Validation of an adapted instrument to measure female genital fistula-related stigma

Female genital fistula results in severe physical, psychological, and social sequelae. Qualitative research confirms stigma pervasiveness; however, no quantitative instrument exists to measure fistula-related stigma. We adapted an existing HIV-related stigma instrument to fistula-related stigma, and assessed its reliability and validity. We recruited 60 Ugandan women seeking genital fistula surgery (December 2014-June 2015). We used exploratory factor analysis to explore the scale’s latent structure and evaluated internal consistency reliability with Raykov’s ρ statistic. We assessed construct validity through linear regression of stigma with quality of life, depressive symptoms and self-esteem. We retained 15 items across factors ‘enacted stigma’ and ‘internalized stigma’ (ρ=0.960 and ρ=0.748, respectively). Stigma was inversely associated with all quality of life domains; effect sizes were largest for environmental (enacted stigma, 0.69-point reduction) and psychological (internalized stigma, 0.67-point reduction) domains. Both stigma domains were associated positively with depressive symptoms and inversely with self-esteem, with 0.75 and 1.05-point increases in depressive symptoms and 0.45 and 0.77-point decreases in self-esteem for enacted and internalized stigma, respectively. Results suggest the reliability and validity of the adapted fistula stigma instrument. This instrument may help us understand stigma levels, compare stigma across individuals and communities, prioritize stigma-reduction strategies, and assess intervention impact.