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Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI)

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Abstract

Purpose

Most measures of stigma are illness specific and do not allow for comparisons across conditions. As part of a study of health-related quality of life for people with neurological disorders, our team developed an instrument to assess the stigma for people with chronic illnesses.

Methods

We based item content on literature review, responses from focus groups, and cognitive interviews. We then administered the items to people with neurological disorders for psychometric testing.

Results

Five hundred eleven participants completed items of the stigma scale. Exploratory factor analysis produced two factors that were highly correlated (r = 0.81). Confirmatory factor analysis produced high standardized loadings on an overall stigma factor (0.68–0.94), with poorer loadings on the two sub-domains (−0.12 to 0.53). These results demonstrated a sufficiently unidimensional scale that corresponded with the bifactor model. Item response theory modeling suggested good model fit, and differential item functioning analyses indicated that the 24-item scale showed potential for measurement equivalence across conditions.

Conclusions

Our efforts produced a stigma scale that had promising psychometric properties. Further study can provide additional information about the SSCI and its benefit in measuring the impact of stigma across conditions.

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Acknowledgments

This study was funded by the National Institute of Neurological Disorders and Stroke (NINDS) contract number HHSN265200423601C. Deepa Rao is supported by a career development award funded by the National Institute of Mental Health (NIMH: grant number K23 MH 084551). The authors would like to thank the assistance of Claudia S. Moy in making this study possible, also Paul K. Crane for his psychometric guidance, and Patrick W. Corrigan and Nicolas Rüsch for providing comments on earlier drafts of this paper.

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Authors and Affiliations

  1. Center on Outcomes, Research and Education, Evanston Northwestern Healthcare, Evanston, IL, USA

    Deepa Rao, Seung W. Choi, David Victorson & David Cella

  2. Department of Psychiatry and Behavioral Sciences, Northwestern University, Chicago, IL, USA

    Deepa Rao, David Victorson & David Cella

  3. Institute for Healthcare Studies, Northwestern University, Chicago, IL, USA

    Deepa Rao, Seung W. Choi, David Victorson, Allen Heinemann & David Cella

  4. Center for Rehabilitation Outcomes Research, Rehabilitation Institute of Chicago, Chicago, IL, USA

    Rita Bode & Allen Heinemann

  5. Department of Psychology, University of North Carolina at Charlotte, Charlotte, NC, USA

    Amy Peterman

  6. Department of Physical Medicine and Rehabilitation, Northwestern University, Chicago, IL, USA

    Allen Heinemann

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  1. Deepa Rao
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  7. David Cella
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Correspondence to Deepa Rao.

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Rao, D., Choi, S.W., Victorson, D. et al. Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI). Qual Life Res 18, 585–595 (2009). https://doi.org/10.1007/s11136-009-9475-1

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