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Living an unfamiliar body: the significance of the long-term influence of bodily changes on the perception of self after stroke

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Abstract

The aim of this study is to illuminate the significance of the long-term influence of bodily changes on the perception of self after stroke by means of narrative interviews with 23 stroke survivors. A phenomenological-hermeneutic approach inspired by the philosophy of Merleau-Ponty and Ricoeur is the methodological framework. Zahavi’s understanding of the embodied self and Leder’s concept of dys-appearance along with earlier research on identity guide the comprehensive understanding of the theme. The meaning of bodily changes after stroke can be understood as living with an altered perception of self. Stroke survivors perceive their bodies as fragile, unfamiliar and unreliable and tend to objectify them. The weak and discomforting body that ‘cannot’ demands constant, comprehensive awareness to keep itself in play. These long-term and often permanent consequences of bodily weakness may turn stroke survivors’ intentionality inwards, away from external activities and projects and relationships with others. Negative judgements from others are added to lost roles and positions and threaten the vulnerable self. Stroke survivors try to regain familiarity with their body by their life-long project of testing its boundaries. Mastering important tasks helps them strengthen their self-concept. Health care workers should be aware of the embodied self and engage in long-term dialogues with stroke survivors to strengthen positive perceptions of body and self. More research is needed to understand destructive post-stroke phenomena such as fatigue and pain and to find effective methods to help stroke survivors regain wholeness of body and self.

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References

  • Appelros, P. 2006. Prevalence and predictors of pain and fatigue after stroke: A population-based study. International Journal of Rehabilitation Research 29(4): 329–333.

    Article  PubMed  Google Scholar 

  • Bogousslavsky, J.M. 2003. William Feinberg Lecture 2002: Emotions, mood, and behavior after stroke. Stroke 34(4): 1046–1050.

    Article  PubMed  CAS  Google Scholar 

  • Bullington, J. 2009. Embodiment and chronic pain: Implications for rehabilitation practice. Health Care Analysis 17: 100–109.

    Article  PubMed  Google Scholar 

  • Charmaz, K. 1995. The body, identity and self: Adapting to Impairment. The Sociological Quarterly 36(4): 657–680.

    Article  Google Scholar 

  • Clarke, P.J., et al. 1999. Handicap in stroke survivors. Disability and Rehabilitation 21(3): 116–123.

    Article  PubMed  CAS  Google Scholar 

  • Corbin, J.M., and A.L. Strauss. 1987. Accompaniments of chronic illness: Changes in body, self, biography, and biographical time. Research in the Sociology of Health Care 6: 249–281.

    Google Scholar 

  • Donnan, G.A., et al. 2008. Stroke. The Lancet 371(9624): 1612–1623.

    Article  CAS  Google Scholar 

  • Doolittle, N.D. 1991. Clinical ethnography of lacunar stroke: Implications for acute care. Journal of Neuroscience Nursing 23(4): 235–240.

    Article  PubMed  CAS  Google Scholar 

  • Doolittle, N.D. 1992. The experience of recovery following lacunar stroke. Rehabilitation Nursing 17(3): 122–126.

    Article  PubMed  CAS  Google Scholar 

  • Doolittle, N.D. 1994. A clinical ethnography of stroke recovery. In Interpretive phenomenology, ed. P. Benner. London: Sage publications.

    Google Scholar 

  • Ellis-Hill, C.S., and S. Horn. 2000. Change in identity and self-concept: A new theoretical approach to recovery following a stroke. Clinical Rehabilitation 14(3): 279–287.

    Article  PubMed  CAS  Google Scholar 

  • Ellis-Hill, C.S., et al. 2000. Self-body split: Issues of identity in physical recovery following a stroke. Disability and Rehabilitation 22(16): 725–733.

    Article  PubMed  CAS  Google Scholar 

  • Ervik, B., et al. 2010. Hit by waves—living with local advanced or localized prostate cancer treated with endocrine therapy or under active surveillance. Cancer Nursing 33(5): 382–389.

    Article  PubMed  Google Scholar 

  • Fagerberg, I., and A. Norberg. 2009. “Learning by doing”—or how to reach an understanding of the research method phenomenological hermeneutics. Nurse Education Today 29(7): 735–739.

    Article  PubMed  Google Scholar 

  • Faircloth, C., et al. 2004. Disrupted bodies: Experiencing the newly limited body in stroke. Symbolic Interaction 27: 71–87.

    Article  Google Scholar 

  • Fischer R. Santamäki, et al. 2008. Embracing opposites: Meanings of growing old as narrated by people aged 85. International Journal of Aging and Human Development 67(3): 259–271.

  • Gadow, S. 1982. Body and self—a dialectic. In The humanity of the Ill, phenomenological perspectives, ed. V. Kestenbaum, 86–100. Knoxville: The University of Tennessee Press.

    Google Scholar 

  • Gelech, J.M., and M. Desjardins. 2011. I am many: The reconstruction of self following acquired brain injury. Qualitative Health Research 21(1): 62–74.

    Article  PubMed  Google Scholar 

  • Häggström, T., et al. 1994. The experience of living with stroke sequelae illuminated by means of stories and metaphors. Qualitative Health Research 4(3): 321–337.

    Article  Google Scholar 

  • Hilton, E.L. 2002. The meaning of stroke in elderly women: A phenomenological investigation. Journal of Gerontological Nursing 28(7): 19–26.

    PubMed  Google Scholar 

  • Kaufmann, S.R. 1988. Illness, biography, and the interpretation of self following a stroke. Journal of Aging Studies 2(3): 217–227.

