BACKGROUND: Although the impact of stigma has been highlighted for epileptic populations, the experiences of people living with other neurological conditions have been less well studied.
PURPOSE: In order to promote research on stigma among people with neurological conditions, the investigators sought to develop and psychometrically validate an 8-item questionnaire measuring internalised and enacted stigma experienced by people with epilepsy, MS, Parkinson’s disease (PD), stroke and amyotrophic lateral sclerosis (ALS).
METHOD: They used item response theory methodologies to select items and field tested their items with 587 participants from eight academic medical centres across the USA.
RESULTS: They conducted exploratory and confirmatory factor analysis as well as examined the scale’s reliability and validity. In addition, they 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. Their results suggest fairly low stigma for neurological populations. In addition, their 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.
“Stigma (plural: stigmata) is a word that originally means a “sign”, “point”, or “branding mark”. Social stigma is the severe disapproval of, or discontent with, a person on the grounds of characteristics that distinguish them from other members of a society. Stigma is an important issue as it does affect MSers social and occupational functioning, which is why a lot of MSers prefer to remain in the “closet”, i.e. they don’t want others to know about their disease. There is no doubt that MSers are stigmatised in particular when it comes to employment and insurance issues. What can we do about it? De-stigmatising a disease is all about education; educating individuals with the disease and society in general.”