‘Le regard des autres’: the experience of walking in social environments as a person with Parkinson’s disease

References

• Adams, R. B., Franklin, R. G., Kveraga, K., Ambady, N., Kleck, R. E., Whalen, P. J., Hadjikhani, N., & Nelson, A. J. (2012). Amygdala responses to averted vs direct gaze fear vary as a function of presentation speed. Social Cognitive and Affective Neuroscience, 7(5), 568–577. https://doi.org/10.1093/scan/nsr038
   PubMed Web of Science ®Google Scholar
• Allport, G. W. (1979). The nature of prejudice (Unabridged éd.). Basic Books.
   Google Scholar
• Avanzino, L., Lagravinese, G., Abbruzzese, G., & Pelosin, E. (2018). Relationships between gait and emotion in Parkinson’s disease: A narrative review. Gait & Posture, 65, 57–64. https://doi.org/10.1016/j.gaitpost.2018.06.171
   PubMed Web of Science ®Google Scholar
• Babik, I., & Gardner, E. S. (2021). Factors affecting the perception of disability: A developmental perspective. Frontiers in Psychology, 12, 1–26. https://doi.org/10.3389/fpsyg.2021.702166
   Web of Science ®Google Scholar
• Báez-Mendoza, R., & Schultz, W. (2013). The role of the striatum in social behavior. Frontiers in Neuroscience, 7, 233. https://doi.org/10.3389/fnins.2013.00233
   PubMed Web of Science ®Google Scholar
• Baum, C. M. (2011). Fulfilling the promise: Supporting participation in daily life. Arch Phys Med Rehabil, 92(2), 169–175. https://doi.org/10.1016/j.apmr.2010.12.010
   PubMed Web of Science ®Google Scholar
• Bettecken, K., Bernhard, F., Sartor, J., Hobert, M. A., Hofmann, M., Gladow, T., Uem, J. M. T. v., Liepelt-Scarfone, I., & Maetzler, W. (2017). No relevant association of kinematic gait parameters with health-related quality of life in Parkinson’s disease. PLOS One, 12(5), e0176816. https://doi.org/10.1371/journal.pone.0176816
   PubMed Web of Science ®Google Scholar
• Birdwhistell, R. L. (1970). Kinesics and context: Essays on body motion communication. University of Pennsylvania Press.
   Google Scholar
• Blake, R., & Shiffrar, M. (2007). Perception of human motion. Annual Review of Psychology, 58(1), 47–73. https://doi.org/10.1146/annurev.psych.57.102904.190152
   PubMed Web of Science ®Google Scholar
• 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. https://doi.org/10.1080/08870440412331296053
   Web of Science ®Google Scholar
• Bremmer, J. (1992). A cultural history of gesture (H. Roodenburg, Ed.; 1st ed.). Cornell Univ Pr.
   Google Scholar
• Burn, D. J., Landau, S., Hindle, J. V., Samuel, M., Wilson, K. C., Hurt, C. S., & Brown, R. G., & for the PROMS-PD Study Group. (2012). Parkinson’s disease motor subtypes and mood. Movement Disorders: Official Journal of the Movement Disorder Society, 27(3), 379–386. https://doi.org/10.1002/mds.24041
   PubMed Web of Science ®Google Scholar
• Cahour, B., Salembier, P., & Zouinar, M. (2016). Analyzing lived experience of activity. Le Travail Humain, 79(3), 259–284. https://doi.org/10.3917/th.793.0259
   Web of Science ®Google Scholar
• Cassidy, E., Reynolds, F., Naylor, S., & De Souza, L. (2011). Using interpretative phenomenological analysis to inform physiotherapy practice: An introduction with reference to the lived experience of cerebellar ataxia. Physiotherapy Theory and Practice, 27(4), 263–277. https://doi.org/10.3109/09593985.2010.488278
   PubMedGoogle Scholar
