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Gepubliceerd in: Quality of Life Research 9/2011

01-11-2011

Perceptions of illness stigma in patients with inflammatory bowel disease and irritable bowel syndrome

Auteurs: Tiffany H. Taft, Laurie Keefer, Caroline Artz, Jason Bratten, Michael P. Jones

Gepubliceerd in: Quality of Life Research | Uitgave 9/2011

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Abstract

Purpose

To compare the experiences of perceived stigma (PS) in both patients with irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) and examine its relationship to patient-reported outcomes in both patient populations.

Methods

IBD and IBS patients were recruited from an outpatient gastroenterology clinic and online via support message boards and classifieds. Participants completed a series of questionnaires to measure the perception of illness stigma, psychological functioning, and clinical and demographic data.

Results

Two hundred and sixty-nine IBS and 227 IBD patients participated. IBS patients were more likely to report high levels of perceived stigma across a wider range of sources, with the largest difference being for health care providers. Twenty-seven percent of IBS patients reported moderate to high levels of perceived stigma, compared with 8% of IBD. While perception of stigma was correlated with poorer patient-reported outcomes in both patient groups, correlations were larger for IBD compared with IBS.

Conclusions

This study demonstrates that both IBD and IBS patients perceive stigma about their illness. As demonstrated by increased depression and anxiety, decreased self-esteem and self-efficacy, and lower quality of life in both patient groups, PS was shown to have a negative impact on clinical outcomes.
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Literatuur
1.
go back to reference Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 20(5), 363–385. CrossRef Link, B. G., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 20(5), 363–385. CrossRef
2.
go back to reference Weiss, M. G., Ramakrishna, J., & Somma, D. (2006). Health-related stigma: rethinking concepts and interventions. Psychology, Health, Medicine, 11(3), 277–287. CrossRef Weiss, M. G., Ramakrishna, J., & Somma, D. (2006). Health-related stigma: rethinking concepts and interventions. Psychology, Health, Medicine, 11(3), 277–287. CrossRef
3.
go back to reference Gary, F. A. (2005). Stigma: Barrier to mental health care among ethnic minorities. Issues Mental Health Nursing, 26(10), 979–999. CrossRef Gary, F. A. (2005). Stigma: Barrier to mental health care among ethnic minorities. Issues Mental Health Nursing, 26(10), 979–999. CrossRef
4.
go back to reference Ginsburg, I. H., & Link, B. G. (1993). Psychosocial consequences of rejection and stigma feelings in psoriasis patients. International Journal of Dermatology, 32(8), 587–591. PubMedCrossRef Ginsburg, I. H., & Link, B. G. (1993). Psychosocial consequences of rejection and stigma feelings in psoriasis patients. International Journal of Dermatology, 32(8), 587–591. PubMedCrossRef
5.
go back to reference Rintamaki, L. S., Davis, T. C., Skripkauskas, S., Bennett, C. L., & Wolf, M. S. (2006). Social stigma concerns and HIV medication adherence. AIDS Patient Care STDS, 20(5), 359–368. PubMedCrossRef Rintamaki, L. S., Davis, T. C., Skripkauskas, S., Bennett, C. L., & Wolf, M. S. (2006). Social stigma concerns and HIV medication adherence. AIDS Patient Care STDS, 20(5), 359–368. PubMedCrossRef
6.
