The Experience of Persons with Parkinson’s Disease: a Hermeneutic-Phenomenological Exploration

In: Journal of Phenomenological Psychology
Authors: John W. Machalaba 1 and Louis Sass 2
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  • 1 Rutgers The State University of New Jersey, USA
  • 2 Rutgers The State University of New Jersey, USA
Online Publication Date:
27 Apr 2020
In:
Volume 51: Issue 1
Article Type:
Research Article
Page Count:
16–43
DOI:
https://doi.org/10.1163/15691624-12341369
Keywords:
phenomenology; hermeneutic; existential; experience; qualitative interview; subjectivity; neurodegenerative disease; Parkinson’s Disease

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Abstract

This study seeks to understand the subjective experience or lived world typical of patients with Parkinson’s disease (PD). It uses qualitative methodology, grounded in a hermeneutic-phenomenological perspective, to consider lived experience in a small sample of 7 individuals (4 published accounts, 3 subjects interviewed in depth). The analysis identified four themes that appear to be characteristic of the experience of PD: A) Denial, B) Emotion and symptom expression, C) Volitional and spontaneous action, and D) Alteration of temporal perspective. Concepts from existential-phenomenological philosophy (including the notions of “bad faith,” reflective versus pre-reflective experience, being-in-itself versus being-for-itself, and temporality) were used to reflect upon these themes to achieve a synthetic account of the subjective experience of PD. The findings of the study are compared to other findings in the phenomenological literature, and suggestions for further research are posed.

In:
Journal of Phenomenological Psychology
E-ISSN:
1569-1624
Print ISSN:
0047-2662
Publisher:
Brill
Cover Journal of Phenomenological Psychology

  • Ascherio, A., Chen, H., Weisskopf, M. G., O’Reilly, E., McCullough, M. L., Calle, E. E., & Thun, M. J. (2006). Pesticide exposure and risk for Parkinson’s disease. Annals of Neurology, 60(2), 197–203.

    • Search Google Scholar
    • Export Citation

  • Bernstein, R. J. (1983). Beyond objectivism and relativism: Science, hermeneutics, and praxis. Philadelphia: University of Pennsylvania Press.

    • Search Google Scholar
    • Export Citation

  • Beumont, P. J. V. (1992). Phenomenology and the history of psychiatry. Australian and New Zealand journal of psychiatry, 26(4), 532–545.

    • Search Google Scholar
    • Export Citation

  • Borek, L. L., Kohn, R., & Friedman, J. H. (2007). Phenomenology of dreams in Parkinson’s disease. Movement Disorders, 22(2), 198–202.

    • Search Google Scholar
    • Export Citation

  • Bramley, N., & Eatough, V. (2005). The experience of living with Parkinson’s disease: An interpretative phenomenological analysis case study. Psychology & Health, 20(2), 223–235.

    • Search Google Scholar
    • Export Citation

  • Caap‐Ahlgren, M., Lannerheim. L., & Dehlin, O. (2002). Older Swedish women’s experiences of living with symptoms related to Parkinson’s disease. Journal of advanced nursing, 39(1), 87–95.

    • Search Google Scholar
    • Export Citation

  • Colombetti, G. (2011). Varieties of pre-reflective self-awareness: Foreground and background bodily feelings in emotion experience. Inquiry, 54(3), 293–313.

    • Search Google Scholar
    • Export Citation

  • Cornelius, R. R. (1996). The science of emotion: Research and tradition in the psychology of emotions. New York: Prentice-Hall, Inc.

  • de Lau, L. M., & Breteler, M. M. (2006). Epidemiology of Parkinson’s disease. The Lancet Neurology, 5(6), 525–535.

  • Deuschl, G., Papengut, F., & Hellriegel, H. (2012). The phenomenology of parkinsonian tremor. Parkinsonism & Related Disorders, 18, S87–S89.

    • Search Google Scholar
    • Export Citation

  • Echeverria, E. (2006). Gadamer’s hermeneutics and the question of relativism. In K. J. Vanhoozer, J. K. A. Smith & B. E. Benson (Eds.), Hermeneutics at the Crossroads. Bloomington IN: Indiana University Press, pp. 51–81.

    • Search Google Scholar
    • Export Citation

  • Frijda, N. H. (1986). The emotions. Cambridge: Cambridge University Press.

  • Gadamer, H.-G. (2004). Truth and method. (J. C. Weinsheimer & D. G. Marshall, Trans.). London: Continuum. (Original work published 1960).

    • Search Google Scholar
    • Export Citation

  • Giasson, B. I., & Van Deerlin, V. M. (2007). Mutations in LRRK2 as a cause of Parkinson’s disease. Neurosignals, 16(1), 99–105.

  • Gray, H. M., & Tickle-Degnen, L. (2010). A meta-analysis of performance on emotion recognition tasks in Parkinson’s disease. Neuropsychology, 24(2), 176–191.

    • Search Google Scholar
    • Export Citation

  • Guignon, C. B. (2004). On being authentic. New York: Routledge.

  • Guignon, C. (2008). Authenticity. Philosophy Compass, 3(2), 277–290.

  • Haahr, A., Kirkevold, M., Hall, E. O., & Østergaard, K. (2011). Living with advanced Parkinson’s disease: A constant struggle with unpredictability. Journal of Advanced Nursing, 67(2), 408–417.

    • Search Google Scholar
    • Export Citation

  • Havemann, J. (2003). A life shaken: my encounter with Parkinson’s Disease. Baltimore: JHU Press.

  • Heidegger, M., Stambaugh, J., & Schmidt, D. J. (2010). Being and time. Albany: SUNY Press. (Original work published 1927).

