Skip to main content
Top
Published in: International Journal of Behavioral Medicine 3/2013

01-09-2013

The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use Across Neurological Conditions

Authors: Yamile Molina, Seung W. Choi, David Cella, Deepa Rao

Published in: International Journal of Behavioral Medicine | Issue 3/2013

Login to get access

Abstract

Background

Although the impact of stigma has been highlighted for epileptic populations, the experiences of people living with other neurological conditions have been less studied.

Purpose

In order to promote research on stigma among people with neurological conditions, we sought to develop and psychometrically validate an eight-item questionnaire measuring internalised and enacted stigma experienced by people with epilepsy, multiple sclerosis (MS), Parkinson’s disease (PD), stroke and amyotrophic lateral sclerosis (ALS).

Method

We used item response theory methodologies to select items and field tested our items with 587 participants from eight academic medical centres across the USA.

Results

We conducted exploratory and confirmatory factor analysis as well as examined the scale’s reliability and validity. In addition, we conducted an analysis of variance test to examine mean total score differences across the five neurological conditions. Data from people across conditions revealed that the shortened instrument conformed to an essentially unidimensional model of multifaceted stigma as a one-factor questionnaire with correlated residuals on a pair of items that distinctly measured internalised stigma.

Conclusion

Preliminary evidence suggests that the Stigma Scale for Chronic Illness 8-item version fits a unidimensional model, which assesses enacted and internalised stigma, and has adequate internal consistency/reliability and validity in relation to psychological distress and patient performance. Our results suggest fairly low stigma for neurological populations. In addition, our results suggest that stigma may be more severe for patients with ALS relative to those with MS and PD. In the future, the SSCI-8 scale could be used practically in clinic settings to examine stigma without the patient burden associated with lengthier scales.
Literature
1.
go back to reference Jenkinson C, Fitzpatrick R, Swash M, Peto V, ALS-HPS Steering Group. The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe. J Neurol. 2000;415:835–40.CrossRef Jenkinson C, Fitzpatrick R, Swash M, Peto V, ALS-HPS Steering Group. The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe. J Neurol. 2000;415:835–40.CrossRef
2.
go back to reference Perez L, Huang J, Jansky L, Nowindki C, Victorson D, Peterman A, Cella D. Using focus groups to inform the Neuro-QOL measurement tool: exploring patient-centered, health-related quality of life concepts across neurological conditions. J Neurosci Nurs. 2007;39:342–53.PubMedCrossRef Perez L, Huang J, Jansky L, Nowindki C, Victorson D, Peterman A, Cella D. Using focus groups to inform the Neuro-QOL measurement tool: exploring patient-centered, health-related quality of life concepts across neurological conditions. J Neurosci Nurs. 2007;39:342–53.PubMedCrossRef
3.
go back to reference Dallmeijer AJ, de Groot V, Roorda LD, Schepers VPM, Lindeman E, van den Berg LH, Beelen A, Dekker J, Fupro Study Group. Cross-diagnostic validity of the SF-36 physical functioning scale in patients with stroke, multiple sclerosis, and amyotrophic lateral sclerosis: a study using Rasch analysis. J Rehab Med. 2007;39:163–9.CrossRef Dallmeijer AJ, de Groot V, Roorda LD, Schepers VPM, Lindeman E, van den Berg LH, Beelen A, Dekker J, Fupro Study Group. Cross-diagnostic validity of the SF-36 physical functioning scale in patients with stroke, multiple sclerosis, and amyotrophic lateral sclerosis: a study using Rasch analysis. J Rehab Med. 2007;39:163–9.CrossRef
4.
go back to reference Pugh MJV, Copeland LA, Zeber JE, Cramer JA, Cavazos JE, Kazis LE. The impact of epilepsy on health status among younger and older adults. Epilepsia. 2005;46:1820–7.PubMedCrossRef Pugh MJV, Copeland LA, Zeber JE, Cramer JA, Cavazos JE, Kazis LE. The impact of epilepsy on health status among younger and older adults. Epilepsia. 2005;46:1820–7.PubMedCrossRef