go back to reference Sirey, J. A., Bruce, M. L., Alexopoulos, G. S., Perlick, D. A., Friedman, S. J., & Meyers, B. S. (2001). Stigma as a barrier to recovery: Perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psychiatric Services, 52(12), 1615–1620. PubMedCrossRef Sirey, J. A., Bruce, M. L., Alexopoulos, G. S., Perlick, D. A., Friedman, S. J., & Meyers, B. S. (2001). Stigma as a barrier to recovery: Perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psychiatric Services, 52(12), 1615–1620. PubMedCrossRef
7.
go back to reference Kane, S. (2007). Just a spoonful of sugar helps the medicine go down… If only it was that simple! nonadherence in inflammatory bowel disease. American Journal of Gastroenterology, 102(7), 1427–1428. PubMedCrossRef Kane, S. (2007). Just a spoonful of sugar helps the medicine go down… If only it was that simple! nonadherence in inflammatory bowel disease. American Journal of Gastroenterology, 102(7), 1427–1428. PubMedCrossRef
8.
go back to reference Chesney, M., & Smith, A. (1999). Critical delays in HIV testing and care: The potential role of stigma. American Behavioral Scientist, 42, 1162–1174. CrossRef Chesney, M., & Smith, A. (1999). Critical delays in HIV testing and care: The potential role of stigma. American Behavioral Scientist, 42, 1162–1174. CrossRef
9.
go back to reference Heijnders, M., & Van Der Meij, S. (2006). The fight against stigma: an overview of stigma-reduction strategies and interventions. Psychology Health and Medicine, 11(3), 353–363. CrossRef Heijnders, M., & Van Der Meij, S. (2006). The fight against stigma: an overview of stigma-reduction strategies and interventions. Psychology Health and Medicine, 11(3), 353–363. CrossRef
10.
go back to reference Millen, N., & Walker, C. (2001). Overcoming the stigma of chronic illness: Strategies for normalization of a ‘spoiled identity’. Health Sociology Review, 10(2), 89–97. CrossRef Millen, N., & Walker, C. (2001). Overcoming the stigma of chronic illness: Strategies for normalization of a ‘spoiled identity’. Health Sociology Review, 10(2), 89–97. CrossRef
11.
go back to reference Chapple, A., Ziebland, S., & McPherson, A. (2004). Stigma, shame, and blame experienced by patients with lung cancer: Qualitative study. BMJ, 328(7454), 1470. PubMedCrossRef Chapple, A., Ziebland, S., & McPherson, A. (2004). Stigma, shame, and blame experienced by patients with lung cancer: Qualitative study. BMJ, 328(7454), 1470. PubMedCrossRef
12.
13.
go back to reference Asbring, P., & Narvanen, A. L. (2002). Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research, 12(2), 148–160. PubMed Asbring, P., & Narvanen, A. L. (2002). Women’s experiences of stigma in relation to chronic fatigue syndrome and fibromyalgia. Qualitative Health Research, 12(2), 148–160. PubMed
14.
go back to reference Looper, K. J., & Kirmayer, L. J. (2004). Perceived stigma in functional somatic syndromes and comparable medical conditions. Journal of Psychosomatic Research, 57(4), 373–378. PubMed Looper, K. J., & Kirmayer, L. J. (2004). Perceived stigma in functional somatic syndromes and comparable medical conditions. Journal of Psychosomatic Research, 57(4), 373–378. PubMed
15.
go back to reference Jones, E., Farina, A., Hastorf, A., Markus, H., Miller, D., & Scott, R. (1984). Social stigma: The psychology of marked relationships. New York: Freeman. Jones, E., Farina, A., Hastorf, A., Markus, H., Miller, D., & Scott, R. (1984). Social stigma: The psychology of marked relationships. New York: Freeman.
16.
go back to reference Blanchard, E. B., Scharff, L., Schwarz, S. P., Suls, J. M., & Barlow, D. H. (1990). The role of anxiety and depression in the irritable bowel syndrome. Behavior Research and Therapy, 28(5), 401–405. CrossRef Blanchard, E. B., Scharff, L., Schwarz, S. P., Suls, J. M., & Barlow, D. H. (1990). The role of anxiety and depression in the irritable bowel syndrome. Behavior Research and Therapy, 28(5), 401–405. CrossRef
