Measuring barriers to fistula care: investigating composite measures for targeted fistula programming in Nigeria and Uganda

BACKGROUND: Accessing surgical repair poses challenges to women living with female genital fistula who experience intersectional vulnerabilities including poverty, gender, stigma and geography. Barriers to fistula care have been described qualitatively in several low- and middle-income countries, but limited effort has been made to quantify these factors. This study aimed to develop and validate composite measures to assess barriers to accessing fistula repair in Nigeria and Uganda. METHODS: This quantitative study built on qualitative findings to content validate composite measures and investigates post-repair client surveys conducted at tertiary hospitals in Northern and Southern Nigeria and Central Uganda asking women about the degree to which a range of barriers affected their access. An iterative scale development approach included exploratory and confirmatory factor analyses of two samples (n = 315 and n = 142, respectively) using STATA 13 software. Reliability, goodness-of-fit, and convergent and predictive validity were assessed. RESULTS: A preliminary 43-item list demonstrated face and content validity, triangulated with qualitative data collected prior to and concurrently with survey data. The iterative item reduction approach resulted in the validation of a set of composite measures, including two indices and three sub-scales. These include a Financial/Transport Inaccessibility Index (6 items) and a multidimensional Barriers to Fistula Care Index of 17 items comprised of three latent sub-scales: Limited awareness (4 items), Social abandonment (6 items), and Internalized stigma (7 items). Factor analyses resulted in favorable psychometric properties and good reliability across measures (ordinal thetas: 0.70–0.91). Higher levels of barriers to fistula care are associated with a woman living with fistula for longer periods of time, with age and geographic settings as potential confounders. CONCLUSIONS: This set of composite measures that quantitatively captures barriers to fistula care can be used separately or together in research and programming in low- and middle-income countries. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12905-021-01288-3.