Skip to main content
Erschienen in: Quality of Life Research 12/2016

03.06.2016

Stigma as a key determinant of health-related quality of life in Parkinson’s disease

verfasst von: Hui-Ing Ma, Marie Saint-Hilaire, Cathi A. Thomas, Linda Tickle-Degnen

Erschienen in: Quality of Life Research | Ausgabe 12/2016

Einloggen

Aktivieren Sie unsere intelligente Suche, um passende Fachinhalte oder Patente zu finden.

search-config
loading …

Abstract

Purpose

People with Parkinson’s disease (PD) may experience stigma due to their visible features of movement and communication difficulties. This paper aimed to examine the role of experienced stigma in health-related quality of life (QOL), after controlling for personal and clinical characteristics.

Methods

This is a preliminary analysis of a subset of baseline data from the Social Self-Management of Parkinson’s Disease Study (SocM-PD), an ongoing 3-year prospective cohort study. Seventy-three people with PD (M age = 65.72, 29 women) participated in this study. Hierarchical multiple regression analyses were used to determine the role of stigma in QOL, after controlling for gender, disease severity, depression, and motor difficulties of daily living.

Results

Significant correlations were found between QOL with gender (r = .26), disease severity (r = .38), depression (r = .65), motor difficulties of daily living (r = .71), and stigma (r = .83). After controlling for the significant covariates, stigma made a significant and unique contribution to the explanation of QOL by 13.7 % (p < 0.001). A final hierarchical multiple regression with stigma and the 4 covariates revealed an overall model that explained 77.8 % of the total variance of QOL (F [5, 63] = 48.79, p < 0.001).

Conclusions

Experienced stigma appears to be a key determinant of QOL in people with PD. The results suggest the importance of further understanding stigma in PD to develop possible intervention strategies. Future work is also needed to verify the results with a larger and longitudinal dataset of the SocM-PD.

Sie haben noch keine Lizenz? Dann Informieren Sie sich jetzt über unsere Produkte:

Springer Professional "Wirtschaft+Technik"

Online-Abonnement

Mit Springer Professional "Wirtschaft+Technik" erhalten Sie Zugriff auf:

  • über 102.000 Bücher
  • über 537 Zeitschriften

aus folgenden Fachgebieten:

  • Automobil + Motoren
  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Elektrotechnik + Elektronik
  • Energie + Nachhaltigkeit
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Maschinenbau + Werkstoffe
  • Versicherung + Risiko

Jetzt Wissensvorsprung sichern!

Springer Professional "Wirtschaft"

Online-Abonnement

Mit Springer Professional "Wirtschaft" erhalten Sie Zugriff auf:

  • über 67.000 Bücher
  • über 340 Zeitschriften

aus folgenden Fachgebieten:

  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Versicherung + Risiko




Jetzt Wissensvorsprung sichern!

