Research investigating the psychological difficulties experienced by people with Parkinson's disease (PD) is dominated by individualistic neurobiological and psychological perspectives. Therefore, this opinion paper draws on a reformulation of the social model of disability, Thomas' (1999) and (2007) social relational approach to disablism, to offer an alternative way of conceptualising psychological difficulties experienced by people with PD. This opinion paper explores the ways in which socially imposed restrictions and stigma may contribute to psychological difficulties by using Thomas' (2007) concept of psychoemotional disablism. By using the lens of psychoemotional disablism, this paper demonstrates that people with PD can be exposed to stigmatising attitudes and interactions which could contribute to restrictions, feelings of shame, and psychological difficulties such as depression. Accordingly, it is argued that further attention to the link between psychological difficulties and social dimensions of disablism in PD is needed in both research arenas and clinical practice to broaden understandings and interventions for people with PD. 1. Introduction In addition to motor symptoms, people with Parkinson’s disease (PD) can experience psychological difficulties such as depression [1], anxiety [2], apathy [3], psychosis [4], and problems with impulse control [5] (see [6] for further details). Such nonmotor difficulties can be as, if not more, challenging as motor difficulties to people with PD [7] and their caregivers [8] and are a major contributor to patient perceptions of quality of life (e.g., see [9, 10]). In terms of frameworks for understanding the psychological difficulties experienced by people with PD, Brown and Jahanshahi [11] highlighted that neurobiological conceptualisations dominate. Neurobiological conceptualisations assume that psychological difficulties occur as a direct result of pathological neurobiological processes within an individual, such as changes in dopaminergic systems; for example, see [12]. Indeed, this assumption is fundamental in that much psychiatrically driven research on psychological outcomes in people with PD, the primary role given to neurobiological dysfunction is not even questioned, for example, [13, 14]. However, it has been argued that there is a need to broaden conceptualisations of psychological difficulties associated with PD beyond neurobiological models; for example, see [11, 15, 16] and psychological approaches assessing variables such as illness cognitions, personality, and coping styles have
References
[1]
J. S. A. M. Reijnders, U. Ehrt, W. E. J. Weber, D. Aarsland, and A. F. G. Leentjens, “A systematic review of prevalence studies of depression in Parkinson's disease,” Movement Disorders, vol. 23, no. 2, pp. 183–189, 2008.
[2]
K. Walsh and G. Bennett, “Parkinson's disease and anxiety,” Postgraduate Medical Journal, vol. 77, no. 904, pp. 89–93, 2001.
[3]
G. C. Pluck and R. G. Brown, “Apathy in Parkinson's disease,” Journal of Neurology, Neurosurgery & Psychiatry, vol. 73, no. 6, pp. 636–642, 2002.
[4]
H. A. Hanagasi and M. Emre, “Treatment of behavioural symptoms and dementia in Parkinson's disease,” Fundamental and Clinical Pharmacology, vol. 19, no. 2, pp. 133–146, 2005.
[5]
D. Weintraub, J. Koester, M. N. Potenza et al., “Impulse control disorders in Parkinson disease: a cross-sectional study of 3090 patients,” Archives of Neurology, vol. 67, no. 5, pp. 589–595, 2010.
[6]
F. Schneider, A. Althaus, V. Backes, and R. Dodel, “Psychiatric symptoms in Parkinson's disease,” European Archives of Psychiatry and Clinical Neuroscience, vol. 258, no. 5, pp. 55–59, 2008.
[7]
T. Witjas, E. Kaphan, J. P. Azulay et al., “Nonmotor fluctuations in Parkinson's disease: frequent and disabling,” Neurology, vol. 59, no. 3, pp. 408–413, 2002.
[8]
D. Aarsland, J. P. Larsen, N. G. Lim et al., “Range of neuropsychiatric disturbances in patients with Parkinson's disease,” Journal of Neurology, Neurosurgery & Psychiatry, vol. 67, no. 4, pp. 492–496, 1999.