5.
go back to reference Heilman KM, Valenstein E, editors. Clinical neuropsychology. New York: Oxford University Press; 2004. Heilman KM, Valenstein E, editors. Clinical neuropsychology. New York: Oxford University Press; 2004.
6.
go back to reference Rasquin SMC, Lodder J, Ponds RWHM, Winkens I, Jolles J, Verhey FRJ. Cognitive functioning after stroke: a one-year follow up study. Dementia Ger Cog Disor. 2004;18:138–44.CrossRef Rasquin SMC, Lodder J, Ponds RWHM, Winkens I, Jolles J, Verhey FRJ. Cognitive functioning after stroke: a one-year follow up study. Dementia Ger Cog Disor. 2004;18:138–44.CrossRef
7.
go back to reference Antonak RF, Livneh H. A review of research on psychosocial adjustment to impairment among persons with epilepsy. J Epilepsy. 1992;5:194–205.CrossRef Antonak RF, Livneh H. A review of research on psychosocial adjustment to impairment among persons with epilepsy. J Epilepsy. 1992;5:194–205.CrossRef
8.
go back to reference Joachim G, Acorn S. Stigma of visible and invisible chronic conditions. J Adv Nurs. 2000;32:243–8.PubMedCrossRef Joachim G, Acorn S. Stigma of visible and invisible chronic conditions. J Adv Nurs. 2000;32:243–8.PubMedCrossRef
9.
go back to reference Goffman E. Stigma: notes on the management of spoiled identity. New York: Simon and Schuster; 1963. Goffman E. Stigma: notes on the management of spoiled identity. New York: Simon and Schuster; 1963.
10.
go back to reference Harden CL, Kossoy A, Vera S, Nikolov B. Reaction to epilepsy in the workplace. Epilepsia. 2004;45:1134–40.PubMedCrossRef Harden CL, Kossoy A, Vera S, Nikolov B. Reaction to epilepsy in the workplace. Epilepsia. 2004;45:1134–40.PubMedCrossRef
11.
go back to reference Hermann B, Jacoby A. The psychosocial impact of epilepsy in adults. Epilepsy Behav. 2004;15:S11–6.CrossRef Hermann B, Jacoby A. The psychosocial impact of epilepsy in adults. Epilepsy Behav. 2004;15:S11–6.CrossRef
12.
go back to reference Hill M. Overcoming the stigma of epilepsy. Neurol Asia. 2010;15:S21–4. Hill M. Overcoming the stigma of epilepsy. Neurol Asia. 2010;15:S21–4.
13.
go back to reference McLaughlin DP, Pachana NA, Mcfarland K. Stigma, seizure frequency and quality of life: the impact of epilepsy in late adulthood. Seizure. 2007;17:281–7.PubMedCrossRef McLaughlin DP, Pachana NA, Mcfarland K. Stigma, seizure frequency and quality of life: the impact of epilepsy in late adulthood. Seizure. 2007;17:281–7.PubMedCrossRef
14.
go back to reference Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol. 2005;4:171–8.PubMed Jacoby A, Snape D, Baker GA. Epilepsy and social identity: the stigma of a chronic neurological disorder. Lancet Neurol. 2005;4:171–8.PubMed
15.
go back to reference Taylor J, Baker G, Jacoby A. Levels of epilepsy stigma in an incident population and associated factors. Epilepsy Behav. 2011;21:255–60.PubMedCrossRef Taylor J, Baker G, Jacoby A. Levels of epilepsy stigma in an incident population and associated factors. Epilepsy Behav. 2011;21:255–60.PubMedCrossRef
16.
go back to reference Moore S, Knowles S. Beliefs and knowledge about Parkinson’s disease. E-J App Psychol Clin Soc Issues. 2006;2:15–21.CrossRef Moore S, Knowles S. Beliefs and knowledge about Parkinson’s disease. E-J App Psychol Clin Soc Issues. 2006;2:15–21.CrossRef
17.
go back to reference Manzo JF. On the sociology and social orgnaization of stigma: some ethnomethodological insights. Hum Stud. 2004;27:401–16.CrossRef Manzo JF. On the sociology and social orgnaization of stigma: some ethnomethodological insights. Hum Stud. 2004;27:401–16.CrossRef
18.
go back to reference McLaughlin ME, Bell MP, Stringer DY. Stigma and acceptance of persons with disabilites: understudied aspects of work diversity. Group Org Manag. 2004;29:302–33.CrossRef McLaughlin ME, Bell MP, Stringer DY. Stigma and acceptance of persons with disabilites: understudied aspects of work diversity. Group Org Manag. 2004;29:302–33.CrossRef
19.
go back to reference Kumari P, Ram D, Nizamie SH, Goyal N. Stigma and quality of life in individuals with epilepsy: a preliminary report. Epilepsy Behav. 2009;15:358–61.PubMedCrossRef Kumari P, Ram D, Nizamie SH, Goyal N. Stigma and quality of life in individuals with epilepsy: a preliminary report. Epilepsy Behav. 2009;15:358–61.PubMedCrossRef
