Skip to main content

Advertisement

SpringerLink
Log in

Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale

  • Published:
Journal of Behavioral Medicine Aims and scope Submit manuscript

Abstract

The Chronic Illness Anticipated Stigma Scale (CIASS) was developed to measure anticipated stigma (i.e., expectations of prejudice, stereotyping, and discrimination) among people living with chronic illnesses. The CIASS is a 12-item scale with three subscales differentiating among sources of anticipated stigma, including friends and family members, work colleagues, and healthcare workers. Results support the reliability, validity, and generalizability of the CIASS in two samples of people living with chronic illnesses. The CIASS was correlated with other stigma-related constructs as well as indicators of mental health, physical health, and health behaviors. The CIASS can help researchers gauge the degree to which people living with chronic illnesses anticipate stigma, better understand the processes by which anticipated stigma contributes to the health and behavior of people living with chronic illnesses, and compare the extent to which people living with different types of chronic illnesses anticipate stigma.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  • Acker, S. M. (2008). The doctor–patient relationship in the treatment of fibromyalgia. Dissertation abstracts international, 69, 4406.

  • Anderson, G. (2004). Chronic conditions: Making the case for ongoing care. Baltimore, MD: John Hopkins University.

    Google Scholar 

  • Beatty, J. E., & Joffee, R. (2006). An overlooked dimension of diversity: The career effects of chronic illness. Organizational Dynamics, 35, 182–195. doi:10.1016/j.orgdyn.2006.03.006.

    Article  Google Scholar 

  • Berger, B. E., Ferrans, C. E., & Lashley, F. R. (2001). Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Research in Nursing & Health, 24, 518–529. doi:10.1002/nur.10011.

    Article  CAS  Google Scholar 

  • Chan, F., McMahon, B. T., Cheing, G., Bezyak, J., & Rosenthal, D. A. (2005). Drivers of workplace discrimination against people with disabilities: The utility of attribution theory. Work: Journal of Prevention, Assessment & Rehabilitation, 25, 77–88.

    Google Scholar 

  • Chapple, A., Ziebland, S., & McPherson, A. (2004). Stigma, shame, and blame experienced by patients with lung cancer: Qualitative study. BMJ: British Medical Journal, 328, 1470–1470. doi:10.1136/bmj.38111.639734.7C.

    Article  PubMed  CAS  Google Scholar 

  • Conrad, S., Garrett, L. E., Cooksley, W. G. E., MacDonald, G. A., & Dunne, M. P. (2006). Living with chronic hepatitis C means ‘you just haven’t got a normal life any more.’. Chronic Illness, 2, 121–131. doi:10.1179/174592006X110996.

    PubMed  CAS  Google Scholar 

  • DeVellis, R. F. (2003). Scale development: Theory and applications. Thousand Oaks, CA: Sage Publications.

    Google Scholar 

  • Downey, G., & Feldman, S. I. (1996). Implications of rejection sensitivity for intimate relationships. Journal of Personality and Social Psychology, 70, 1327–1343. doi:10.1037/0022-3514.70.6.1327.

    Article  PubMed  CAS  Google Scholar 

  • Earnshaw, V. A., & Chaudoir, S. R. (2009). From conceptualizing to measuring HIV stigma: A review of HIV stigma mechanism measures. AIDS and Behavior, 13, 1160–1177. doi:10.1007/s10461-009-9593-3.

    Article  PubMed  Google Scholar 

  • Earnshaw, V. A., & Quinn, D. M. (2012). The impact of stigma in healthcare on people living with chronic illnesses. Journal of Health Psychology, 17, 157–168. doi:10.1177/1359105311414952.

    Article  PubMed  Google Scholar 

  • Fife, B. L., & Wright, E. R. (2000). The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health and Social Behavior, 41, 50–67. doi:10.2307/2676360.

    Article  PubMed  CAS  Google Scholar 

  • Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. New York, NY: Simon & Schuster.

    Google Scholar 

  • Green, G. (2009). The end of stigma? Changes in the social experience of long-term illness. UK: T & F Books.

    Google Scholar 

  • Hampel, P., Rudolph, H., Stachow, R., Petermann, F., & Laβ-Lentzsch, A. (2005). Coping among children and adolescents with chronic illness. Anxiety, Stress & Coping: An International Journal, 18, 145–155. doi:10.1080/10615800500134639.

    Article  Google Scholar 

  • Henry, J. D., von Hippel, C., & Shapiro, L. (2010). Stereotype threat contributes to social difficulties in people with schizophrenia. British Journal of Clinical Psychology, 49, 31–41. doi:10.1348/014466509X421963.

    Article  PubMed  Google Scholar 

  • Joachim, G., & Acorn, S. (2000). Living with chronic illness: The interface of stigma and normalization. Canadian Journal of Nursing Research, 32, 37–48.

    PubMed  CAS  Google Scholar 

  • Jöreskog, K. G. (2006). Multiple group models for ordinal variables. Available at http://www.ssicentral.com/lisrel/techdocs/Session10.pdf.