[9]
A. Schrag, M. Jahanshahi, and N. P. Quinn, “How does Parkinson's disease affect quality of life? A comparison with quality of life in the general population,” Movement Disorders, vol. 15, pp. 1112–1118, 2001.
[10]
A. Schrag, M. Jahanshahi, and N. Quinn, “What contributes to quality of life in patients with Parkinson's disease?” Journal of Neurology, Neurosurgery & Psychiatry, vol. 69, no. 3, pp. 308–312, 2000.
[11]
R. Brown and M. Jahanshahi, “Depression in Parkinson's disease: a psychosocial viewpoint,” Advances in Neurology, vol. 65, pp. 61–84, 1995.
[12]
K. R. Chaudhuri and A. H. Schapira, “Non-motor symptoms of Parkinson's disease: dopaminergic pathophysiology and treatment,” The Lancet Neurology, vol. 8, no. 5, pp. 464–474, 2009.
[13]
A. F. G. Leentjens, B. Scholtissen, F. W. Vreeling, and F. R. J. Verhey, “The serotonergic hypothesis for depression in Parkinson's disease: an experimental approach,” Neuropsychopharmacology, vol. 31, no. 5, pp. 1009–1015, 2006.
[14]
D. Weintraub and D. J. Burn, “Parkinson's disease: the quintessential neuropsychiatric disorder,” Movement Disorders, vol. 26, no. 6, pp. 1022–1031, 2011.
[15]
M. Delaney, J. Simpson, and I. Leroi, “Perceptions of cause and control of impulse control behaviours in people with Parkinson's disease,” British Journal of Health Psychology, vol. 17, no. 3, pp. 522–535, 2012.
[16]
D. Todd, J. Simpson, and C. Murray, “An interpretative phenomenological analysis of delusions in people with Parkinson's disease,” Disability and Rehabilitation, vol. 32, no. 15, pp. 1291–1299, 2010.
[17]
F. J. R. Eccles, C. Murray, and J. Simpson, “Perceptions of cause and control in people with Parkinson's disease,” Disability and Rehabilitation, vol. 33, no. 15-16, pp. 1409–1420, 2011.
[18]
L. D. Frazier, “Coping with disease-related stressors in Parkinson's disease,” The Gerontologist, vol. 40, no. 1, pp. 53–63, 2000.
[19]
D. de Ridder, K. Schreurs, and J. Bensing, “The relative benefits of being optimistic: optimism as a coping resource in multiple sclerosis and Parkinson's disease,” British Journal of Health Psychology, vol. 5, no. 2, pp. 141–155, 2000.
[20]
D. Goodley, “The psychology of disability,” in Routledge Handbook of Disability Studies, N. Watson, A. Roulstone, and C. Thomas, Eds., pp. 310–324, Routledge, London, UK, 2012.
[21]
D. Reeve, “Towards a psychology of disability: the emotional effects of living in a disabling society,” in Disability and Psychology: Critical Introductions and Reflections, D. Goodley and R. Lawthom, Eds., pp. 94–107, Macmillan, Basingstoke, UK, 2006.
[22]
J. Simpson, G. Lekwuwa, and T. Crawford, “Illness beliefs and psychological outcome in people with Parkinson's disease,” Chronic Illness, vol. 9, no. 2, pp. 165–176, 2013.
[23]
D. Evans and P. Norman, “Illness representations, coping and psychological adjustment to Parkinson's disease,” Psychology & Health, vol. 24, no. 10, pp. 1181–1196, 2009.
[24]
C. Thomas, Female Forms: Experiencing and Understanding Disability, Open University Press, Buckingham, UK, 1999.
[25]
M. Oliver, Understanding Disability: From Theory to Practice, Macmillan, Basingstoke, UK, 2009.
[26]
A. Rojo, M. Aguilar, M. T. Garolera, E. Cubo, I. Navas, and S. Quintana, “Depression in Parkinson's disease: clinical correlates and outcome,” Parkinsonism and Related Disorders, vol. 10, no. 1, pp. 23–28, 2003.