20.
go back to reference Suurmeijer TPBM, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy. Epilepsia. 2001;42:1160–8.PubMedCrossRef Suurmeijer TPBM, Reuvekamp MF, Aldenkamp BP. Social functioning, psychological functioning, and quality of life in epilepsy. Epilepsia. 2001;42:1160–8.PubMedCrossRef
21.
go back to reference Ye SY. The lived experience of struggling against illness for patients with amyotrophic lateral sclerosis. J Kor Acad Nurs. 2008;38:802–12.CrossRef Ye SY. The lived experience of struggling against illness for patients with amyotrophic lateral sclerosis. J Kor Acad Nurs. 2008;38:802–12.CrossRef
22.
go back to reference Corrigan P, Penn DL. Lessons from social psychology on discrediting psychiatric stigma. Am Psychol. 1999;54:756–76.CrossRef Corrigan P, Penn DL. Lessons from social psychology on discrediting psychiatric stigma. Am Psychol. 1999;54:756–76.CrossRef
23.
go back to reference Corrigan P, Watson A. The paradox of self-stigma and mental illness. Clin Psychol Sci Pract. 2002;9:35–53.CrossRef Corrigan P, Watson A. The paradox of self-stigma and mental illness. Clin Psychol Sci Pract. 2002;9:35–53.CrossRef
24.
go back to reference Corrigan P, Watson A, Barr L. The self-stigma of mental illness: implications for self-esteem and self-efficacy. J Soc Clin Psychol. 2006;25:875–84.CrossRef Corrigan P, Watson A, Barr L. The self-stigma of mental illness: implications for self-esteem and self-efficacy. J Soc Clin Psychol. 2006;25:875–84.CrossRef
25.
go back to reference Fung KM, Tsang HW, Corrigan PW. Self-stigma of people with schizophrenia as a predictor of their adherence to psychosocial treatment. Psych Rehab J. 2008;32:95–104.CrossRef Fung KM, Tsang HW, Corrigan PW. Self-stigma of people with schizophrenia as a predictor of their adherence to psychosocial treatment. Psych Rehab J. 2008;32:95–104.CrossRef
26.
go back to reference Rusch N, Corrigan PW, Wassel A, Micahels P, Larson JE, Olschewski M, Wilkniss S, Batia K. Self-stigma, group identification, perceived legitimacy of discrimination and mental health service use. Brit J Psych. 2009;195:551–2.CrossRef Rusch N, Corrigan PW, Wassel A, Micahels P, Larson JE, Olschewski M, Wilkniss S, Batia K. Self-stigma, group identification, perceived legitimacy of discrimination and mental health service use. Brit J Psych. 2009;195:551–2.CrossRef
27.
go back to reference Rusch N, Holzer A, Hermann C, Schramm E, Jacob GA, Bohus M, Lieb K, Corrigan PW. Self stigma in women with borderline personality disorder and women with social phobia. J Nerv Ment Dis. 2006;194:766–73.PubMedCrossRef Rusch N, Holzer A, Hermann C, Schramm E, Jacob GA, Bohus M, Lieb K, Corrigan PW. Self stigma in women with borderline personality disorder and women with social phobia. J Nerv Ment Dis. 2006;194:766–73.PubMedCrossRef
28.
go back to reference Watson AC, Corrigan PW, Larson JE, Sells M. Self-stigma in people with mental illness. Schizophr Bull. 2007;33:1312–8.PubMedCrossRef Watson AC, Corrigan PW, Larson JE, Sells M. Self-stigma in people with mental illness. Schizophr Bull. 2007;33:1312–8.PubMedCrossRef
29.
go back to reference Link B. Understanding labeling effects in the area of mental disorders: an assessment of the effects of expectations of rejection. Am Sociol Rev. 1987;52:96–112.CrossRef Link B. Understanding labeling effects in the area of mental disorders: an assessment of the effects of expectations of rejection. Am Sociol Rev. 1987;52:96–112.CrossRef
30.
go back to reference Pachankis JE. The psychological implications of concealing a stigma: a cognitive-affective-behavioral model. Psych Bull. 2007;133:328–45.CrossRef Pachankis JE. The psychological implications of concealing a stigma: a cognitive-affective-behavioral model. Psych Bull. 2007;133:328–45.CrossRef
31.
32.
33.
go back to reference Looper KJ, Kirmayer LJ. Perceived stigma in functional somatic syndromes and comparable medical conditions. J Psychosom Res. 2004;57:373–8.PubMed Looper KJ, Kirmayer LJ. Perceived stigma in functional somatic syndromes and comparable medical conditions. J Psychosom Res. 2004;57:373–8.PubMed
