Research: the stigma of MS

EpubMolina et al. The Stigma Scale for Chronic Illnesses 8-Item Version (SSCI-8): Development, Validation and Use Across Neurological Conditions.Int J Behav Med. 2012 May

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.”

“Do you feel stigmatised?”

2 thoughts on “Research: the stigma of MS”

  1. Yes, and I know it may reflect my own prejudice – it is a complicated area. I know I am influenced by the thinking and attitudes that were around when it was first suggested that I could have MS, decades ago. Of course it used tob (still is?) listed as a 'dread disease' by insurance companies, now wonder it is stigmatised. I find that people tend to label PwMS (one reason I think language is important, and dislike the use of 'patient' and 'sufferer'. But it is as though people think you've suddenly lost your wits, too, which is not the case for most people. In fact you need greater determination and an abundance of wits (and wit!) to manage/cope/thrive/survive – call it what you will. I will now get off the soapbox, phew!

  2. When I first went to school I realised I was the only child in my class who wrote with my left hand. A wonderful and progressive head teacher heard I was struggling with being different and took me round the entire school showing me all the kids and teachers who were left-handed and told me about various famous people who were too. I got back to the class extremely happy.Fifteen years later I realised I was gay in the midst of the tabloid frenzy over AIDS and a very nasty Tory party in government. I stayed in the closet for some time before deciding I had to come out to show my neighbours and colleagues that actually my life was as dull / exciting / hard-going / happy as theirs.A further twenty years on and I was diagnosed with MS. I returned to work after some months off and decided I was going to show that PwMS / disabled people in general still have career ambitions, valuable contributions to make etc. Not everyone has the opportunity to face down ignorance, indifference, prejudice and stigma. That's why it's so important to me to challenge prejudice by being visible as me – the left-handed, disabled lesbian who's actually damn good at her job.

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