17.
go back to reference Jones, M. P., Keefer, L., Bratten, J., Taft, T. H., Crowell, M. D., Levy, R., et al. (2009). Development and initial validation of a measure of perceived stigma in irritable bowel syndrome. Psychology Health and Medicine, 14(3), 367–374. CrossRef Jones, M. P., Keefer, L., Bratten, J., Taft, T. H., Crowell, M. D., Levy, R., et al. (2009). Development and initial validation of a measure of perceived stigma in irritable bowel syndrome. Psychology Health and Medicine, 14(3), 367–374. CrossRef
18.
go back to reference Cuntz, U., Welt, J., Ruppert, E., & Zillessen, E. (1999). Determination of subjective burden from chronic inflammatory bowel disease and its psychosocial consequences. Results from a study of 200 patients. Psychotherapie, Psychosomatik, Medizinishce, Psychologie, 49(12), 494–500. Cuntz, U., Welt, J., Ruppert, E., & Zillessen, E. (1999). Determination of subjective burden from chronic inflammatory bowel disease and its psychosocial consequences. Results from a study of 200 patients. Psychotherapie, Psychosomatik, Medizinishce, Psychologie, 49(12), 494–500.
19.
go back to reference Derogatis, L. R., & Melisaratos, N. (1983). The brief symptom inventory: An introductory report. Psychological Medicine, 13(3), 595–605. PubMedCrossRef Derogatis, L. R., & Melisaratos, N. (1983). The brief symptom inventory: An introductory report. Psychological Medicine, 13(3), 595–605. PubMedCrossRef
20.
go back to reference Taft, T. H., Keefer, L., Leonhard, C., & Nealon-Woods, M. (2009). Impact of perceived stigma on inflammatory bowel disease patient outcomes. Inflammatory Bowel Diseases, 15(8), 1224–1232. PubMedCrossRef Taft, T. H., Keefer, L., Leonhard, C., & Nealon-Woods, M. (2009). Impact of perceived stigma on inflammatory bowel disease patient outcomes. Inflammatory Bowel Diseases, 15(8), 1224–1232. PubMedCrossRef
21.
go back to reference Lysaker, P. H., Roe, D., & Yanos, P. T. (2007). Toward understanding the insight paradox: Internalized stigma moderates the association between insight and social functioning, hope, and self-esteem among people with schizophrenia spectrum disorders. Schizophrenia Bulletin, 33, 192–199. PubMedCrossRef Lysaker, P. H., Roe, D., & Yanos, P. T. (2007). Toward understanding the insight paradox: Internalized stigma moderates the association between insight and social functioning, hope, and self-esteem among people with schizophrenia spectrum disorders. Schizophrenia Bulletin, 33, 192–199. PubMedCrossRef
22.
go back to reference Derogatis, L. R., & Melisaratos, N. (1983). The brief symptom inventory: An introductory report. Psychological Medicine, 13(3), 595–605. PubMedCrossRef Derogatis, L. R., & Melisaratos, N. (1983). The brief symptom inventory: An introductory report. Psychological Medicine, 13(3), 595–605. PubMedCrossRef
23.
go back to reference Derogatis, L. R. (2000). BSI-18: Administration, scoring, and procedures manual. Minneapolis, MN: National Computer Systems. Derogatis, L. R. (2000). BSI-18: Administration, scoring, and procedures manual. Minneapolis, MN: National Computer Systems.
24.
go back to reference Rosenberg, M. (1965). Society and the adolescent self-image. Princeton, NJ: Princeton University Press. Rosenberg, M. (1965). Society and the adolescent self-image. Princeton, NJ: Princeton University Press.
25.
go back to reference Schwarzer, R., & Jerusalemm, M. (1995). Generalized self-efficacy scale. In J. Weinman, S. Wright, & M. Johnston (Eds.), Measures in health psychology: A user’s portfolio. Causal and control beliefs (pp. 35–37). Windsor, UK: NFER-NELSON. Schwarzer, R., & Jerusalemm, M. (1995). Generalized self-efficacy scale. In J. Weinman, S. Wright, & M. Johnston (Eds.), Measures in health psychology: A user’s portfolio. Causal and control beliefs (pp. 35–37). Windsor, UK: NFER-NELSON.