    Article  Google Scholar 

  • Korpelainen, I., et al. 1999. Sexual functioning among stroke patients and their spouses. Stroke 30: 715–719.

    Google Scholar 

  • Kvigne, K., and M. Kirkevold. 2003. Living with bodily strangeness: Women’s experiences of their changing and unpredictable body following a stroke. Qualitative Health Research 13(9): 1291–1310.

    Article  PubMed  Google Scholar 

  • Kvigne, K., et al. 2004. Fighting back—struggling to continue life and preserve the self following a stroke. Health Care for Women International 25(4): 370–387.

    Article  PubMed  Google Scholar 

  • Leder, D. 1990. The absent body. Chicago: University of Chicago Press.

    Google Scholar 

  • Lindseth, A., and A. Norberg. 2004. A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences 18(2): 145–153.

    Article  PubMed  Google Scholar 

  • Merleau-Ponty, M. 2002. Phenomenology of perception. London: Routledge.

    Google Scholar 

  • Murphy, R.F. 1990. The body silent. New York: W.W.Norton Company.

    Google Scholar 

  • Murray, C.D., and B. Harrison. 2004. The meaning and experience of being a stroke survivor: An interpretative phenomenological analysis. Disability and Rehabilitation 26(13): 808–816.

    Article  PubMed  CAS  Google Scholar 

  • Parr, S. 2007. Living with severe aphasia: Tracking social exclusion. Aphasiology 21(1): 98–123.

    Article  Google Scholar 

  • Patel, M.D., et al. 2002. Cognitive impairment after stroke: Clinical determinants and its associations with long-term stroke outcomes. Journal of the American Geriatrics Society 50(4): 700–706.

    Article  PubMed  Google Scholar 

  • Philpin, S.M., et al. 2005. Giving people a voice: Reflections on conducting interviews with participants experiencing communication impairment. Journal of Advanced Nursing 50(3): 299–306.

    Article  PubMed  Google Scholar 

  • Ricoeur, P. 1976. Interpretation theory: Discourse and the surplus of meaning. Fort Worth, TX: Texas Christian University Press.

    Google Scholar 

  • Salter, K., et al. 2008. The experience of living with stroke: A qualitative meta-synthesis. Journal of Rehabilitation Medicine (Stiftelsen Rehabiliteringsinformation) 40(8): 595–602.

    Article  Google Scholar 

  • Stone, S.D. 2005. Reactions to invisible disability: The experience of young women survivors of hemorrhagic stroke. Disability and Rehabilitation 27(6): 293–304.

    Google Scholar 

  • Thomas, S.P. 2005. Through the lens of Merleau-Ponty: Advancing the phenomenological approach to nursing research. Nursing Philosophy 6(1): 63–76.

    Article  PubMed  Google Scholar 

  • Toombs, K. 1992. The body in multiple sclerosis: A patient perspective. In The body in medical thought and practice, ed. D. Leder. Dordrecht: Kluwer Academic Publishers.

    Google Scholar 

  • van Manen, M. 1998. Modalities of body experience in illness and health… presented as a keynote at the Qualitative Health Research Conference, Pennsylvania State University, Hershey, PA, June 9–13, 1994. Qualitative Health Research 8(1):7–24.

  • Vanhook, P. 2009. The domains of stroke recovery: A synopsis of the literature. Journal of Neuroscience Nursing 41(1): 6–17.

    Article  PubMed  Google Scholar 

  • Vickery, C.D., et al. 2008. Self-esteem in an acute stroke rehabilitation sample: A control group comparison. Clinical Rehabilitation 22(2): 179–187.

    Article  PubMed  Google Scholar 

  • Widar, M., et al. 2007. Caring and uncaring experiences as narrated by persons with long-term pain after a stroke. Scandinavian Journal of Caring Sciences 21(1): 41–47.

    Article  PubMed  Google Scholar 

  • Wyller, T.B., and M. Kirkevold. 1999. How does a cerebral stroke affect quality of life? Towards an adequate theoretical account. Disability and Rehabilitation 21(4): 152–161.

    Article  PubMed  CAS  Google Scholar 

  • Young, J., et al. 2003. Review of longer-term problems after disabling stroke. Reviews in Clinical Gerontology 13(1): 55–65.

    Article  Google Scholar 

  • Zahavi, D. 2005. Subjectivity and selfhood: Investigating the first-person perspective. Cambridge, MA: MIT Press.

    Google Scholar 

  • Zeiler, K. 2010. A phenomenological analysis of bodily self-awareness in the experience of pain and pleasure: On dys-appearance and eu-appearance. Medicine, Health Care and Philosophy 13(4): 333–342.

    Article  Google Scholar 

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Authors and Affiliations

  1. Faculty of Health and Society, Narvik University College, Lodve Langesgt. 2, Pb. 385, 8505, Narvik, Norway

    Gabriele Kitzmüller

  2. Faculty of Health Sciences, University of Tromsø, Tromsø, Norway

    Gabriele Kitzmüller & Kenneth Asplund

  3. Faculty of Health and Society, Narvik University College, Narvik, Norway

    Terttu Häggström

  4. Department of Health Science, University of Mid Sweden, Sundsvall, Sweden

    Kenneth Asplund

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  1. Gabriele Kitzmüller
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  2. Terttu Häggström
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  3. Kenneth Asplund
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Correspondence to Gabriele Kitzmüller.

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Kitzmüller, G., Häggström, T. & Asplund, K. Living an unfamiliar body: the significance of the long-term influence of bodily changes on the perception of self after stroke. Med Health Care and Philos 16, 19–29 (2013). https://doi.org/10.1007/s11019-012-9403-y

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