[27]
M. Oliver, Understanding Disability: From Theory to Practice, Macmillan, Basingstoke, UK, 1996.
[28]
C. Barnes, “Understanding the social model of disability: past, present and future,” in Routledge Handbook of Disability Studies, N. Watson, A. Roulstone, and C. Thomas, Eds., pp. 12–29, Routledge, London, UK, 2012.
[29]
C. Thomas, Sociologies of Disability and Illness: Contested Ideas in Disability Studies and Medical Sociology, Macmillan, Basingstoke, UK, 2007.
[30]
C. Thomas, “How is disability understood? An examination of sociological approaches,” Disability and Society, vol. 19, no. 6, pp. 569–583, 2004.
[31]
D. Reeve, “Psycho-emotional dimensions of disability and the social model,” in Implementing the Social Model of Disability: Theory and Research, C. Barnes and G. Mercer, Eds., pp. 83–100, The Disability Press, Leeds, UK, 2004.
[32]
D. Reeve, “Psycho-emotional disablism: the missing link?” in Routledge Handbook of Disability Studies, N. Watson, A. Roulstone, and C. Thomas, Eds., pp. 78–93, Routledge, London, UK, 2012.
[33]
D. Reeve, “Psycho-emotional disablism in the lives of people experiencing mental distress,” in Distress or Disability? Proceedings of a Symposium Held at Lancaster University, J. Anderson, B. Sapey, and H. Spandler, Eds., pp. 24–29, Lancaster University: Centre for Disability Research (CeDR), Lancaster, UK, 2011.
[34]
D. Goodley, “‘Learning difficulties’, the social model of disability and impairment: challenging epistemologies,” Disability and Society, vol. 16, no. 2, pp. 207–231, 2001.
[35]
J. Gilliard, R. Means, A. Beattie, and G. Daker-White, “Dementia care in England and the social model of disability,” Dementia, vol. 4, no. 4, pp. 571–586, 2005.
[36]
T. Kitwood, Dementia Reconsidered, Open University Press, Berkshire, UK, 1997.
[37]
P. Beresford, “Thinking about “mental health”: towards a social model,” Journal of Mental Health, vol. 11, no. 6, pp. 581–584, 2002.
[38]
J. Mulvany, “Disability, impairment or illness? The relevance of the social model of disability to the study of mental disorder,” Sociology of Health & Illness, vol. 22, no. 5, pp. 582–601, 2000.
[39]
J. Ferrie, “The psycho-emotional impact of impairment effects: where chronic illness meets disability studies,” in Paper Presented at a Symposium Held at Lancaster University, Lancaster University: Centre for Disability Research (CeDR), Lancaster, UK, November 2011.
[40]
C. Oldman, “Later life and the social model of disability: a comfortable partnership?” Ageing and Society, vol. 22, no. 6, pp. 791–806, 2002.
[41]
N. Quackenbush, “Speaking of—and as—stigma: performativity and Parkinson's in the rhetoric of Michael J. Fox.,” Disability Studies Quarterly, vol. 31, no. 3, p. 12, 2011.
[42]
C. E. Clarke, R. M. Zobkiw, and E. Gullaksen, “Quality of life and care in Parkinson's disease,” The British Journal of Clinical Practice, vol. 49, no. 6, pp. 288–293, 1995.
[43]
L. J. Findley, “The economic impact of Parkinson's disease,” Parkinsonism and Related Disorders, vol. 13, pp. S8–S12, 2007.
[44]
K. K. Martikainen, T. H. Luukkaala, and R. J. Marttila, “Parkinson's disease and working capacity,” Movement Disorders, vol. 21, no. 12, pp. 2187–2191, 2006.
[45]
L. M. Rubenstein, E. A. Chrischilles, and M. D. Voelker, “The impact of Parkinson's disease on health status, health expenditures, and productivity: estimates from the national medical expenditure survey,” PharmacoEconomics, vol. 12, no. 4, pp. 486–498, 1997.
