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

ABSTRACT

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 ‘internalised 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 (internalised 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 internalised 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, prioritise stigma-reduction strategies, and assess intervention impact.

KEYWORDS:

• Female genital fistula
• obstetric fistula
• stigma
• quality of life
• instrument development
• Uganda

Acknowledgements

This work was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the United States National Institutes of Health (grants R21HD075008 and R00HD086232), the Fistula Foundation, and the United States Agency for International Development (USAID) via the Fistula Care Plus Project, administered by EngenderHealth under cooperative agreement AID-OAA-A14-00013. The opinions expressed are those of the authors and do not necessarily reflect the views of USAID, the National Institutes of Health, or the United States Government. AE, JB, HN, and AK were responsible for project development, instrument review and adaptation process, and data collection. AE, TN, and JT analysed the data and developed the draft manuscript. AE, JB, TN, NR, HN, AK, and JT provided critical feedback on the interpretation of the findings. All authors approved the final draft of the manuscript.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by Eunice Kennedy Shriver National Institute of Child Health and Human Development: [grant number R00HD086232], [grant number R21HD075008].