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.

Removing barriers to fistula care: Applying appreciative inquiry to improve access to screening and treatment in Nigeria and Uganda.

A research-to-action collaboration sought to understand and respond to barriers to female genital fistula treatment in Nigeria and Uganda. This was guided by appreciative inquiry, a participatory approach for transformative programing with four phases: (1) inquire, (2) imagine, (3) innovate, and (4) implement. Through this process, partners designed and refined a treatment barrier reduction intervention using multiple communication channels to disseminate a consistent fistula screening algorithm and provide transportation vouchers to those screening positive. Partnership between an implementation organization, a research institution, and local community partners enabled data-driven design and patient-centered implementation to address specific barriers experienced by women.

Use of interactive voice response technology to address barriers to fistula care in Nigeria and Uganda.

BACKGROUND: The use of digital health technologies has expanded across low-resource settings, including in programs seeking to improve maternal health care seeking and service usage. However, there has been limited use of these technologies for screening and referral within maternal health, and many interventions have relied on SMS tools, which may have limited impact in settings with low female literacy. Digital health technologies have the potential to increase access to care for chronic maternal morbidities, such as obstetric fistula, and for women facing stigma, geographic isolation, and other sociocultural barriers to care seeking. This study documented the process of developing and implementing an innovative fistula screening and referral hotline using interactive voice response (IVR) technology, and described the service usage results and stakeholder perspectives associated with the hotline. METHODS: The IVR hotline was introduced within the context of a broader Fistula Treatment Barriers Reduction Intervention implemented by the USAID-funded Fistula Care Plus project in Ebonyi and Katsina states in Nigeria and Kalungu district in Uganda. The intervention used three communication pathways to disseminate fistula information and conduct fistula screening: trained community agents, trained primary health care providers, and the IVR hotline paired with mass media messaging. All positively-screened women were eligible to receive vouchers for free transportation to an accredited fistula treatment center. Quantitative and qualitative data on intervention implementation and use across all three communication pathways were gathered during intervention implementation, at baseline, midline, and endline; as well as through ongoing program monitoring. This study presents findings specifically on service usage and stakeholder perspectives related to the IVR hotline. RESULTS: Over a period of ten to twelve months of implementation, depending on the intervention area, a total of 566 women completed the IVR hotline screening process. Across the areas, 415 (73%) hotline callers screened positive for fistula symptoms. Hotline users and implementation partners reported positive impressions of the hotline, particularly the ability to preserve anonymity in seeking information and referral for fistula symptoms. Challenges to hotline use included limited mobile phone ownership and poor cellular network connectivity, affecting operability by women and community agents. CONCLUSIONS: Implementation of the fistula screening hotline suggests that IVR-based interventions may be useful in expanding access to health services for stigmatized conditions, particularly in settings where literacy is limited. In the current context, such IVR tools require pairing with community and health system partners to complete referral and support clients. Further program experience and evaluation research is required to understand the options for integrating the IVR hotline or other interventions similarly using mobile technologies for screening and referral into broader digital health platforms that are sustained by national health systems or commercial business models.