[46]
P. Banks and M. Lawrence, “The disability discrimination act, a necessary, but not sufficient safeguard for people with progressive conditions in the workplace? The experiences of younger people with Parkinson's disease,” Disability and Rehabilitation, vol. 28, no. 1, pp. 13–24, 2006.
[47]
A. Schrag and P. Banks, “Time of loss of employment in Parkinson's disease,” Movement Disorders, vol. 21, no. 11, pp. 1839–1843, 2006.
[48]
S. M. Calne, S. C. Lidstone, and A. Kumar, “Psychosocial issues in young-onset Parkinson's disease: current research and challenges,” Parkinsonism & Related Disorders, vol. 14, no. 2, pp. 143–150, 2008.
[49]
T. A. Zesiewicz, A. Patel-Larson, R. A. Hauser, and K. L. Sullivan, “Social security disability insurance (SSDI) in Parkinson's disease,” Disability and Rehabilitation, vol. 29, no. 24, pp. 1934–1936, 2007.
[50]
G. Waddell and A. K. Burton, Is Work Good for Your Health and Well-Being?The Stationery Office, Norwich, UK, 2006.
[51]
J. Benharoch and T. Wiseman, “Participation in occupations: some experiences of people with Parkinson's disease,” British Journal of Occupational Therapy, vol. 67, no. 9, pp. 380–387, 2004.
[52]
A. Schrag, A. Hovris, D. Morley, N. Quinn, and M. Jahanshahi, “Young- versus older-onset Parkinson's disease: impact of disease and psychosocial consequences,” Movement Disorders, vol. 18, no. 11, pp. 1250–1256, 2003.
[53]
E. Goffman, Stigma: Notes on the Management of Spoiled Identity, Simon & Schuster, New York, NY, USA, 1963.
[54]
B. G. Link and J. C. Phelan, “Conceptualizing stigma,” Annual Review of Sociology, vol. 27, pp. 363–385, 2001.
[55]
V. Peto, C. Jenkinson, R. Fitzpatrick, and R. Greenhall, “The development and validation of a short measure of functioning and well being for individuals with Parkinson's disease,” Quality of Life Research, vol. 4, no. 3, pp. 241–248, 1995.
[56]
S. Chapuis, L. Ouchchane, O. Metz, L. Gerbaud, and F. Durif, “Impact of the motor complications of Parkinson's disease on the quality of life,” Movement Disorders, vol. 20, no. 2, pp. 224–230, 2005.
[57]
T. Dubayova, I. Nagyova, E. Havlikova et al., “Neuroticism and extraversion in association with quality of life in patients with Parkinson's disease,” Quality of Life Research, vol. 18, no. 1, pp. 33–42, 2009.
[58]
N. Klepac, S. Pikija, T. Kralji？ et al., “Association of rural life setting and poorer quality of life in Parkinson's disease patients: a cross-sectional study in Croatia,” European Journal of Neurology, vol. 14, no. 2, pp. 194–198, 2007.
[59]
A. Schrag, M. Jahanshahi, and N. P. Quinn, “What contributes to depression in Parkinson's disease?” Psychological Medicine, vol. 31, no. 1, pp. 65–73, 2001.
[60]
S. C. Burgener and B. Berger, “Measuring perceived stigma in persons with progressive neurological disease: Alzheimer's dementia and Parkinson's disease,” Dementia, vol. 7, no. 1, pp. 31–53, 2008.
[61]
Parkinson's UK, “Press release: people with Parkinson's subject to “intolerable” discrimination and prejudice,” 2013, http://forum.parkinsons.org.uk/about_us/media_centre/press_release_paw_2013.aspx.
[62]
N. Bramley and V. Eatough, “The experience of living with Parkinson's disease: an interpretative phenomenological analysis case study,” Psychology and Health, vol. 20, no. 2, pp. 223–235, 2005.