Anhänge
Nur mit Berechtigung zugänglich
Literatur
1.
Zurück zum Zitat Gowers, W. R. (1888). A manual of diseases of the nervous system (Vol. 2). London: J & A Churchill. Gowers, W. R. (1888). A manual of diseases of the nervous system (Vol. 2). London: J & A Churchill.
2.
Zurück zum Zitat Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster Inc. Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster Inc.
3.
Zurück zum Zitat Nijhof, G. (1995). Parkinson’s disease as a problem of shame in public appearance. Sociology of Health & Illness, 17(2), 193–205.CrossRef Nijhof, G. (1995). Parkinson’s disease as a problem of shame in public appearance. Sociology of Health & Illness, 17(2), 193–205.CrossRef
4.
Zurück zum Zitat 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.CrossRef 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.CrossRef
5.
Zurück zum Zitat Hermanns, M. (2013). The invisible and visible stigmatization of Parkinson’s disease. Journal of the American Association of Nurse Practitioners, 25(10), 563–566.PubMed Hermanns, M. (2013). The invisible and visible stigmatization of Parkinson’s disease. Journal of the American Association of Nurse Practitioners, 25(10), 563–566.PubMed
6.
Zurück zum Zitat Simpson, J., McMillan, H., & Reeve, D. (2013). Reformulating psychological difficulties in people with Parkinson’s disease: The potential of a social relational approach to disablism. Parkinsons Disease, 2013, 608562. Simpson, J., McMillan, H., & Reeve, D. (2013). Reformulating psychological difficulties in people with Parkinson’s disease: The potential of a social relational approach to disablism. Parkinsons Disease, 2013, 608562.
7.
Zurück zum Zitat Caap-Ahlgren, M., & Lannerheim, L. (2002). Older Swedish women’s experiences of living with symptoms related to Parkinson’s disease. Journal of Advanced Nursing, 39(1), 87–95.CrossRefPubMed Caap-Ahlgren, M., & Lannerheim, L. (2002). Older Swedish women’s experiences of living with symptoms related to Parkinson’s disease. Journal of Advanced Nursing, 39(1), 87–95.CrossRefPubMed
8.
Zurück zum Zitat Rao, D., Choi, S. W., Victorson, D., Bode, R., Peterman, A., Heinemann, A., et al. (2009). Measuring stigma across neurological conditions: The development of the stigma scale for chronic illness (SSCI). Quality of Life Research, 18(5), 585–595.CrossRefPubMedPubMedCentral Rao, D., Choi, S. W., Victorson, D., Bode, R., Peterman, A., Heinemann, A., et al. (2009). Measuring stigma across neurological conditions: The development of the stigma scale for chronic illness (SSCI). Quality of Life Research, 18(5), 585–595.CrossRefPubMedPubMedCentral
9.
Zurück zum Zitat Moore, S., & Knowles, S. (2007). Beliefs and knowledge about Parkinson’s disease. E-Journal of Applied Psychology, 2(1), 15–21.CrossRef Moore, S., & Knowles, S. (2007). Beliefs and knowledge about Parkinson’s disease. E-Journal of Applied Psychology, 2(1), 15–21.CrossRef
10.
Zurück zum Zitat Tickle-Degnen, L., Zebrowitz, L. A., & Ma, H. I. (2011). Culture, gender and health care stigma: Practitioners’ response to facial masking experienced by people with Parkinson’s disease. Social Science and Medicine, 73(1), 95–102.CrossRefPubMedPubMedCentral Tickle-Degnen, L., Zebrowitz, L. A., & Ma, H. I. (2011). Culture, gender and health care stigma: Practitioners’ response to facial masking experienced by people with Parkinson’s disease. Social Science and Medicine, 73(1), 95–102.CrossRefPubMedPubMedCentral
11.
Zurück zum Zitat Hemmesch, A. R., Tickle-Degnen, L., & Zebrowitz, L. A. (2009). The influence of facial masking and sex on older adults’ impressions of individuals with Parkinson’s disease. Psychology and Aging, 24(3), 542–549.CrossRefPubMedPubMedCentral Hemmesch, A. R., Tickle-Degnen, L., & Zebrowitz, L. A. (2009). The influence of facial masking and sex on older adults’ impressions of individuals with Parkinson’s disease. Psychology and Aging, 24(3), 542–549.CrossRefPubMedPubMedCentral
12.
Zurück zum Zitat Hemmesch, A. R. (2014). The detrimental effects of atypical nonverbal behavior on older adults’ first impressions of individuals with Parkinson’s disease. Psychology and Aging, 29(3), 521–527.CrossRefPubMedPubMedCentral Hemmesch, A. R. (2014). The detrimental effects of atypical nonverbal behavior on older adults’ first impressions of individuals with Parkinson’s disease. Psychology and Aging, 29(3), 521–527.CrossRefPubMedPubMedCentral
