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.