[63]
M. Caap-Ahlgren, L. Lannerheim, and O. Dehlin, “Older Swedish women's experiences of living with symptoms related to Parkinson's disease,” Journal of Advanced Nursing, vol. 39, no. 1, pp. 87–95, 2002.
[64]
M. Oliver, The Politics of Disablement, Macmillan, Basingstoke, UK, 1992.
[65]
European Parkinson's Disease Association (EPDA), “Perceptions of Parkinson's disease. Survey executive summary,” 2009, http://www.oursocialmedia.com/wp-content/uploads/parkinsons-survey-executive-summary.pdf.
[66]
S. Moore and S. Knowles, “Beliefs and knowledge about Parkinson's disease,” E-Journal of Applied Psychology, vol. 2, no. 1, pp. 15–21, 2006.
[67]
M. Jahanshahi, “The psychosocial impact of Parkinson's disease and its clinical management,” in Neurological Rehabilitation of Parkinson's Diseae, D. Playford, Ed., pp. 25–47, Martin Dunitz, London, UK, 2003.
[68]
G. Joachim and S. Acorn, “Stigma of visible and invisible chronic conditions,” Journal of Advanced Nursing, vol. 32, no. 1, pp. 243–248, 2000.
[69]
L. S. Rintamaki, W. P. Witt, F. M. Weaver, R. S. Malis, D. Breslow, and T. Simuni, “The experience of stigma among people living with Parkinson's disease,” Movement Disorders, vol. 21, pp. 135–136, 2006.
[70]
A. R. Hemmesch, The stigmatizing effects of facial masking and abnormal bodily movement on older adult's first impressions of individuals with Parkinson's disease [Ph.D. thesis], Brandeis University, Waltham, Mass, USA, 2011.
[71]
M. D. Hyman, “Sociopsychological obstacles to L-Dopa therapy that may limit effectiveness in Parkinsonism,” Journal of the American Geriatrics Society, vol. 20, no. 5, pp. 200–208, 1972.
[72]
E. Singer, “Premature social aging: the social psychological consequences of a chronic illness,” Social Science and Medicine, vol. 8, no. 3, pp. 143–151, 1974.
[73]
A. J. C. Cuddy, M. I. Norton, and S. T. Fiske, “This old stereotype: the pervasiveness and persistence of the elderly stereotype,” Journal of Social Issues, vol. 61, no. 2, pp. 267–285, 2005.
[74]
L. Tickle-Degnen and K. D. Lyons, “Practitioners' impressions of patients with Parkinson's disease: the social ecology of the expressive mask,” Social Science and Medicine, vol. 58, no. 3, pp. 603–614, 2004.
[75]
A. Jaywant and M. D. Pell, “Listener impressions of speakers with Parkinson's disease,” Journal of the International Neuropsychological Society, vol. 16, no. 1, pp. 49–57, 2010.
[76]
A. R. Hemmesch, L. Tickle-Degnen, and L. A. Zebrowitz, “The influence of facial masking and sex on older adults' impressions of individuals with Parkinson's disease,” Psychology and Aging, vol. 24, no. 3, pp. 542–549, 2009.
[77]
K. D. Lyons, L. Tickle-Degnen, A. Henry, and E. Cohn, “Impressions of personality in Parkinson's disease: can rehabilitation practitioners see beyond the symptoms?” Rehabilitation Psychology, vol. 49, no. 4, pp. 328–333, 2004.
[78]
L. Tickle-Degnen, L. A. Zebrowitz, and H.-I. Ma, “Culture, gender and health care stigma: practitioners' response to facial masking experienced by people with Parkinson's disease,” Social Science and Medicine, vol. 73, no. 1, pp. 95–102, 2011.
[79]
A. McKinlay, R. C. Grace, J. C. Dalrymple-Alford, T. J. Anderson, J. Fink, and D. Roger, “Neuropsychiatric problems in Parkinson's disease: comparisons between self and caregiver report,” Aging and Mental Health, vol. 12, no. 5, pp. 647–653, 2008.
