. McCabe, and L.S. Bliss. 1996. Narrative skills following traumatic brain injury in children and adults. Journal of Communication Disorders 29 (6): 447–469.
Blackman, L. 2007. Psychiatric culture and bodies of resistance. Body & Society 13 (2): 1–23.
Boger, E., J. Ellis, S. Latter, C. Foster, A. Kennedy, F. Jones, V. Fenerty, I. Kellar, and S. Demain. 2015. Self-management and self-management support outcomes: A systematic review and mixed research synthesis of stakeholder views. PLoS ONE 10 (7): e0130990.
Bonham, J., and C. Bacchi. 2017. Cycling ‘subjects’ in ongoing-formation: The politics of interviews and interview analysis. Journal of Sociology. doi:10.1177/1440783317715805.
Bradby, H. 2017. Taking story seriously. Social Theory & Health 15 (2): 206–222.
Britten, N., L. Moore, D. Lydahl, O. Naldemirci, M. Elam, and A. Wolf. 2017. Elaboration of the Gothenburg model of person-centred care. Health Expectations. doi:10.1111/hex.12468.
Burton, C.D., V.A. Entwistle, A.M. Elliott, N. Krucien, T. Porteous, and M. Ryan. 2017. The value of different aspects of person-centred care: a series of discrete choice experiments in people with long-term conditions. British Medical Journal Open 7 (4): e015689.
Bury, M. 1982. Chronic illness as biographical disruption. Sociology of Health & Illness 4 (2): 167–182.
Callard, F., and D. Fitzgerald. 2016. Rethinking interdisciplinarity across the social sciences and neurosciences. Basingstoke: Palgrave Macmillan.
Carel, H., and I.J. Kidd. 2014. Epistemic injustice in healthcare: A philosophical analysis. Medicine Health Care Philosophy 17: 529–540.
Charmaz, K. 2002a. The self as habit: The reconstruction of self in chronic illness. OTJR Occupation, Participation and Health 22 (1 suppl): 31S–41S.
Charmaz, K. 2002b. Stories and silences: Disclosures and self in chronic illness. Qualitative Inquiry 8 (3): 302–328.
Clandinin, J. 2014. Engaging in narrative inquiry. California: Left Coast Press.
Craik, F.I., T.M. Moroz, M. Moscovitch, D.T. Stuss, G. Winocur, E. Tulving, and S. Kapur. 2017. In search of the self. Memory, attention, and aging: Selected works of Fergus IM Craik. New York and London: Routledge.
Csordas, T.J. 2008. Intersubjectivity and intercorporeality. Subjectivity 22 (1): 110–121.
Cummins, C. (2016) Neurorehabilitation: A disciplined disciplining discipline June, http://aut.researchgateway.ac.nz/handle/10292/10218. Accessed 14 Jul 2017.
Fisher, P., and D. Goodley. 2007. The linear medical model of disability: Mothers of disabled babies resist with counter-narratives. Sociology of Health & Illness 29: 66–81.
Fleming, J.M., J. Strong, and R. Ashton. 1996. Self-awareness of deficits in adults with traumatic brain injury: How best to measure? Brain Injury 10 (1): 1–16.
Fricker, M. 2007. Epistemic injustice. Power and the ethics of knowing. Oxford: Oxford University Press.
Gardner, J. 2016. Patient-centred medicine and the broad clinical gaze: Measuring outcomes in paediatric deep brain stimulation. BioSocieties. doi:10.1057/biosoc.2016.6.
Gardner, J.G., and A. Cribb. 2016. The dispositions of things: The non-human dimension of power and ethics in patient-centred medicine. Sociology of Health & Illness. doi:10.1111/1467-9566.12431.
Gelech, J.M., and M. Desjardins. 2010. I am many: The reconstruction of self, following acquired brain injury. Qualitative Health Research 21 (1): 62–74.
Greenhalgh, T., R. Snow, S. Ryan, S. Rees, and H. Salisbury. 2015. Six ‘biases’ against patients nd carers in evidence-based medicine. BMC Medicine 13 (1): 200.