34.
go back to reference Suzkukamo Y, Ohbu S, Kondo T, Kohmoto J, Fukuhara S. Psychological adjustment has a greater effect on health-related quality of life than on severity of disease in Parkinson’s disease. Move Disord. 2006;21:761–6.CrossRef Suzkukamo Y, Ohbu S, Kondo T, Kohmoto J, Fukuhara S. Psychological adjustment has a greater effect on health-related quality of life than on severity of disease in Parkinson’s disease. Move Disord. 2006;21:761–6.CrossRef
35.
go back to reference Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Ed Prev. 2003;151:49–69.CrossRef Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned? AIDS Ed Prev. 2003;151:49–69.CrossRef
36.
go back to reference Rao D, Andrasik M, Acharya X, Simoni J. Internalized stigma among African Americans living with HIV: preliminary scale development based on qualitative data. In: Liamputtong P, editor. Stigma, discrimination, and living with HIV/AIDS: a cross-cultural perspective. Springer; 2012 (in press). Rao D, Andrasik M, Acharya X, Simoni J. Internalized stigma among African Americans living with HIV: preliminary scale development based on qualitative data. In: Liamputtong P, editor. Stigma, discrimination, and living with HIV/AIDS: a cross-cultural perspective. Springer; 2012 (in press).
37.
go back to reference Rao D, Choi S, Victorson D, Bode R, Heinemann A, Peterman A, Cella D. Measuring stigma across neurological conditions: the development of the Stigma Scale for Chronic Illness (SSCI). Qual Life Res. 2009;18:585–95.PubMedCrossRef Rao D, Choi S, Victorson D, Bode R, Heinemann A, Peterman A, Cella D. Measuring stigma across neurological conditions: the development of the Stigma Scale for Chronic Illness (SSCI). Qual Life Res. 2009;18:585–95.PubMedCrossRef
38.
go back to reference Rao D, Feldman B, Fredericksen R, Crane P, Simoni J, Kitahata M, Crane H. A structural equation model of HIV-related stigma, depressive symptoms, and medication adherence. AIDS Behav. 2011. doi:10.1007/s10461-011-9915-0. Rao D, Feldman B, Fredericksen R, Crane P, Simoni J, Kitahata M, Crane H. A structural equation model of HIV-related stigma, depressive symptoms, and medication adherence. AIDS Behav. 2011. doi:10.​1007/​s10461-011-9915-0.
39.
go back to reference Cella D, Gershon R, Lai J, Choi S. The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment. Qual Life Res. 2007;16(Supplement 1):133–41.PubMedCrossRef Cella D, Gershon R, Lai J, Choi S. The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment. Qual Life Res. 2007;16(Supplement 1):133–41.PubMedCrossRef
40.
go back to reference Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B. The Patient Reported Outcomes Measurement Informational System PROMIS; overview and developmental work, 2004–2006. Med Care. 2007;455:S3–11.CrossRef Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B. The Patient Reported Outcomes Measurement Informational System PROMIS; overview and developmental work, 2004–2006. Med Care. 2007;455:S3–11.CrossRef
41.
go back to reference DeWalt DA, Rothrock N, Yount S, Stone AA. Evaluation of item candidates: the PROMIS qualitative item review. Med Care. 2007;455(Supplement 1):S12–21.CrossRef DeWalt DA, Rothrock N, Yount S, Stone AA. Evaluation of item candidates: the PROMIS qualitative item review. Med Care. 2007;455(Supplement 1):S12–21.CrossRef
42.
go back to reference Hambleton RR, Swaminathan H, Rogers HJ. Fundamentals of item response theory. Newbury Park: Sage; 1991. Hambleton RR, Swaminathan H, Rogers HJ. Fundamentals of item response theory. Newbury Park: Sage; 1991.
43.
go back to reference Cella D, Chang C-H. Response to Hays et al. and McHorney and Cohen: A discussion of item response theory and its applications in health status assessment. Med Caer. 2000;38:S66–72. Cella D, Chang C-H. Response to Hays et al. and McHorney and Cohen: A discussion of item response theory and its applications in health status assessment. Med Caer. 2000;38:S66–72.
44.
go back to reference Hays RD, Morales LS, Reise SP. Item response theory and health outcomes measurement in the 21st century. Med Care. 2000;38:S28–42.CrossRef Hays RD, Morales LS, Reise SP. Item response theory and health outcomes measurement in the 21st century. Med Care. 2000;38:S28–42.CrossRef
