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Health Educ Behav. 1999 Aug;26(4):443-53.

Illness representations: mapping the experience of lupus.

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  • 1Department of Exercise, Sport and Health Studies, University of Texas at Arlington 76019-0259, USA.


Lupus, a chronic illness that mainly affects women, presents numerous challenges to health professionals due to the unpredictable nature of the disease course. To provide appropriate educational interventions for those living with lupus, health educators must develop methods best suited to individuals' current mental representations of their illness. A cognitive mapping strategy was used in this study to ascertain the patients' own perceptions of living with lupus. The participants (N = 20) identified 192 unduplicated concepts in their maps, which were ultimately collapsed into 12 major categories. The results of this study indicate that, although diagnosed with the same illness, the women presented with different mental representations of their illness. Consequently, cognitive mapping could serve as a useful tool to initiate tailored educational interventions for those living with lupus.

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