• Chang, F.-H., & Coster, W. J. (2014). Conceptualizing the construct of participation in adults with disabilities. Archives of Physical Medicine and Rehabilitation, 95(9), 1791–1798. https://doi.org/10.1016/j.apmr.2014.05.008
   PubMed Web of Science ®Google Scholar
• Chriss, J. (2015). Goffman, parsons, and the negational self. Academicus International Scientific Journal, 11, 11–31. https://doi.org/10.7336/academicus.2015.11.01
   Google Scholar
• Cowie, D., Limousin, P., Peters, A., Hariz, M., & Day, B. L. (2012). Doorway-provoked freezing of gait in Parkinson’s disease. Movement Disorders: Official Journal of the Movement Disorder Society, 27(4), 492–499. https://doi.org/10.1002/mds.23990
   PubMed Web of Science ®Google Scholar
• Dissanayaka, N. N. W., Sellbach, A., Matheson, S., O’Sullivan, J. D., Silburn, P. A., Byrne, G. J., Marsh, R., & Mellick, G. D. (2010). Anxiety disorders in Parkinson’s disease: prevalence and risk factors. Movement Disorders: Official Journal of the Movement Disorder Society, 25(7), 838–845. https://doi.org/10.1002/mds.22833
   PubMed Web of Science ®Google Scholar
• Dos Santos Delabary, M., Komeroski, I. G., Monteiro, E. P., Costa, R. R., & Haas, A. N. (2018). Effects of dance practice on functional mobility, motor symptoms and quality of life in people with Parkinson’s disease: a systematic review with meta-analysis. Aging Clinical and Experimental Research, 30(7), 727–735. https://doi.org/10.1007/s40520-017-0836-2
   PubMed Web of Science ®Google Scholar
• Duncan, R. P., & Earhart, G. M. (2011). Measuring participation in individuals with Parkinson disease: Relationships with disease severity, quality of life, and mobility. Disability and Rehabilitation, 33(15-16), 1440–1446. https://doi.org/10.3109/09638288.2010.533245
   PubMed Web of Science ®Google Scholar
• Ewbank, M. P., Fox, E., & Calder, A. J. (2010). The interaction between gaze and facial expression in the amygdala and extended amygdala is modulated by anxiety. Frontiers in Human Neuroscience, 4, 56. https://doi.org/10.3389/fnhum.2010.00056
   PubMed Web of Science ®Google Scholar
• Fontana, A., & Frey, J. (1994). The art of science. In The handbook of qualitative research (pp. 361–376). Sage Publications.
   Google Scholar
• Gleeson, K., & Frith, H. (2006). (De)constructing body image. Journal of Health Psychology, 11(1), 79–90. https://doi.org/10.1177/1359105306058851
   PubMed Web of Science ®Google Scholar
• Goffman, E. (1971). Relations in public (1st ed.). Basic Books.
   Google Scholar
• Goodwin, V. A., Richards, S. H., Taylor, R. S., Taylor, A. H., & Campbell, J. L. (2008). The effectiveness of exercise interventions for people with Parkinson’s disease: A systematic review and meta-analysis. Movement Disorders: Official Journal of the Movement Disorder Society, 23(5), 631–640. https://doi.org/10.1002/mds.21922
   PubMed Web of Science ®Google Scholar
• Grabli, D., Karachi, C., Welter, M.-L., Lau, B., Hirsch, E. C., Vidailhet, M., & François, C. (2012). Normal and pathological gait: What we learn from Parkinson’s disease. Journal of Neurology, Neurosurgery, and Psychiatry, 83(10), 979–985. https://doi.org/10.1136/jnnp-2012-302263
   PubMed Web of Science ®Google Scholar