45.
go back to reference McHorney CA, Cohen AS. Equating health status measures with item response theory: illustrations with functional status items. Med care. 2000;38:S43–59.CrossRef McHorney CA, Cohen AS. Equating health status measures with item response theory: illustrations with functional status items. Med care. 2000;38:S43–59.CrossRef
46.
go back to reference Reeve B, Fayers P. Applying item response theory modeling for evaluating questionnaire item and scale properties. In: Fayers P, Hays R, editors. Assessing quality of life in clinical trials: methods of practice. 2nd ed. USA: Oxford University Press; 2005. p. 55–73. Reeve B, Fayers P. Applying item response theory modeling for evaluating questionnaire item and scale properties. In: Fayers P, Hays R, editors. Assessing quality of life in clinical trials: methods of practice. 2nd ed. USA: Oxford University Press; 2005. p. 55–73.
47.
go back to reference National Institute of Neurological Disorders and Stroke (NINDS). User manual for the quality of life in neurological disordres (Neuro-QOL) measures, version 1.0. September 2010. National Institute of Neurological Disorders and Stroke (NINDS). User manual for the quality of life in neurological disordres (Neuro-QOL) measures, version 1.0. September 2010.
48.
go back to reference Mplus version 6.0. [Computer software]. Los Angeles: Muthén Muthén. Mplus version 6.0. [Computer software]. Los Angeles: Muthén Muthén.
49.
go back to reference Gershon RC, Lai JS, Bode R, Choi S, Moy C, Bleck T, et al. NeuroQOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res. 2011. doi:10.1007/s11136-011-9958-8. Gershon RC, Lai JS, Bode R, Choi S, Moy C, Bleck T, et al. NeuroQOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing. Qual Life Res. 2011. doi:10.​1007/​s11136-011-9958-8.
50.
go back to reference Skevington SM, Lotfy M, O’Connell KA. The World Health Organization’s WHOQUOL-BRIEF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL Group. Qual Life Res. 2003;13:299–310.CrossRef Skevington SM, Lotfy M, O’Connell KA. The World Health Organization’s WHOQUOL-BRIEF quality of life assessment: psychometric properties and results of the international field trial. A report from the WHOQOL Group. Qual Life Res. 2003;13:299–310.CrossRef
51.
go back to reference Thompson B, Daniel LG. Factor analytic evidence for construct validity of scores: a historical overview and some guidelines. Ed Psychol Measure. 1996;56:197–208.CrossRef Thompson B, Daniel LG. Factor analytic evidence for construct validity of scores: a historical overview and some guidelines. Ed Psychol Measure. 1996;56:197–208.CrossRef
52.
go back to reference Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Friedman SJ, Meyers BS. Stigma as a barrier to recovery: perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psych Serv. 2001;52:1615–20.CrossRef Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Friedman SJ, Meyers BS. Stigma as a barrier to recovery: perceived stigma and patient-rated severity of illness as predictors of antidepressant drug adherence. Psych Serv. 2001;52:1615–20.CrossRef
53.
go back to reference Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Raue P, Friedman SJ, Meyers BS. Perceived stigma as a predictor of treatment discontinuation in young and older outpatients with depression. Am J Psych. 2001;158:479–81.CrossRef Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Raue P, Friedman SJ, Meyers BS. Perceived stigma as a predictor of treatment discontinuation in young and older outpatients with depression. Am J Psych. 2001;158:479–81.CrossRef
Metadata
Title
The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use Across Neurological Conditions
Authors
Yamile Molina
Seung W. Choi
David Cella
Deepa Rao
Publication date
01-09-2013
Publisher
Springer US
Published in
International Journal of Behavioral Medicine / Issue 3/2013
Print ISSN: 1070-5503
Electronic ISSN: 1532-7558
DOI
https://doi.org/10.1007/s12529-012-9243-4

Other articles of this Issue 3/2013

International Journal of Behavioral Medicine 3/2013 Go to the issue