[80]
K. Paterson, “It's about time! Understanding the experiences of speech impairment,” in Routledge Handbook of Disability Studies, N. Watson, A. Roulstone, and C. Thomas, Eds., pp. 165–177, Routledge, London, UK, 2012.
[81]
G. Nijhof, “Parkinson's disease and a problem of shame in public appearance,” Sociology of Health & Illness, vol. 17, pp. 193–205, 1995.
[82]
J. J. Caspermeyer, E. J. Sylvester, J. F. Drazkowski, G. L. Watson, and J. I. Sirven, “Evaluation of stigmatizing language and medical errors in neurology coverage by US newspapers,” Mayo Clinic Proceedings, vol. 81, no. 3, pp. 300–306, 2006.
[83]
V. A. Earnshaw and D. M. Quinn, “The impact of stigma in healthcare on people living with chronic illnesses,” Journal of Health Psychology, vol. 17, no. 2, pp. 157–168, 2012.
[84]
W. H. van Brakel, “Measuring health-related stigma—a literature review,” Psychology, Health & Medicine, vol. 11, no. 3, pp. 307–334, 2006.
[85]
M. Menza, R. D. Dobkin, and H. Marin, “Treatment of depression in Parkinson's disease,” Current Psychiatry Reports, vol. 8, no. 3, pp. 234–240, 2006.
[86]
J. Posen, O. Moore, D. S. Tassa, K. Ginzburg, M. Drory, and N. Giladi, “Young women with PD: a group work experience,” Social Work in Health Care, vol. 32, no. 1, pp. 77–91, 2000.
[87]
K. Charmaz, “Loss of self: a fundamental form of suffering in the chronically ill,” Sociology of Health & Illness, vol. 5, no. 2, pp. 168–195, 1983.
[88]
A. Haahr, M. Kirkevold, E. O. C. Hall, and K. ？stergaard, “Living with advanced Parkinson's disease: a constant struggle with unpredictability,” Journal of Advanced Nursing, vol. 67, no. 2, pp. 408–417, 2011.
[89]
E. Wressle, C. Engstrand, and A.-K. Granérus, “Living with Parkinson's disease: elderly patients' and relatives' perspective on daily living,” Australian Occupational Therapy Journal, vol. 54, no. 2, pp. 131–139, 2007.
[90]
G. S. Charlton and C. J. Barrow, “Coping and self-help group membership in Parkinson's disease: an exploratory qualitative study,” Health and Social Care in the Community, vol. 10, no. 6, pp. 472–478, 2002.
[91]
L. Fitzpatrick, J. Simpson, and A. Smith, “A qualitative analysis of mindfulness-based cognitive therapy (MBCT) in Parkinson's disease,” Psychology and Psychotherapy, vol. 83, no. 2, pp. 179–192, 2010.
[92]
M. Holloway, “Living with chronic illness: the example of Parkinson's disease,” in Social Work and Disadvantage: Addressing the Roots of Stigma through Association, P. Burke and J. Parker, Eds., pp. 130–145, Jessica Kingsley, London, UK, 2007.
[93]
C. S. Hurt, J. Weinman, R. Lee, and R. G. Brown, “The relationship of depression and disease stage to patient perceptions of Parkinson's disease,” Journal of Health Psychology, vol. 17, no. 7, pp. 1076–1088, 2012.
[94]
K. Oehlberg, F. K. Barg, G. K. Brown, D. Taraborelli, M. B. Stern, and D. Weintraub, “Attitudes regarding the etiology and treatment of depression in Parkinson's disease: a qualitative study,” Journal of Geriatric Psychiatry and Neurology, vol. 21, no. 2, pp. 123–132, 2008.
[95]
P. Martinez-Martin, C. Rodriguez-Blazquez, M. M. Kurtis, and K. R. Chaudhuri, “The impact of non-motor symptoms on health-related quality of life of patients with Parkinson's disease,” Movement Disorders, vol. 26, no. 3, pp. 399–406, 2011.
