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Qual Health Res. 2005 May;15(5):606-19.

Illness representations of systemic lupus erythematosus.


Systemic lupus erythematosus (SLE) is a chronic illness that usually follows a fluctuating course and, therefore, can be difficult to diagnose. Consequently, individuals with SLE often hold beliefs about the nature and course of the illness that are at odds with medical opinion. Clearly, a shared understanding of the illness would be beneficial to illness management. In this study, the authors used semistructured interviews and interpretative phenomenological analysis to explore the content of the illness representations held by 36 individuals diagnosed with SLE. They also identified the ways in which these illness representations were generated initially and attempted to determine whether changes occurred over time in these illness representations, as predicted by the self-regulatory model.

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