  • Katz, D. A., & McHorney, C. A. (2002). The relationship between insomnia and health-related quality of life in patients with chronic illness. The Journal of Family Practice, 51, 229–235.

    PubMed  Google Scholar 

  • Kessler, R. C., Mickelson, K. D., & Williams, D. R. (1999). The prevalence, distribution, and mental health correlates of perceived discrimination in the United States. Journal of Health and Social Behavior, 40, 208–230. doi:10.2307/2676349.

    Article  PubMed  CAS  Google Scholar 

  • Kleinman, A. (1988). The illness narratives: Suffering, healing, and the human condition. University of Michigan: Basic Books.

    Google Scholar 

  • Kline, R. B. (2005). Principles and practice of structural equation modeling. New York, NY: Guilford Press.

    Google Scholar 

  • Kurzban, R., & Leary, M. R. (2001). Evolutionary origins of stigmatization: The functions of social exclusion. Psychological Bulletin, 127, 187–208. doi:10.1037/0033-2909.127.2.187.

    Article  PubMed  CAS  Google Scholar 

  • Leventhal, H., Ethan, H., Horowitz, C., Leventhal, E., & Ozakinci, G. (2004). Living with chronic illness: A contextualized, self-regulation approach. In S. Sutton, A. Baum, & M. Johnston (Eds.), The SAGE handbook of health psychology. London: SAGE.

    Google Scholar 

  • Link, B. G. (1987). Understanding labeling effects in the area of mental disorders: An assessment of the effects of expectations of rejection. American Sociological Review, 52, 96–112. doi:10.2307/2095395.

    Article  Google Scholar 

  • Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385. doi:10.1146/annurev.soc.27.1.363.

    Article  Google Scholar 

  • Mendoza-Denton, R., Downey, G., Purdie, V. J., Davis, A., & Pietrzak, J. (2002). Sensitivity to status-based rejection: Implications for African American students’ college experience. Journal of Personality and Social Psychology, 83, 896–918. doi:10.1037/0022-3514.83.4.896.

    Article  PubMed  Google Scholar 

  • Meyer, I. H. (1995). Minority stress and mental health in gay men. Journal of Health and Social Behavior, 36, 38–56. doi:10.2307/2137286.

    Article  PubMed  CAS  Google Scholar 

  • Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: A conceptual framework and implications for action. Social Science Medicine, 57(1), 13. doi: 10.1016/S0277-9536(02)00304-0.

  • Pennebaker, J. W. (1982). The psychology of physical symptoms. New York: Springer.

    Book  Google Scholar 

  • Phelan, J. C., Link, B. G., & Dovidio, J. F. (2008). Stigma and prejudice: One animal or two? Social Science and Medicine, 67, 358–367. doi:10.1016/j.socscimed.2008.03.022.

    Article  PubMed  Google Scholar 

  • Pinel, E. C. (1999). Stigma consciousness: The psychological legacy of social stereotypes. Journal of Personality and Social Psychology, 76, 114–128. doi:10.1037/0022-3514.76.1.114.

    Article  PubMed  CAS  Google Scholar 

  • Pinel, E. C. (2002). Stigma consciousness in intergroup contexts: The power of conviction. Journal of Experimental Social Psychology, 38, 178–185. doi:10.1006/jesp.2001.1.1498.

    Article  Google Scholar 

  • Quinn, D. M., & Chaudoir, S. R. (2009). Living with a concealable stigmatized identity: The impact of anticipated stigma, centrality, salience, and cultural stigma on psychological distress and health. Journal of Personality and Social Psychology, 97, 634–651. doi:10.1037/a0015815.

    Article  PubMed  Google Scholar 

  • Quinn, D. M., & Earnshaw, V. A. (2011). Understanding concealable stigmatized identities: The role of identity in psychological, physical, and behavioral outcomes. Social Issues and Policy Review, 5, 160–190.

    Article  Google Scholar 

  • Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385–401. doi:10.1177/014662167700100306.

    Article  Google Scholar 

  • 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, 585–595. doi:10.1007/s11136-009-9475-1.

    Article  PubMed  Google Scholar 

  • Rogge, M. M., Greenwald, M., & Golden, A. (2004). Obesity, stigma, and civilized oppression. Advances in Nursing Science, 27, 301–315.

    PubMed  Google Scholar 

  • Sayles, J. N., Ryan, G. W., Silver, J. S., Sarkisian, C. A., & Cunningham, W. E. (2007). Experiences of social stigma and implications for healthcare among a diverse population of HIV positive adults. Journal of Urban Health, 84, 814–828. doi:10.1007/s11524-007-9220-4.

    Article  PubMed  Google Scholar 

  • Sontag, S. (1991). Illness as metaphor and AIDS and its metaphors. London: Penguin.

  • Spielberger, C., Vagg, P. R., Barker, L., Donham, G. W., & Westberry, L. G. (1980). The factor structure of the state-trait anxiety inventory. In I. G. Sarason & C. Spielberger (Eds.), Stress and anxiety (Vol. 7). Washington: Hemisphere.

