Cognitive dissonance in tuberculosis stigma: A mixed methods analysis of tuberculosis stigma measurement in South Africa

Background: The Patient and Community Perspectives Towards Tuberculosis are the most common measure of tuberculosis (TB) stigma in sub-Saharan Africa. The instrument and its sub-scales (patient and community) have been quantitatively validated but have not undergone qualitative exploration in South Africa. Methods: We explored whether the Patient Perspectives Towards Tuberculosis adequately represents stigma as experienced by people with TB in South Africa. We used mixed methods to explore differences between the lived experience of TB and the quantitative stigma score. Participants with rifampicin-resistant TB and HIV co-infection completed the quantitative scale. Among those, 30 also completed qualitative interviews about their experiences and perceptions of TB stigma. We used cognitive interviewing techniques to interrogate congruence between the two data sources. Results: The scale demonstrated adequate factor structure with approximately normal distribution. Participants qualitatively described experiences and perceptions of stigma that contradicted their quantitative responses. The scale could not discriminate between participants who reported distressing experiences of TB stigma, and those who did not. Item wording caused confusion, and many elements of TB stigma most discussed by participants are not reflected in the scale. Conclusions: The Patient Perspectives Towards Tuberculosis lacks theoretical and experiential domains that are central to TB stigma in South Africa. Studies validating stigma scales in new populations should integrate a mixed-methods approach to ensure content validity.