What will people think of me? Measuring the anticipated risk of disease related stigma

Background: Although a conceptual definition of stigma related to diseases such as HIV/AIDS, cancer, and obesity exists, no scale has been developed to measure the anticipatory expectations of the magnitude of penalties associated with being identified as possessing a stigmatizing health condition. The goal of this study was to develop and validate measures of this construct. Methods: Items were culled from previously published sources and theory. The final pool of items reflected three sub-domains of the construct: (1) psychological consequences, including self-image, social isolation, withdrawal, and disclosure concerns; (2) interpersonal consequences, including negative identity, blame and attribution of responsibility, social disqualification, and social rejection; and (3) structural consequences related to denial or limitation of opportunities. To test the psychometric properties of the scale, pilot items were administered to 300 respondents, examined for their dimensionality and internal consistency, tested for measurement invariance, and assessed for predictive validity. Results: Exploratory and confirmatory factor analysis procedures confirmed the existence of the three hypothesized sub-domains. Estimates of construct validity were confirmed by relating the scales to five existing scales. Predictive validity was established by examining relationships between the scale and intentions to engage in stigma-associated behaviors. A final scale consisted of 18 items. Conclusions: While stigma is a popular construct, the concept of anticipated stigma has not been sufficiently developed with populations who are not already suffering from the disease of interest. This scale should prove useful for researchers interested measuring concerns about self-presentation related to disease stigma which may outweigh health promotion motives.