Abstract
BackgroundAccessing 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.MethodsThis 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.ResultsA 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.ConclusionsThis 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.
Highlights
Accessing surgical repair poses challenges to women living with female genital fistula who experience intersectional vulnerabilities including poverty, gender, stigma and geography
Our study aimed to develop and validate composite measures of barriers to accessing fistula care currently faced by women living with fistula in Nigeria and Uganda
The study was nested within an evaluation of a complex social behavior change (SBC) intervention to reduce barriers to fistula care in Nigeria and Uganda under the United States Agency for International Development (USAID)-funded Fistula Care Plus Project implemented by EngenderHealth [23]
Summary
Accessing surgical repair poses challenges to women living with female genital fistula who experience intersectional vulnerabilities including poverty, gender, stigma and geography. Policies and programs in low- and middle- income countries (LMICs) inadequately address barriers faced by women living with fistula in accessing treatment services. Women living with fistula frequently experience humiliation, isolation and stigma, among many other barriers, that prevent them from seeking and receiving comprehensive care and treatment, including surgery and follow up support services. Studies indicate that barriers cut across psycho-social, cultural, awareness, social, financial, transportation, facility shortages, quality of care, and political dimensions [5]. The complexity of these barriers and relative rarity of the condition create measurement challenges for countries seeking to monitoring access to fistula care
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