Skip to main content

“They brought you back to the fact you’re not the same”: Sense of self after traumatic brain injury

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’.

This is a preview of subscription content, access via your institution.

Notes

  1. 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Blackman, L. 2007. Psychiatric culture and bodies of resistance. Body & Society 13 (2): 1–23.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • Bradby, H. 2017. Taking story seriously. Social Theory & Health 15 (2): 206–222.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • Bury, M. 1982. Chronic illness as biographical disruption. Sociology of Health & Illness 4 (2): 167–182.

    Article  Google Scholar 

  • Callard, F., and D. Fitzgerald. 2016. Rethinking interdisciplinarity across the social sciences and neurosciences. Basingstoke: Palgrave Macmillan.

    Google Scholar 

  • Carel, H., and I.J. Kidd. 2014. Epistemic injustice in healthcare: A philosophical analysis. Medicine Health Care Philosophy 17: 529–540.

    Article  Google Scholar 

  • Charmaz, K. 2002a. The self as habit: The reconstruction of self in chronic illness. OTJR Occupation, Participation and Health 22 (1 suppl): 31S–41S.

    Article  Google Scholar 

  • Charmaz, K. 2002b. Stories and silences: Disclosures and self in chronic illness. Qualitative Inquiry 8 (3): 302–328.

    Article  Google Scholar 

  • Clandinin, J. 2014. Engaging in narrative inquiry. California: Left Coast Press.

    Google Scholar 

  • 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.

    Google Scholar 

  • Csordas, T.J. 2008. Intersubjectivity and intercorporeality. Subjectivity 22 (1): 110–121.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Fricker, M. 2007. Epistemic injustice. Power and the ethics of knowing. Oxford: Oxford University Press.

    Book  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • Health Foundation. 2014. Person-centred care made simple. London: Health Foundation.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • Jackson, M. 1998. Minima ethnographica: Intersubjectivity and the anthropological project. Chicago: University of Chicago Press.

    Google Scholar 

  • Jones, R.A. 2011. Storytelling scholars and the mythic child: Rhetorical aesthetics in two case studies. Culture & Psychology 17 (3): 339–358.

    Article  Google Scholar 

  • Kaiser, K. 2009. Protecting respondent confidentiality in qualitative research. Qualitative Health Research 19 (11): 1632–1641.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Kirschner, S.R. 2013. The many challenges of theorizing subjectivity. Culture & Psychology 19 (2): 225–236.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • Lachman, P. 2013. Redefining the clinical gaze. BMJ Quality & Safety 22 (11): 888–890.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Leplege, A., F. Gzil, M. Cammelli, et al. 2007. Person-centredness: Conceptual and historical perspectives. Disability and Rehabilitation 29 (20–21): 1555–1565.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Martin, E. 2010. Self-making and the brain. Subjectivity 3 (4): 366–381.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • May, V. 2011. Self, belonging and social change. Sociology 45 (3): 363–378.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Medved, M.I., and J. Brockmeier. 2011. Heart stories: Men and women after a cardiac incident. Journal of Health Psychology 16: 322–331.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Google Scholar 

  • Merriam, S.B. 2009. Qualitative research: A guide to design and implementation, 3rd ed. San Francisco, CA: Jossey-Bass.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • Ownsworth, T. 2014. Self-identity after brain injury. Hove: Psychology Press.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • Polkinghorne, D.E. 1988. Narrative knowing and the human sciences. Albany: Suny Press.

    Google Scholar 

  • Riley, G.A., and S. Balloo. 2016. Maternal narratives about their child’s identity following acquired brain injury. Cogent Psychology 3 (1): 1154308.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • 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.

    Book  Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  Google Scholar 

  • Weeks, J. 1990. The value of difference. In Identity, community, culture, difference, ed. J. Rutherford. London: Lawrence and Wishart.

    Google Scholar 

  • Wilde, A. 2014. Trust, uncertainty and identity in health-related decision-making: The role of key professionals. Disability & Society 29 (2): 198–212.

    Article  Google Scholar 

  • 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.

    Article  Google Scholar 

  • Woods, A. 2011. Post-narrative—An appeal. Narrative Inquiry 21 (2): 399–406.

    Article  Google Scholar 

  • Wright, K. 2011. Long term conditions: Nursing care and management. Oxford: Blackwell Publishing.

    Google Scholar 

  • 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.

    Google Scholar 

  • 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.

    Article  Google Scholar 

Download references

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.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Petra Mäkelä.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

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

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1057/s41286-017-0036-8

Keywords

  • Sense of self
  • Traumatic brain injury
  • Neurorehabilitation
  • Counter-narratives