Removing Barriers to Fistula Care: Applying Appreciative Inquiry to Improve Access to Screening and Treatment in Nigeria and Uganda

"The IVR [interactive voice response] approach may address barriers to screening, referral, and treatment for other health issues faced primarily by geographic isolated, low-literacy, and otherwise marginalized populations."

The United States Agency for International Development (USAID)-supported Fistula Care Plus (FC+) Project, EngenderHealth, and the Population Council engaged in a research-to-action collaboration to increase knowledge on barriers to and enablers of female genital fistula treatment in Nigeria and Uganda, and to respond accordingly. This article describes that collaborative effort, including the use of appreciative inquiry, a participatory action-research approach, to design and refine an intervention aimed at improving access to fistula treatment using multiple communication channels.

In 2015, the Population Council team conducted in-depth interviews and focus group discussions with women with fistula, family members, and other community stakeholders in Ebonyi and Kano States in Nigeria and in Hoima and Masaka Districts in Uganda. Informed by the findings, EngenderHealth, Population Council, and local partners used an adapted appreciative inquiry model as a conceptual guide, which is illustrated in Figure 1 of the article and described in detail. In brief, the process phases included:

• Inquire: Barriers identified included, for example, stigma that prevents women from participating in community events where fistula and other women's health issues are discussed and hinders open discussion of symptoms with peers and with community-based health workers. Enablers identified included, for example, mass media (e.g., radio), which community members felt may improve fistula knowledge and treatment by directly reaching women not well served by community-based, in-person approaches.
• Imagine: Considering those barriers and enablers, the partners began identifying potential interventions. They were guided by several key principles: Centring the intervention on women who have not been well served by existing strategies; ensuring accurate and consistent fistula information and screening messages; deploying multiple communication channels; minimising gatekeepers and wasted time; and facilitating social support to fistula clients.
• Innovate: The EngenderHealth team designed an intervention to strengthen screening and referral mechanisms through phone-based communication and community agents. (Table 2 summarises the actors in the intervention, including key local partners and numbers trained to implement it). In essence, it entailed 3 channels for fistula messages and screening: mass media and a free phone hotline, community agents, and primary health facility workers. At its centre was a free fistula hotline that screens callers for fistula and collects data on positively screened callers. The EngenderHealth team collaborated with VOTO Mobile, now Viamo, to field-test and then deploy interactive voice response (IVR) to tackle the barriers identified in specific ways. For example, for women reluctant to seek face-to-face services to discuss their fistula symptoms, IVR provides a way to report these symptoms and receive accurate information directly without in-person interaction. The EngenderHealth team also trained community agents to screen women for fistula using the hotline, so that limited literacy among this cadre does not hinder the ability to screen and refer women who do feel comfortable interacting with community peers. The project used one consistent screening algorithm across these channels and also created one referral enabler for all positively-screened women: a voucher for free transportation - with a companion - to and from an accredited fistula treatment facility (in response to formative research in Nigeria revealing that social norms and long distances to care make it difficult for women to travel to fistula care sites alone). Figure 3 illustrates the woman-centred pathways in which women with fistula symptoms are identified, screened, and referred for fistula care.
• Implement: The EngenderHealth team sought advice and input from local partners to refine and adjust aspects of the intervention. This was an iterative and collaborative process, largely informed by feedback from in-country community mobilisation specialists, who are attuned to the realities on the ground. An example of a refinement made: Initially, the plan was to utilise a paper-based job aid for the community agents who undertook community outreach activities under this intervention, but EngenderHealth country staff learned that many are nonliterate. Through consultations with partners, the community-based screening approach was modified, with the community agents using the IVR hotline to conduct facilitated screenings.

Assessing this appreciative inquiry process, the authors of the article assert that "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." They offer a number of feasibility and replication considerations for others; for example, it is recommended that partners applying this approach incorporate sustainability planning from the start. In the case of the fistula research-to-action partnership described here, the collaborators are conducting an evaluation and plan to disseminate the findings to community-based stakeholders and national policymakers in each implementation country in order to promote the adoption and sustainability of relevant intervention components.