  • Hodgson, J. H., Garcia, K., & Tyndall, L. (2004). Parkinson’s disease and the couple relationship: A qualitative analysis. Families, Systems, & Health, 22(1), 101.

    • Search Google Scholar
    • Export Citation

  • Kinsley, M. E. (2016). Old age: a beginner’s guide. New York: Tim Duggan Books.

  • Lew, M. (2007). Overview of Parkinson’s disease. Pharmacotherapy: The Journal of Human Pharmacology and Drug Therapy, 27(12P2), 155S–160S.

    • Search Google Scholar
    • Export Citation

  • Lotharius, J., & Brundin, P. (2002). Pathogenesis of Parkinson’s disease: Dopamine, vesicles and α-synuclein. Nature Reviews Neuroscience, 3(12), 932–942.

    • Search Google Scholar
    • Export Citation

  • Marr, J. A. (1991). The experience of living with Parkinson’s disease. Journal of Neuroscience Nursing, 23(5), 325–329.

  • McCracken, G. (1988). The Long Interview (Vol. 13). Newbury Park, CA: Sage.

  • McDonald, W. M., Richard, I. H., & DeLong, M. R. (2003). Prevalence, etiology, and treatment of depression in Parkinson’s disease. Biological Psychiatry, 54(3), 363–375.

    • Search Google Scholar
    • Export Citation

  • Nordgaard, J., Sass, L. A., & Parnas, J. (2013). The psychiatric interview: Validity, structure, and subjectivity. European archives of psychiatry and clinical neuroscience, 263(4), 353–364.

    • Search Google Scholar
    • Export Citation

  • Ohtsuka, C., Sasaki, M., Konno, K., Koide, M., Kato, K., Takahashi, J., & Terayama, Y. (2013). Changes in substantia nigra and locus coeruleus in patients with early- stage Parkinson’s disease using neuromelanin-sensitive MR imaging. Neuroscience letters, 541, 93–98.

    • Search Google Scholar
    • Export Citation

  • Palfreman, J. (2015). Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease. Scientific American/Farrar, Straus and Giroux.

    • Search Google Scholar
    • Export Citation

  • Parkinson, J. (2002). An essay on the shaking palsy. The Journal of Neuropsychiatry and Clinical Neurosciences, 14(2), 223–236. (Original work published 1817).

    • Search Google Scholar
    • Export Citation

  • Pringsheim, T., Jette, N., Frolkis, A., & Steeves, T. D. (2014). The prevalence of Parkinson’s disease: A systematic review and meta-analysis. Movement Disorders, 29(13), 1583–1590.

    • Search Google Scholar
    • Export Citation

  • Prinz, J. J. (2004). Gut reactions: A perceptual theory of emotion. Oxford: Oxford University Press.

  • Reijnders, J. S., Ehrt, U., Weber, W. E., Aarsland, D., & Leentjens, A. F. (2008). A systematic review of prevalence studies of depression in Parkinson’s disease. Movement Disorders, 23(2), 183–189.

    • Search Google Scholar
    • Export Citation

  • Ricoeur, P. (1974). Existence and hermeneutics. In D. Ihde (Ed.), The Conflict of Interpretations: Essays in Hermeneutics. Boston: Northwestern University Press.

    • Search Google Scholar
    • Export Citation

  • Sartre, J. P. (2012). Being and nothingness. New York: Open Road Media. (Original work published 1943).

  • Timulak, L. (2009). Meta-analysis of qualitative studies: A tool for reviewing qualitative research findings in psychotherapy. Psychotherapy Research, 19(4–5), 591–600.

    • Search Google Scholar
    • Export Citation

  • Todd, D., Simpson, J., & Murray, C. (2010). An interpretative phenomenological analysis of delusions in people with Parkinson’s disease. Disability and Rehabilitation, 32(15), 1291–1299.

    • Search Google Scholar
    • Export Citation

  • Van Der Bruggen, H., & Widdershoven, G. (2005). Being a Parkinson’s patient: Immobile and unpredictably whimsical literature and existential analysis. Medicine, Health Care and Philosophy, 7(3), 289–301.

    • Search Google Scholar
    • Export Citation

  • Verpeaux, J. (2013). Parkinson’s Disease: A Sniper in my head (1st ed.). Lulu.

  • Warner, T. T., & Schapira, A. H. (2003). Genetic and environmental factors in the cause of Parkinson’s disease. Annals of Neurology, 53(S3), S16–S25.

    • Search Google Scholar
    • Export Citation

  • Weinsheimer, J. (1985). Gadamer’s Hermeneutics: A Reading of Truth and Method. New Haven, CT: Yale University Press.

  • Wen, H. B., Zhang, Z. X., Wang, H., Li, L., Chen, H., Liu, Y., & Xu, Q. (2012). Epidemiology and clinical phenomenology for Parkinson’s disease with pain and fatigue. Parkinsonism & Related Disorders, 18, S222–S225.

    • Search Google Scholar
    • Export Citation

  • Wertz, F. J., Charmaz, K., McMullen, L. M., Josselson, R., & Anderson, R. (2011). Five ways of doing qualitative analysis: Phenomenological psychology, grounded theory, discourse analysis, narrative research, and intuitive inquiry. New York: Guilford Press.

    • Search Google Scholar
    • Export Citation

  • Wressle, E., Engstrand, C., & Granérus, A. K. (2007). Living with Parkinson’s disease: Elderly patients’ and relatives’ perspective on daily living. Australian Occupational Therapy Journal, 54(2), 131–139.

    • Search Google Scholar
    • Export Citation

  • Zahavi, D. (2005). Subjectivity and selfhood: Investigating the first-person perspective. Cambridge: Bradford Books.

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