Harding, E., S. Wait, and J. Scrutton. 2015. The state of play in person-centred care: A pragmatic review of how person-centred care is defined, applied and measured. London: Health Foundation.
Health Foundation. 2014. Person-centred care made simple. London: Health Foundation.
Hunt, K.J., and C.R. May. 2017. Managing expectations: Cognitive authority and experienced control in complex healthcare processes. BMC Health Services Research. doi:10.1186/s12913-017-2366-1.
Hyett, N., A. Kenny, and V. Dickson-Swift. 2014. Methodology or method? A critical review of qualitative case study reports. International Journal of Qualitative Studies on Health and Well-Being 9: 23606.
Jackson, M. 1998. Minima ethnographica: Intersubjectivity and the anthropological project. Chicago: University of Chicago Press.
Jones, R.A. 2011. Storytelling scholars and the mythic child: Rhetorical aesthetics in two case studies. Culture & Psychology 17 (3): 339–358.
Kaiser, K. 2009. Protecting respondent confidentiality in qualitative research. Qualitative Health Research 19 (11): 1632–1641.
Kean, S. 2014. Beyond the damaged brain. The New York Times Sunday Review, SR8.
Kemp, R. 2007. Medical dominance and institutional change in the delivery of healthcare services. Forum for Social Economics 36: 43–51.
Kuehner, A. 2016. Social research as a painful (but rewarding) self-examination re-reading Georges Devereux’s psychoanalytical notion of radical subjectivity. Qualitative Inquiry 22 (9): 725–734.
Kirschner, S.R. 2013. The many challenges of theorizing subjectivity. Culture & Psychology 19 (2): 225–236.
Kovareky, D., A. Shaw, and M. Adingono-Smith. 2007. The construction of identity during group therapy among adults with traumatic brain injury. Communication and Medicine 4 (1): 53–66.
Lachman, P. 2013. Redefining the clinical gaze. BMJ Quality & Safety 22 (11): 888–890.
Lennon, A., J. Bramham, À. Carroll, J. McElligott, S. Carton, B. Waldron, D. Fortune, T. Burke, M. Fitzhenry, and C. Benson. 2014. A qualitative exploration of how individuals reconstruct their sense of self following acquired brain injury in comparison with spinal cord injury. Brain Injury 28 (1): 27–37.
Leplege, A., F. Gzil, M. Cammelli, et al. 2007. Person-centredness: Conceptual and historical perspectives. Disability and Rehabilitation 29 (20–21): 1555–1565.
Maas, A.I., C.L. Harrison-Felix, D. Menon, et al. 2011. Standardizing data collection in traumatic brain injury. Journal of Neurotrauma 28 (2): 177–187.
Mäkelä, P. (2016). Narratives of traumatic brain injury and self-management following hospital discharge. Paper presented at the British Sociological Association Medical Sociology Group Annual Conference, 7 Sept, Birmingham, UK.
Marková, I. 2003. Constitution of the self: Intersubjectivity and dialogicality. Culture & Psychology 9 (3): 249–259.
Martin, E. 2010. Self-making and the brain. Subjectivity 3 (4): 366–381.
Mattingly, C. 2010. The concept of therapeutic emplotment. In A reader in medical anthropology, ed. B. Good, M.J. Michael Fischer, S. Sarah Willen, and M.J. Del Vecchio Good, 121–136. Chichester: Wiley.
May, C., T. Rapley, T. Moreira, T. Finch, and B. Heaven. 2006. Technogovernance: Evidence, subjectivity, and the clinical encounter in primary care medicine. Social Science and Medicine 62 (4): 1022–1030.
May, V. 2011. Self, belonging and social change. Sociology 45 (3): 363–378.
Medved, M.I. 2007. Remembering without a past: Individuals with anterograde memory impairment talk about their lives. Psychology, Health and Medicine 12 (5): 603–616.
Medved, M.I., and J. Brockmeier. 2008. Continuity amid chaos: Neurotrauma, loss of memory, and sense of self. Qualitative Health Research 18 (4): 469–479.
