“One-by-One, TB Took Everything Away From Me”: A Photovoice Exploration of Stigma in Women with Drug-Resistant Tuberculosis in Mumbai

Abstract

Stigma related to drug-resistant tuberculosis (DR-TB), one of the world's most severe infectious diseases, is a major barrier to TB elimination particularly for women living in settings of gender inequity. Drawing on the participatory action research (PAR) framework of photovoice, we explored lived experiences of DR-TB stigma among nine affected women in Mumbai, India. Consenting women took, shared, and contributed to the critical interpretation of 37 non-identifying images and associated narratives with one another and with PAR researchers. The study surfaced vivid, untold stories of trauma and life-altering encounters with enacted, anticipated, and internal stigma, that were characterized by loss (of self, voice, status, mobility), abuse (mental, social) and deep internal distress (shame, isolation, suffocation, peril). The study also revealed how stigmatized women found means to build resilience and resist the impacts of stigma. We further witnessed the building of their collective resilience through study participation. Photovoice proved to be a uniquely compelling method of data capture and interpretation, with potential to develop meaningful engagement and solidarity among women affected by DR-TB.