Development and Validation of Generic Measures of Individual-Level Stigma for Adolescents With a Chronic Illness

This study aims to develop and validate generic measures of perceived, internalized and enacted stigma for use with adolescents who have a diverse range of chronic illnesses. The findings of a qualitative study aimed at capturing commonalities in lived experience of the forms of stigma among adolescents with diverse illnesses were used to create the measures. Think-aloud interviews were conducted to ensure the measures were clearly understood by adolescents with an illness. The psychometric properties of the measures were then examined using a convenience sample of 189 adolescents with various illnesses. Principal component analyses of the measures identified four components for internalized stigma, two components for perceived stigma, and three components for enacted stigma. The internal consistency and test-retest reliability of the measures were acceptable. As expected, each measure correlated moderately with the self-esteem, and depression and anxiety measures but did not correlate substantially with the social desirability measures, providing support for predictive and discriminant validity. The three generic measures have sufficient reliability and validity to assess individual-level stigma among adolescents with chronic illnesses.