26.
go back to reference Ware, J. E., Kosinski, M., Turner-Bowker, D. M., & Gandek, B. (2002). Version 2 of the SF-12 health survey. Lincoln, RI: Quality Metric Incorporated. Ware, J. E., Kosinski, M., Turner-Bowker, D. M., & Gandek, B. (2002). Version 2 of the SF-12 health survey. Lincoln, RI: Quality Metric Incorporated.
27.
go back to reference Meyers, L. S., Gamst, G., & Guarino, A. J. (2006). Applied multivariate research: Design and interpretation. London, UK: Sage Publications, Inc. Meyers, L. S., Gamst, G., & Guarino, A. J. (2006). Applied multivariate research: Design and interpretation. London, UK: Sage Publications, Inc.
28.
go back to reference Jones, M. P., Wessinger, S., & Crowell, M. D. (2006). Coping strategies and interpersonal support in patients with irritable bowel syndrome and inflammatory bowel disease. Clinical Gastroenterology and Hepatology, 4(4), 474–481. PubMedCrossRef Jones, M. P., Wessinger, S., & Crowell, M. D. (2006). Coping strategies and interpersonal support in patients with irritable bowel syndrome and inflammatory bowel disease. Clinical Gastroenterology and Hepatology, 4(4), 474–481. PubMedCrossRef
29.
go back to reference Pace, F., Molteni, P., Bollani, S., Sarzi-Puttini, P., Stockbrugger, R., Bianchi Porro, G., et al. (2003). Inflammatory bowel disease versus irritable bowel syndrome: A hospital-based, case-control study of disease impact on quality of life. Scandinavian Journal of Gastroenterology, 38(10), 1031–1038. PubMedCrossRef Pace, F., Molteni, P., Bollani, S., Sarzi-Puttini, P., Stockbrugger, R., Bianchi Porro, G., et al. (2003). Inflammatory bowel disease versus irritable bowel syndrome: A hospital-based, case-control study of disease impact on quality of life. Scandinavian Journal of Gastroenterology, 38(10), 1031–1038. PubMedCrossRef
30.
go back to reference Kovacs, Z., & Kovacs, F. (2007). Depressive and anxiety symptoms, dysfunctional attitudes and social aspects in irritable bowel syndrome and inflammatory bowel disease. International Journal of Psychiatry Medicine, 37(3), 245–255. CrossRef Kovacs, Z., & Kovacs, F. (2007). Depressive and anxiety symptoms, dysfunctional attitudes and social aspects in irritable bowel syndrome and inflammatory bowel disease. International Journal of Psychiatry Medicine, 37(3), 245–255. CrossRef
31.
go back to reference Longstreth, G. F., & Burchette, R. J. (2003). Family practitioners’ attitudes and knowledge about irritable bowel syndrome: Effect of a trial of physician education. Family Practice, 20(6), 670–674. PubMedCrossRef Longstreth, G. F., & Burchette, R. J. (2003). Family practitioners’ attitudes and knowledge about irritable bowel syndrome: Effect of a trial of physician education. Family Practice, 20(6), 670–674. PubMedCrossRef
32.
go back to reference Sainsbury, A., & Heatley, R. V. (2005). Review article: Psychosocial factors in the quality of life of patients with inflammatory bowel disease. Alimentary Pharmacology & Therapeutics, 21(5), 499–508. CrossRef Sainsbury, A., & Heatley, R. V. (2005). Review article: Psychosocial factors in the quality of life of patients with inflammatory bowel disease. Alimentary Pharmacology & Therapeutics, 21(5), 499–508. CrossRef
33.
go back to reference Maunder, R., Toner, B., de Rooy, E., & Moskovits, D. (1989). Influences of sex and disease on illness-related concerns in inflammatory bowel disease. Canadian Journal of Gastroenterology, 13(9), 728–732. Maunder, R., Toner, B., de Rooy, E., & Moskovits, D. (1989). Influences of sex and disease on illness-related concerns in inflammatory bowel disease. Canadian Journal of Gastroenterology, 13(9), 728–732.