• Hammel, J., Magasi, S., Heinemann, A., Gray, D. B., Stark, S., Kisala, P., Carlozzi, N. E., Tulsky, D., Garcia, S. F., & Hahn, E. A. (2015). Environmental barriers and supports to everyday participation: A qualitative insider perspective from people with disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 578–588. https://doi.org/10.1016/j.apmr.2014.12.008
   PubMed Web of Science ®Google Scholar
• Hermanns, M. (2013). The invisible and visible stigmatization of Parkinson’s disease: The invisible and visible stigmatization of Parkinson’s disease. Journal of the American Association of Nurse Practitioners. 25(10), 563-566. https://doi.org/10.1111/1745-7599.12008
   PubMed Web of Science ®Google Scholar
• Hietanen, J. K. (2018). Affective eye contact: An integrative review. Frontiers in Psychology, 9, 1587. https://doi.org/10.3389/fpsyg.2018.01587
   PubMed Web of Science ®Google Scholar
• Hietanen, J. K., Leppänen, J. M., Peltola, M. J., Linna-Aho, K., & Ruuhiala, H. J. (2008). Seeing direct and averted gaze activates the approach-avoidance motivational brain systems. Neuropsychologia, 46(9), 2423–2430. https://doi.org/10.1016/j.neuropsychologia.2008.02.029
   PubMed Web of Science ®Google Scholar
• Hocking, C. (2021). Occupation in context: A reflection on environmental influences on human doing. Journal of Occupational Science, 28(2), 214–221. https://doi.org/10.1080/14427591.2019.1708434
   Web of Science ®Google Scholar
• Houston, S. (2015). Feeling lovely: An examination of the value of beauty for people dancing with Parkinson’s. Dance Research Journal, 47(1), 27–43. https://doi.org/10.1017/S0149767715000042
   Web of Science ®Google Scholar
• Houston, S. (2019). Dancing with Parkinson’s. Intellect.
   Google Scholar
• Houston, S. (2020). Caring beyond illness: An examination of Godder’s socially engaged art and participatory dance for Parkinson’s work. In Performing care. New perspectives on socially engaged performance (pp. 69–84). Manchester University Press.
   Google Scholar
• Ingold, T. (2011). Being alive: Essays on movement, knowledge and description. Routledge.
   Google Scholar
• Jankovic, J. (2008). Parkinson’s disease: Clinical features and diagnosis. Journal of Neurology, Neurosurgery, and Psychiatry, 79(4), 368–376. https://doi.org/10.1136/jnnp.2007.131045
   PubMed Web of Science ®Google Scholar
• Jóhannsdóttir, Á., Egilson, S. T., & Gibson, B. E. (2021). What’s shame got to do with it? The importance of affect in critical disability studies. Disability & Society, 36(3), 342–357. https://doi.org/10.1080/09687599.2020.1751076
   Web of Science ®Google Scholar
• Johnsen, E. L., Mogensen, P. H., Sunde, N. A., & Østergaard, K. (2009). Improved asymmetry of gait in Parkinson’s disease with DBS: Gait and postural instability in Parkinson’s disease treated with bilateral deep brain stimulation in the subthalamic nucleus. Movement Disorders, 24(4), 588–595. https://doi.org/10.1002/mds.22419
   Web of Science ®Google Scholar
• Jones, D., Rochester, L., Birleson, A., Hetherington, V., Nieuwboer, A., Willems, A.-M., Van Wegen, E., & Kwakkel, G. (2008). Everyday walking with Parkinson’s disease: Understanding personal challenges and strategies. Disability and Rehabilitation, 30(16), 1213–1221. https://doi.org/10.1080/09638280701828955
   PubMed Web of Science ®Google Scholar
• Kaufer, S., & Chemero, A. (2015). Phenomenology: An introduction. John Wiley & Sons.