13.
Zurück zum Zitat Schrag, A., Jahanshahi, M., & Quinn, N. P. (2001). What contributes to depression in Parkinson’s disease? Psychological Medicine, 31(01), 65–73.CrossRefPubMed Schrag, A., Jahanshahi, M., & Quinn, N. P. (2001). What contributes to depression in Parkinson’s disease? Psychological Medicine, 31(01), 65–73.CrossRefPubMed
14.
Zurück zum Zitat Whatley, A. D., DiIorio, C. K., & Yeager, K. (2010). Examining the relationships of depressive symptoms, stigma, social support and regimen-specific support on quality of life in adult patients with epilepsy. Health Education Research, 25(4), 575–584.CrossRefPubMedPubMedCentral Whatley, A. D., DiIorio, C. K., & Yeager, K. (2010). Examining the relationships of depressive symptoms, stigma, social support and regimen-specific support on quality of life in adult patients with epilepsy. Health Education Research, 25(4), 575–584.CrossRefPubMedPubMedCentral
15.
Zurück zum Zitat Holzemer, W. L., Human, S., Arudo, J., Rosa, M. E., Hamilton, M. J., Corless, I., et al. (2009). Exploring HIV stigma and quality of life for persons living with HIV infection. Journal of the Association of Nurses in AIDS Care, 20(3), 161–168.CrossRefPubMed Holzemer, W. L., Human, S., Arudo, J., Rosa, M. E., Hamilton, M. J., Corless, I., et al. (2009). Exploring HIV stigma and quality of life for persons living with HIV infection. Journal of the Association of Nurses in AIDS Care, 20(3), 161–168.CrossRefPubMed
16.
Zurück zum Zitat Brown Johnson, C. G., Brodsky, J. L., & Cataldo, J. K. (2014). Lung cancer stigma, anxiety, depression, and quality of life. Journal of Psychosocial Oncology, 32(1), 59–73.CrossRefPubMed Brown Johnson, C. G., Brodsky, J. L., & Cataldo, J. K. (2014). Lung cancer stigma, anxiety, depression, and quality of life. Journal of Psychosocial Oncology, 32(1), 59–73.CrossRefPubMed
17.
Zurück zum Zitat Soh, S.-E., Morris, M. E., & McGinley, J. L. (2011). Determinants of health-related quality of life in Parkinson’s disease: A systematic review. Parkinsonism & related disorders, 17(1), 1–9.CrossRef Soh, S.-E., Morris, M. E., & McGinley, J. L. (2011). Determinants of health-related quality of life in Parkinson’s disease: A systematic review. Parkinsonism & related disorders, 17(1), 1–9.CrossRef
18.
Zurück zum Zitat Soh, S.-E., McGinley, J. L., Watts, J. J., Iansek, R., Murphy, A. T., Menz, H. B., et al. (2013). Determinants of health-related quality of life in people with Parkinson’s disease: A path analysis. Quality of Life Research, 22(7), 1543–1553.CrossRefPubMed Soh, S.-E., McGinley, J. L., Watts, J. J., Iansek, R., Murphy, A. T., Menz, H. B., et al. (2013). Determinants of health-related quality of life in people with Parkinson’s disease: A path analysis. Quality of Life Research, 22(7), 1543–1553.CrossRefPubMed
19.
Zurück zum Zitat Tickle-Degnen, L., Saint-Hilaire, M., Thomas, C. A., Habermann, B., Martinez, L. S., Terrin, N., et al. (2014). Emergence and evolution of social self-management of Parkinson’s disease: Study protocol for a 3-year prospective cohort study. BMC Neurology, 14(1), 95.CrossRefPubMedPubMedCentral Tickle-Degnen, L., Saint-Hilaire, M., Thomas, C. A., Habermann, B., Martinez, L. S., Terrin, N., et al. (2014). Emergence and evolution of social self-management of Parkinson’s disease: Study protocol for a 3-year prospective cohort study. BMC Neurology, 14(1), 95.CrossRefPubMedPubMedCentral
20.
Zurück zum Zitat Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381.CrossRefPubMed Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, N., & Conde, J. G. (2009). Research electronic data capture (REDCap)—A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381.CrossRefPubMed
21.
Zurück zum Zitat Stevelink, S. A. M., Wu, I. C., Voorend, C. G. N., & van Brakel, W. H. (2012). The psychometric assessment of internalized stigma instruments: A systematic review. Stigma Research and Action, 2(2), 100–118. Stevelink, S. A. M., Wu, I. C., Voorend, C. G. N., & van Brakel, W. H. (2012). The psychometric assessment of internalized stigma instruments: A systematic review. Stigma Research and Action, 2(2), 100–118.
22.