    Google Scholar 

  • Stanton, A. L., Revenson, T. A., & Tennen, H. (2007). Health psychology: Psychological adjustment to chronic disease. Annual Review of Psychology, 58, 565–592. doi:10.1146/annurev.psych.58.110405.085615.

    Article  PubMed  Google Scholar 

  • Steward, W. T., Herek, G. M., Ramakrishna, J., Bharat, S., Chandy, S., Wrubel, J., et al. (2008). HIV-related stigma: Adapting a theoretical framework for use in India. Social Science and Medicine, 67, 1225–1235. doi:10.1016/j.socscimed.2008.05.032.

    Article  PubMed  Google Scholar 

  • Stutterheim, S. E., Pryor, J. B., Bos, A. E., Hoogendijk, R., Muris, P., & Schaalma, H. P. (2009). HIV-related stigma and psychological distress: The harmful effects of specific stigma manifestations in various social settings. AIDS, 23, 2353–2357. doi:10.1097.qad.0b013e3283320dce.

    Article  PubMed  Google Scholar 

  • Taft, T. H., Keefer, L., Artz, C., Bratten, J., & Jones, M. P. (2011). Perceptions of illness stigma in patients with inflammatory bowel disease and irritable bowel syndrome. Quality of Life Research, 20, 1391–1399. doi:10.1007/s11136-011-9883-x.

    Article  PubMed  Google Scholar 

  • Taft, T. H., Keefer, L., Leonhard, C., & Nealon-Woods, M. (2009). Impact of perceived stigma on inflammatory bowel disease patient outcomes. Inflammatory Bowel Disease, 15, 1224–1232. doi:10.1002/ibd.20864.

    Article  Google Scholar 

  • Thoits, P. A. (2010). Stress and health: Major findings and policy implications. Journal of Health and Social Behavior, 51(S), S41–S53. doi:10.1177/0022146510383499.

    Google Scholar 

  • Thorne, S., & Paterson, B. (1998). Shifting images of chronic illness. Journal of Nursing Scholarship, 30, 173–178. doi:10.1111/j.1547-5069.1998.tb01275.x.

    Article  CAS  Google Scholar 

  • van Brakel, W. H. (2006). Measuring health-related stigma—a literature review. Psychology, Health, & Medicine, 11, 307–334. doi:10.1080/13548500600595160.

    Article  Google Scholar 

  • van Rie, A., Sengupta, S., Pungrassami, P., Balthip, Q., Choonuan, S., Kasetjaroen, Y., et al. (2008). Measuring stigma associated with tuberculosis and HIV/AIDS in southern Thailand: Exploratory and confirmatory factor analyses of two new scales. Tropical Medicine & International Health, 13, 21–30. doi:10.1111/j.1365-3156.2007.01971.x.

    Article  Google Scholar 

  • West, M. D., Dye, A. N., & McMahon, B. T. (2006). Epilepsy and workplace discrimination: Population characteristics and trends. Epilepsy & Behavior, 9, 101–105. doi:10.1016/j.yebeh.2006.03.011.

    Article  Google Scholar 

  • Wu, S. Y., & Green, A. (2000). Projection of chronic illness prevalence and cost inflation. Santa Monica, CA: RAND Health.

    Google Scholar 

  • Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52, 30–41. doi:10.1207/s15327752jpa5201_2.

    Article  Google Scholar 

  • Zumbo, B. D., Gadermann, A. M., & Zeisser, C. (2007). Ordinal versions of coefficients alpha and theta for Likert rating scales. Journal of Modern Applied Statistical Methods, 6, 21–29.

    Google Scholar 

Download references

Acknowledgments

The project described was supported by Award Numbers T32MH074387 and T32MH020031 from the National Institute of Mental Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Mental Health or the National Institutes of Health. The work was further supported by a doctoral dissertation fellowship award from the University of Connecticut to Valerie A. Earnshaw, whose dissertation this work is based on. We thank David Kenny, Bruno Zumbo, and Anne Gadermann for their assistance with statistical analyses.

Author information

Authors and Affiliations

  1. Center for Interdisciplinary Research on AIDS, Yale University, 135 College Street, Suite 200, New Haven, CT, 06510, USA

    Valerie A. Earnshaw

  2. Department of Psychology, University of Connecticut, Storrs, CT, USA

    Diane M. Quinn, Seth C. Kalichman & Crystal L. Park

Authors
  1. Valerie A. Earnshaw
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Diane M. Quinn
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Seth C. Kalichman
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Crystal L. Park
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Valerie A. Earnshaw.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Earnshaw, V.A., Quinn, D.M., Kalichman, S.C. et al. Development and psychometric evaluation of the Chronic Illness Anticipated Stigma Scale. J Behav Med 36, 270–282 (2013). https://doi.org/10.1007/s10865-012-9422-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10865-012-9422-4

Keywords

Search

Navigation