   Google Scholar
• Knutsson, E. (1972). An analysis of Parkinsonian gait. Brain: A Journal of Neurology, 95(3), 475–486. https://doi.org/10.1093/brain/95.3.475
   PubMedGoogle Scholar
• Kotter-Grühn, D. (2015). Changing negative views of aging: Implications for intervention and translational research. Annual Review of Gerontology and Geriatrics, 35(1), 167–186. https://doi.org/10.1891/0198-8794.35.167
   Google Scholar
• Lagravinese, G., Pelosin, E., Bonassi, G., Carbone, F., Abbruzzese, G., & Avanzino, L. (2018). Gait initiation is influenced by emotion processing in Parkinson’s disease patients with freezing. Movement Disorders: Official Journal of the Movement Disorder Society, 33(4), 609–617. https://doi.org/10.1002/mds.27312
   PubMed Web of Science ®Google Scholar
• Lamont, R. M., Morris, M. E., Woollacott, M. H., & Brauer, S. G. (2012). Community walking in people with Parkinson’s disease. Parkinson’s Disease, 2012, 856237–856238. https://doi.org/10.1155/2012/856237
   PubMed Web of Science ®Google Scholar
• Larkin, M., Eatough, V., & Osborn, M. (2011). Interpretative phenomenological analysis and embodied, active, situated cognition. Theory & Psychology, 21(3), 318–337. https://doi.org/10.1177/0959354310377544
   Web of Science ®Google Scholar
• Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The person-environment-occupation model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63(1), 9–23. https://doi.org/10.1177/000841749606300103
   Google Scholar
• Leplat, J. (2000). L’ananalyse psychologique de l’activité en ergonomie. Octarès Editions.
   Google Scholar
• Macht, M., & Ellgring, H. (1999). Behavioral analysis of the freezing phenomenon in Parkinson’s disease: A case study. Journal of Behavior Therapy and Experimental Psychiatry, 30(3), 241–247.
   PubMed Web of Science ®Google Scholar
• Mauss, M. (1936). Les Techniques du Corps. Journal de Psychologie, 32(3–4), 365–386.
   Google Scholar
• McNeely, M. E., Duncan, R. P., & Earhart, G. M. (2015). Impacts of dance on non-motor symptoms, participation, and quality of life in Parkinson disease and healthy older adults. Maturitas, 82(4), 336–341. https://doi.org/10.1016/j.maturitas.2015.08.002
   PubMed Web of Science ®Google Scholar
• Naugle, K. M., Hass, C. J., Bowers, D., & Janelle, C. M. (2012). Emotional state affects gait initiation in individuals with Parkinson’s disease. Cognitive, Affective & Behavioral Neuroscience, 12(1), 207–219. https://doi.org/10.3758/s13415-011-0071-9
   PubMed Web of Science ®Google Scholar
• Nutt, J. G., Bloem, B. R., Giladi, N., Hallett, M., Horak, F. B., & Nieuwboer, A. (2011). Freezing of gait: Moving forward on a mysterious clinical phenomenon. The Lancet. Neurology, 10(8), 734–744.
   PubMed Web of Science ®Google Scholar
• Papathanasiou, I., MacDonald, L., Whurr, R., & Jahanshahi, M. (2001). Perceived stigma in Spasmodic Torticollis. Movement Disorders: Official Journal of the Movement Disorder Society, 16(2), 280–285. https://doi.org/10.1002/mds.1055
   PubMed Web of Science ®Google Scholar
• Parry, R., Buttelli, O., Riff, J., Roussel, J., Sellam, N., Welter, M. L., & Lalo, E. (2017). Rethinking gait and motor activity in daily life: A neuroergonomic perspective of Parkinson’s disease. Le Travail Humain, 80(1), 23–50. https://doi.org/10.3917/th.801.0023
   Web of Science ®Google Scholar
• Parry, R., Buttelli, O., Riff, J., Sellam, N., Vidailhet, M., Welter, M.-L., & Lalo, E. (2019). "The whole perimeter is difficult": Parkinson’s disease and the conscious experience of walking in everyday environments”: Disability and Rehabilitation, 41(23), 2784–2791. https://doi.org/10.1080/09638288.2018.1479779
   PubMed Web of Science ®Google Scholar