Zurück zum Zitat Almeida, O. P., & Almeida, S. A. (1999). Short versions of the geriatric depression scale: A study of their validity for the diagnosis of a major depressive episode according to ICD-10 and DSM-IV. International Journal of Geriatric Psychiatry, 14(10), 858–865.CrossRefPubMed Almeida, O. P., & Almeida, S. A. (1999). Short versions of the geriatric depression scale: A study of their validity for the diagnosis of a major depressive episode according to ICD-10 and DSM-IV. International Journal of Geriatric Psychiatry, 14(10), 858–865.CrossRefPubMed
23.
Zurück zum Zitat Meara, J., Mitchelmore, E., & Hobson, P. (1999). Use of the GDS-15 geriatric depression scale as a screening instrument for depressive symptomatology in patients with Parkinson’s disease and their carers in the community. Age and Ageing, 28(1), 35–38.CrossRefPubMed Meara, J., Mitchelmore, E., & Hobson, P. (1999). Use of the GDS-15 geriatric depression scale as a screening instrument for depressive symptomatology in patients with Parkinson’s disease and their carers in the community. Age and Ageing, 28(1), 35–38.CrossRefPubMed
24.
Zurück zum Zitat Goetz, C. G., Tilley, B. C., Shaftman, S. R., Stebbins, G. T., Fahn, S., Martinez-Martin, P., et al. (2008). Movement Disorder Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS): Scale presentation and clinimetric testing results. Movement Disorders, 23(15), 2129–2170.CrossRefPubMed Goetz, C. G., Tilley, B. C., Shaftman, S. R., Stebbins, G. T., Fahn, S., Martinez-Martin, P., et al. (2008). Movement Disorder Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS): Scale presentation and clinimetric testing results. Movement Disorders, 23(15), 2129–2170.CrossRefPubMed
25.
Zurück zum Zitat Jenkinson, C., Fitzpatrick, R., & Peto, V. (1998). The Parkinson’s disease questionnaire: User manual for the PDQ-39, PDQ-8 and PDQ summary index. Oxford: University of Oxford. Jenkinson, C., Fitzpatrick, R., & Peto, V. (1998). The Parkinson’s disease questionnaire: User manual for the PDQ-39, PDQ-8 and PDQ summary index. Oxford: University of Oxford.
26.
Zurück zum Zitat Jenkinson, C., Fitzpatrick, R., Peto, V., Greenhall, R., & Hyman, N. (1997). The Parkinson’s Disease Questionnaire (PDQ-39): Development and validation of a Parkinson’s disease summary index score. Age and Ageing, 26(5), 353–357.CrossRefPubMed Jenkinson, C., Fitzpatrick, R., Peto, V., Greenhall, R., & Hyman, N. (1997). The Parkinson’s Disease Questionnaire (PDQ-39): Development and validation of a Parkinson’s disease summary index score. Age and Ageing, 26(5), 353–357.CrossRefPubMed
28.
Zurück zum Zitat Scambler, G., & Hopkins, A. (1986). Being epileptic: Coming to terms with stigma. Sociology of Health & Illness, 8(1), 26–43.CrossRef Scambler, G., & Hopkins, A. (1986). Being epileptic: Coming to terms with stigma. Sociology of Health & Illness, 8(1), 26–43.CrossRef
29.
Zurück zum Zitat Jacoby, A. (1994). Felt versus enacted stigma: A concept revisited: evidence from a study of people with epilepsy in remission. Social Science and Medicine, 38(2), 269–274.CrossRefPubMed Jacoby, A. (1994). Felt versus enacted stigma: A concept revisited: evidence from a study of people with epilepsy in remission. Social Science and Medicine, 38(2), 269–274.CrossRefPubMed
30.
Zurück zum Zitat Corrigan, P. W., & Watson, A. C. (2002). The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice, 9(1), 35–53. Corrigan, P. W., & Watson, A. C. (2002). The paradox of self-stigma and mental illness. Clinical Psychology: Science and Practice, 9(1), 35–53.
31.
Zurück zum Zitat Podsakoff, P. M., MacKenzie, S. B., Lee, J. Y., & Podsakoff, N. P. (2003). Common method biases in behavioral research: A critical review of the literature and recommended remedies. Journal of Applied Psychology, 88(5), 879–903.CrossRefPubMed Podsakoff, P. M., MacKenzie, S. B., Lee, J. Y., & Podsakoff, N. P. (2003). Common method biases in behavioral research: A critical review of the literature and recommended remedies. Journal of Applied Psychology, 88(5), 879–903.CrossRefPubMed
Metadaten
Titel
Stigma as a key determinant of health-related quality of life in Parkinson’s disease
verfasst von
Hui-Ing Ma
Marie Saint-Hilaire
Cathi A. Thomas
Linda Tickle-Degnen
Publikationsdatum
03.06.2016
Verlag
Springer International Publishing
Erschienen in
Quality of Life Research / Ausgabe 12/2016
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1329-z

Weitere Artikel der Ausgabe 12/2016

Quality of Life Research 12/2016 Zur Ausgabe