Medved, M.I., and J. Brockmeier. 2011. Heart stories: Men and women after a cardiac incident. Journal of Health Psychology 16: 322–331.
Menon, D.K., K. Schwab, D.W. Wright, and A.I. Maas. 2010. Position statement: Definition of traumatic brain injury. Archives of Physical Medicine and Rehabilitation 91: 1637–1640.
Menzies Lyth, I. 1988. The functioning of social systems as a defence against anxiety. In Containing anxiety in institutions, vol. 1, ed. I. Menzies Lyth. London: Free Association Books.
Merriam, S.B. 2009. Qualitative research: A guide to design and implementation, 3rd ed. San Francisco, CA: Jossey-Bass.
Nochi, M. 1998. ‘‘Loss of self’’ in the narratives of people with traumatic brain injuries: A qualitative analysis. Social Science and Medicine 46: 869–878.
Ownsworth, T. 2014. Self-identity after brain injury. Hove: Psychology Press.
Pickersgill, M., S. Cunningham-Burley, and P. Martin. 2011. Constituting neurologic subjects: Neuroscience, subjectivity and the mundane significance of the brain. Subjectivity 4 (3): 346–365.
Polkinghorne, D.E. 1988. Narrative knowing and the human sciences. Albany: Suny Press.
Riley, G.A., and S. Balloo. 2016. Maternal narratives about their child’s identity following acquired brain injury. Cogent Psychology 3 (1): 1154308.
Roger, K., M. Wetzel, S. Hutchinson, T. Packer, and J. Versnel. 2014. “How can I still be me?”: Strategies to maintain a sense of self in the context of a neurological condition. International Journal of Qualitative Studies on Health and Well-Being 9 (1): 23534.
Rose, N.S., and J.M. Abi-Rached. 2013. Neuro: The new brain sciences and the management of the mind. New Jersey: Princeton University Press.
Selland, M.K. 2017. The edge of messy: Interplays of daily storytelling and grand narratives in teacher learning. Teachers and Teaching 23 (3): 244–261.
Sivertsen, M., and B. Normann. 2015. Embodiment and self in reorientation to everyday life following severe traumatic brain injury. Physiotherapy Theory and Practice 31 (3): 153–159.
Weeks, J. 1990. The value of difference. In Identity, community, culture, difference, ed. J. Rutherford. London: Lawrence and Wishart.
Wilde, A. 2014. Trust, uncertainty and identity in health-related decision-making: The role of key professionals. Disability & Society 29 (2): 198–212.
Wongvatunyu, S., and E.J. Porter. 2008. Helping young adult children with traumatic brain injury: The life-world of mothers. Qualitative Health Research 18 (8): 1062–1074.
Woods, A. 2011. Post-narrative—An appeal. Narrative Inquiry 21 (2): 399–406.
Wright, K. 2011. Long term conditions: Nursing care and management. Oxford: Blackwell Publishing.
Wright, M.M., M. Medved, R.L. Woodgate, K. Roger, and D. Sullivan. 2016. Narratives of acquired brain injury patients: Their experience of healthcare relationships and medical decision-making. Journal of Communication in Healthcare. doi:10.1080/17538068.2016.1186337.
Ylvisaker, M., K. Mcpherson, N. Kayes, and E. Pellett. 2008. Metaphoric identity mapping: Facilitating goal setting and engagement in rehabilitation after traumatic brain injury. Neuropsychological Rehabilitation 18 (5–6): 713–741.
Acknowledgements
I wish to thank the participants for sharing their stories and Damien Ridge for his guidance in this research, including comments on an earlier draft. I would also like to thank the anonymous reviewers and editor for reading the paper critically and offering constructive comments for its development. I am grateful to have had the opportunity to present an early version of this paper at the ‘Broken Narratives and the Lived Body' conference at the Monash University Prato Centre, Italy, 18-20 April 2016.
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Mäkelä, P. “They brought you back to the fact you’re not the same”: Sense of self after traumatic brain injury. Subjectivity 10, 358–373 (2017). https://doi.org/10.1057/s41286-017-0036-8
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DOI: https://doi.org/10.1057/s41286-017-0036-8