• Petitmengin, C., Navarro, V., & Le Van Quyen, M. (2007). Anticipating seizure: Pre-reflective experience at the center of neuro-phenomenology. Consciousness and Cognition, 16(3), 746–764. https://doi.org/10.1016/j.concog.2007.05.006
   PubMed Web of Science ®Google Scholar
• Petitmengin, C., Remillieux, A., Cahour, B., & Carter-Thomas, S. (2013). A gap in Nisbett and Wilson’s findings? A first-person access to our cognitive processes. Consciousness and Cognition, 22(2), 654–669. https://doi.org/10.1016/j.concog.2013.02.004
   PubMed Web of Science ®Google Scholar
• Petty, N. J., Thomson, O. P., & Stew, G. (2012). Ready for a paradigm shift? Part 1: Introducing the philosophy of qualitative research. Manual Therapy, 17(4), 267–274. https://doi.org/10.1016/j.math.2012.03.006
   PubMedGoogle Scholar
• Pfeiffer, U. J., Schilbach, L., Timmermans, B., Kuzmanovic, B., Georgescu, A. L., Bente, G., & Vogeley, K. (2014). Why we interact: On the functional role of the striatum in the subjective experience of social interaction. NeuroImage, 101, 124–137. https://doi.org/10.1016/j.neuroimage.2014.06.061
   PubMed Web of Science ®Google Scholar
• Pönkänen, L. M., Alhoniemi, A., Leppänen, J. M., & Hietanen, J. K. (2011). Does it make a difference if I have an eye contact with you or with your picture? An ERP study. Social Cognitive and Affective Neuroscience, 6(4), 486–494. https://doi.org/10.1093/scan/nsq068
   PubMed Web of Science ®Google Scholar
• Rinnerthaler, M., Mueller, J., Weichbold, V., Wenning, G. K., & Poewe, W. (2006). Social stigmatization in patients with cranial and cervical dystonia. Movement Disorders, 21(10), 1636–1640. https://doi.org/10.1002/mds.21049
   PubMed Web of Science ®Google Scholar
• Scheer, J., & Groce, N. (1988). Impairment as a human constant: Cross‐cultural and historical perspectives on variation. Journal of Social Issues, 44(1), 23–37. https://doi.org/10.1111/j.1540-4560.1988.tb02046.x
   Web of Science ®Google Scholar
• Sharp, K., & Hewitt, J. (2014). Dance as an intervention for people with Parkinson’s disease: A systematic review and meta-analysis. Neuroscience and Biobehavioral Reviews, 47, 445–456. https://doi.org/10.1016/j.neubiorev.2014.09.009
   PubMed Web of Science ®Google Scholar
• Shulman, L. M., Gruber-Baldini, A. L., Anderson, K. E., Vaughan, C. G., Reich, S. G., Fishman, P. S., & Weiner, W. J. (2008). The evolution of disability in Parkinson disease: Evolution of disability in PD. Movement Disorders, 23(6), 790–796. https://doi.org/10.1002/mds.21879
   PubMed Web of Science ®Google Scholar
• Sidaway, B., Aaroe, A., Albert, M., LePage, K., Desrosiers, G., Keith, M., Laniewski, A., Perry, J., Morell, C., Prada, J., Stuart, J., & Voicechovski, R. (2018). Visual detection of affordances for aperture negotiation in people with Parkinson disease. Neuropsychologia, 120, 59–64. https://doi.org/10.1016/j.neuropsychologia.2018.10.010
   PubMed Web of Science ®Google Scholar
• Silberstein, M., & Chemero, A. (2012). Complexity and extended phenomenological-cognitive systems. Topics in Cognitive Science, 4(1), 35–50. https://doi.org/10.1111/j.1756-8765.2011.01168.x
   PubMed Web of Science ®Google Scholar
• Smith, J. A. (1996). Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychology & Health, 11(2), 261–271. https://doi.org/10.1080/08870449608400256
   Web of Science ®Google Scholar
• Smith, J. A. (2004). Reflecting on the development of interpretative phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology, 1(1), 39–54. https://doi.org/10.1191/1478088704qp004oa
   Web of Science ®Google Scholar
• Smith, J. A., & Osborn, M. (2015). Interpretive phenomenological analysis. In Qualitative psychology: A practical guide to research methods (3rd ed., pp. 25–52). Sage Publications.
