Background The prevalence of multiple sclerosis (MS) is thought to be increasing among UK minority ethnic groups but little is known about their illness perceptions of its causation. These may influence attitudes to service use.
Aim To explore meanings people severely affected by MS attribute to their disease, and understand how these may be culturally patterned.
Method Semistructured qualitative interviews were conducted among black Caribbean (BC) and white British (WB) people with MS (PwMS) with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach.
Results 15 BC and 15 WB PwMS were interviewed with mean ages of 46.6 and 56.9 years respectively. Causal attributions were complex, with most PwMS reporting multiple explanations to account for their MS. PwMS from both ethnic groups provided ‘logical and scientific’ accounts; these included genetic/viral influences, stress, the environment and lifestyle factors. Familial history of MS was specific to WB PwMS, while some BC PwMS referred to bodily insults, for example injuries. Traditional ‘supernatural’ attributions departed from a biomedical perspective and included religious challenges or tests from God. Although these two views were cited more frequently by BC than WB PwMS, the notion of punishment was not always fully endorsed by them. While ‘fate or destiny’ accounted for another lay attribution specific to BC PwMS, where MS was believed to have been written into their life plan, a number of PwMS from both groups acknowledged the possibility of randomness MS causation.
Conclusion The authors identify, for the first time, a range of illness attributions PwMS use to explain their illness that depart from a biomedical model, and are culturally specific. ‘impeccable assessment’, central to the principle of specialist palliative care and neurology, must incorporate cultural relativism; this identifies and values social difference which maybe central in enhancing concordance with treatment and care.
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