The psychometric assessment of internalized stigma instruments: a systematic review

Sharon Anne Maria Stevelink, Ingeborg C Wu, Carlijn G.N. Voorend, Wim H. van Brakel


Objective: Many instruments have been developed to assess stigma and related constructs across health conditions. The objective of this study was to provide an overview of the best validated instruments to measure internalized (or self-) stigma in health conditions where stigma plays a major role.

Method: A systematic literature review was conducted by searching relevant databases and by reviewing the bibliographies of relevant papers. Quantitative studies were included if the items used, or a sample of the instrument, were presented in the paper and if the studies focussed on the initial development of the instrument or a further validation. Health conditions included were HIV/AIDS, mental health, leprosy, asthma, epilepsy, cancer, obesity and tuberculosis. Psychometric properties of the included studies were assessed using several quality criteria: content validity, internal consistency, construct validity, criterion validity, reproducibility, responsiveness, floor and ceiling effects and interpretability. We rated the quality of the psychometric testing of the instruments using criteria proposed by Terwee et al. and the COSMIN consortium.

Results: Thirty-three papers were included of which 21 were identified as actual instrument development studies. Of the 21 instruments included only two instruments received three positive ratings on the quality criteria. Twelve  instruments were rated at least three times as indeterminate, especially for the criteria internal consistency and construct validity. This was due to insufficient samples sizes for factor analyses and hypotheses that were not formulated properly. At least one negative rating was given for five instruments. Content and construct validity as well as internal consistency were most often assessed, whereas agreement and responsiveness received least attention.

Conclusions: This review attempted to rate the available instruments to measure internalized stigma using current standard quality criteria for testing psychometric properties. Only the Child Attitude Towards Illness Scale and the Internalized Stigma of Mental Illness received three positive ratings on the quality criteria. Based on the results, we conclude that the majority of the instruments needs further testing of their psychometric properties.

Implications: The need was identified for a simplified testing protocol to design an instrument development study, to assess certain psychometric properties and to specify the preferred statistical methods for testing these. In addition, researchers should be aware that re-validation of instruments is necessary once application will take place in cultures and study populations other than the one(s) the instrument was initially developed for.


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