34.
go back to reference Schwenk, T. L., Marquez, J. T., Lefever, R. D., & Cohen, M. (1989). Physician and patient determinants of difficult physician-patient relationships. Journal of Family Practice, 28(1), 59–63. PubMed Schwenk, T. L., Marquez, J. T., Lefever, R. D., & Cohen, M. (1989). Physician and patient determinants of difficult physician-patient relationships. Journal of Family Practice, 28(1), 59–63. PubMed
35.
go back to reference Sewitch, M. J., Abrahamowicz, M., Bitton, A., Daly, D., Wild, G. E., Cohen, A., et al. (2002). Psychosocial correlates of patient-physician discordance in inflammatory bowel disease. American Journal of Gastroenterology, 97(9), 2174–2183. PubMedCrossRef Sewitch, M. J., Abrahamowicz, M., Bitton, A., Daly, D., Wild, G. E., Cohen, A., et al. (2002). Psychosocial correlates of patient-physician discordance in inflammatory bowel disease. American Journal of Gastroenterology, 97(9), 2174–2183. PubMedCrossRef
36.
go back to reference Stanton, A. L., Revenson, T. A., & Tennen, H. (2007). Health psychology: Psychological adjustment to chronic disease. Annual Review of Psychology, 58, 565–592. PubMedCrossRef Stanton, A. L., Revenson, T. A., & Tennen, H. (2007). Health psychology: Psychological adjustment to chronic disease. Annual Review of Psychology, 58, 565–592. PubMedCrossRef
37.
go back to reference Link, B. G., Struening, E. L., Neese-Todd, S., Asmussen, S., & Phelan, J. C. (2001). Stigma as a barrier to recovery: The consequences of stigma for the self-esteem of people with mental illnesses. Psychiatric Services, 52(12), 1621–1626. PubMedCrossRef Link, B. G., Struening, E. L., Neese-Todd, S., Asmussen, S., & Phelan, J. C. (2001). Stigma as a barrier to recovery: The consequences of stigma for the self-esteem of people with mental illnesses. Psychiatric Services, 52(12), 1621–1626. PubMedCrossRef
38.
go back to reference Crocker, J., & Major, B. (1989). Social stigma and self-esteem: The self-protective properties of stigma. Psychological Review, 96(4), 608–630. CrossRef Crocker, J., & Major, B. (1989). Social stigma and self-esteem: The self-protective properties of stigma. Psychological Review, 96(4), 608–630. CrossRef
39.
go back to reference Voth, J., & Sirois, F. M. (2009). The role of self-blame and responsibility in adjustment to inflammatory bowel disease. Rehabilitation Psychology, 54(1), 99–108. PubMedCrossRef Voth, J., & Sirois, F. M. (2009). The role of self-blame and responsibility in adjustment to inflammatory bowel disease. Rehabilitation Psychology, 54(1), 99–108. PubMedCrossRef
40.
go back to reference Graff, L. A., Walker, J. R., Clara, I., Lix, L., Miller, N., Rogala, L., et al. (2009). Stress coping, distress, and health perceptions in inflammatory bowel disease and community controls. American Journal of Gastroenterology, 104(12), 2959–2969. PubMedCrossRef Graff, L. A., Walker, J. R., Clara, I., Lix, L., Miller, N., Rogala, L., et al. (2009). Stress coping, distress, and health perceptions in inflammatory bowel disease and community controls. American Journal of Gastroenterology, 104(12), 2959–2969. PubMedCrossRef
Metagegevens
Titel
Perceptions of illness stigma in patients with inflammatory bowel disease and irritable bowel syndrome
Auteurs
Tiffany H. Taft
Laurie Keefer
Caroline Artz
Jason Bratten
Michael P. Jones
Publicatiedatum
01-11-2011
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 9/2011
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-9883-x

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