   Google Scholar
• Soundy, A., Stubbs, B., & Roskell, C. (2014). The experience of Parkinson’s disease: a systematic review and meta-ethnography. The Scientific World Journal, 2014, 613592. https://doi.org/10.1155/2014/613592
   Google Scholar
• Stanley-Hermanns, M., & Engebretson, J. (2010). Sailing the stormy seas: The illness experience of persons with Parkinson’s disease. The Qualitative Report, 15(2), 340.
   Google Scholar
• Takakusaki, K., Tomita, N., & Yano, M. (2008). Substrates for normal gait and pathophysiology of gait disturbances with respect to the basal ganglia dysfunction. Journal of Neurology, 255(S4), 19–29. https://doi.org/10.1007/s00415-008-4004-7
   PubMedGoogle Scholar
• Tan, D. M., McGinley, J. L., Danoudis, M. E., Iansek, R., & Morris, M. E. (2011). Freezing of gait and activity limitations in people with Parkinson’s disease. Archives of Physical Medicine and Rehabilitation, 92(7), 1159–1165. https://doi.org/10.1016/j.apmr.2011.02.003
   PubMed Web of Science ®Google Scholar
• Theureau, J. (2002). Dynamic, living, social and cultural complex systems: Principles of design-oriented analysis. Revue D’intelligence Artificielle, 16(4–5), 485–516. https://doi.org/10.3166/ria.16.485-516
   Google Scholar
• Theureau, J. (2003). Course-of-action analysis and course-of-action-centered design. In Handbook of cognitive task design (pp. 55–81). CRC Press.
   Google Scholar
• Theureau, J. (2004). L’hypothèse de la cognition (ou action) située et la tradition d’analyse du travail de l’ergonomie de langue française. Activites, 01(2), 11–25. https://doi.org/10.4000/activites.1219
   Google Scholar
• Thompson, E. (2004). Life and mind: From autopoiesis to neurophenomenology. A tribute to Francisco Varela. Phenomenology and the Cognitive Sciences, 3(4), 381–398. https://doi.org/10.1023/B:PHEN.0000048936.73339.dd
   Google Scholar
• Thordardottir, B., Nilsson, M. H., Iwarsson, S., & Haak, M. (2014). "You plan, but you never know"-participation among people with different levels of severity of Parkinson’s disease”. Disability and Rehabilitation, 36(26), 2216–2224. https://doi.org/10.3109/09638288.2014.898807
   PubMed Web of Science ®Google Scholar
• Tombaugh, T. N., & McIntyre, N. J. (1992). The mini-mental state examination: A comprehensive review. Journal of the American Geriatrics Society, 40(9), 922–935. https://doi.org/10.1111/j.1532-5415.1992.tb01992.x
   PubMed Web of Science ®Google Scholar
• Van Den Eeden, S. K., Tanner, C. M., Bernstein, A. L., Fross, R. D., Leimpeter, A., Bloch, D. A., & Nelson, L. M. (2003). Incidence of Parkinson’s disease: Variation by age, gender, and race/ethnicity. American Journal of Epidemiology, 157(11), 1015–1022. https://doi.org/10.1093/aje/kwg068
   PubMed Web of Science ®Google Scholar
• Varela, F. J., Rosch, E., & Thompson, E. (1992). The embodied mind: Cognitive science and human experience. MIT Press.
   Google Scholar
• Vescovelli, F., Sarti, D., & Ruini, C. (2018). Subjective and psychological well-being in Parkinson’s Disease: A systematic review. Acta Neurologica Scandinavica, 138(1), 12–23. https://doi.org/10.1111/ane.12946
   PubMed Web of Science ®Google Scholar
• Wetherell, M. (2012). Affect and Emotion (1st ed.). SAGE Publications Ltd.
   Google Scholar
• WHO. (2018). International Classification of Functioning, Disability and Health (ICF). WHO. http://www.who.int/classifications/icf/en/
   Google Scholar
• Wilkinson, R. G., & Pickett, K. E. (2009). Income inequality and social dysfunction. Annual Review of Sociology, 35(1), 493–511. https://doi.org/10.1146/annurev-soc-070308-115926
   Web of Science ®Google Scholar