Identifying and responding to barriers to fistula care: A research to action partnership

Fistula Care Plus (FC+) has collaborated with the Population Council on a research-to-action partnership to identify and respond to barriers that keep women from seeking or reaching fistula services. The partnership started with a literature review on barriers affecting women’s access to fistula treatment in low-income countries. The review identified numerous barriers women often face and categorized these barriers as psycho-social, cultural, awareness, social, financial, transportation, facility shortages, and quality of care factors. Building on this, the Population Council conducted formative, qualitative research in 2015 to understand the specific barriers women face in Nigeria and Uganda and to identify enabling mechanisms that mitigate the most salient barriers. In 2016, findings from these studies informed FC+ in the design of a comprehensive information, screening and referral intervention aimed at reducing the awareness, financial, and transportation barriers that impede women’s access to fistula treatment in Nigeria and Uganda.

In 2017, FC+ launched the Fistula Treatment Barrier Reduction Intervention to strengthen community-based screening and referral to the treatment facility in two sites within Nigeria (Ikwo and Katsina LGAs) and one in Uganda (Kalungu District). The Intervention used a consistent fistula screening algorithm across multiple communication and referral pathways, including community agents, primary health facilities, and a fistula screening and referral hotline paired with mass media. The Intervention also provided a transportation voucher to enable positively screened women to travel for free to and from an accredited fistula treatment facility. In each of the three sites, FC+ supported training and capacity building activities that sought to strengthen community-based screening and referral to the treatment facility.

As part of the Intervention, FC+ collaborated with Viamo (formerly VOTO Mobile) to design a free interactive voice response (IVR) fistula screening hotline. The fistula hotline was widely advertised through graphic flyers disseminated by community agents and PHC workers. Community agents followed-up with women who called into the hotline and facilitated their free transport to the fistula treatment facility using a transportation voucher designed for the intervention. Community agents also used the fistula hotline to screen women using their own phones during their community mobilization activities (home visits, community forums, etc.); while primary health facility workers used a paper-based job aid to screen patients at primary health facilities. The Population Council conducted implementation research to evaluate the effects of this Intervention. The Intervention successfully facilitated fistula screening and referral for hundreds of women in implementation area sites. Publications documenting the findings of this research-to-action partnership are provided below.  

Manuscripts

Use of interactive voice response technology to address barriers to fistula care in Nigeria and Uganda. (Fistula Care Plus and Population Council, 2020). 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. 

Removing barriers to fistula care: Applying appreciative inquiry to improve access to screening and treatment in Nigeria and Uganda. (Fistula Care Plus and Population Council, 2019). 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 programming 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.

Poverty is the big thing”: exploring financial, transportation, and opportunity costs associated with fistula management and repair in Nigeria and Uganda. (Population Council, 2018). Women living with obstetric fistula often live in poverty and in remote areas far from hospitals offering surgical repair. These women and their families face a range of costs while accessing fistula repair, some of which include: management of their condition, lost productivity and time, and transport to facilities. This study explores, through women’s, communities’, and providers’ perspectives, the financial, transport, and opportunity cost barriers and enabling factors for seeking repair services

Barriers to obstetric fistula treatment in low‐income countries: a systematic review. (Population Council, 2017). Results from this review indicate that there are many barriers to fistula treatment, which operate at the individual, community and national levels. The successful treatment of obstetric fistula may thus require targeting several barriers, including depression, stigma and shame, lack of community‐based referral mechanisms, financial cost of the procedure, transportation difficulties, gender power imbalances, the availability of facilities that offer fistula repair, community reintegration and the competing priorities of political leadership.

 

Webinars

Innovative Solutions to Reduce Barriers to Fistula Care: Linking Community Health Systems, Digital Health Solutions, and Specialized Surgical Care. April 9, 2020.

Note: a full summary of questions asked by participants during the webinar and their responses will be available soon.

Research Briefs

Reducing Barriers to Accessing Fistula Repair: Implementation Research in Uganda. (2019) Population Council, in collaboration with the FC+ Project at EngenderHealth, conducted implementation research to understand whether a comprehensive information, screening, and referral intervention reduces transportation,communication, and financial barriers to accessing fistula screening, diagnosis, and treatment in Uganda.

Reducing Barriers to Accessing Fistula Repair: Implementation Research in Katsina. (2018) Population Council, in collaboration with the FC+ Project at EngenderHealth, conducted implementation research to understand whether
a comprehensive information, screening, and referral intervention reduces transportation, communication, and financial barriers to accessing preventive care, detection, and treatment of fistula in Nigeria’s Katsina State.

Reducing Barriers to Accessing Fistula Repair: Implementing Research in Ebonyi. (2018) Population Council, in collaboration with the Fistula Care Plus (FC+) project at EngenderHealth, conducted implementation research to understand whether a comprehensive information, screening, and referral intervention reduces transportation, communication, and financial barriers to accessing preventive care, detection, and treatment of fistula in Nigeria’s Ebonyi State.

Reducing Barriers to Accessing Fistula Repair: Establishing a Baseline in Uganda. (2017) The research conducted by Population Council for the FC+ project aimed to understand whether a comprehensive information, screening, and referral intervention can reduce transportation, communications, and financial barriers to accessing preventive care, detection, and treatment of fistula in Uganda. Baseline data reveal the necessity of a comprehensive intervention to address fistula treatment barriers in Uganda.

Reducing Barriers to Accessing Fistula Repair: Establishing a baseline in Katsina. (2017) The research conducted by Population Council for the FC+ project aimed to understand whether a comprehensive information, screening, and referral intervention can reduce transportation, communications, and financial barriers to accessing preventive care, detection, and treatment of fistula in Nigeria’s Katsina State. Baseline data reveal the necessity of a comprehensive intervention to address fistula treatment barriers in Katsina.

Reducing Barriers to Accessing Fistula Repair: Establishing a Baseline in Ebonyi. (2017) The research conducted by Population Council for the FC+ project aimed to understand whether a comprehensive information, screening, and referral intervention can reduce transportation, communications, and financial barriers to accessing preventive care, detection, and treatment of fistula in Nigeria’s Ebonyi State. Baseline data reveal the necessity of a comprehensive intervention to address fistula treatment barriers in Ebonyi.

Barriers to Fistula Repair in Nigeria: A Formative Study. (2016). A formative research study was conducted in Nigeria, building on upon the results of a systematic review to better understand the barriers and enabling factors for fistula repair care delivery and access. Understanding how Nigerian women living with fistula decide to seek care, identify and reach medical centers, and receive adequate and appropriate care is integral and continues to influence the design of a larger implementation pilot. This study focuses on Fistula Care Plus project-supported fistula repair centers.

Barriers to Fistula Repair in Uganda: A Formative Study. (2016). A formative research study was conducted in Uganda, building on upon the results of a systematic review to better understand the barriers and enabling factors for fistula repair care delivery and access. Understanding how Ugandan women living with fistula decide to seek care, identify and reach medical centers, and receive adequate and appropriate care is integral and continues to influence the design of a larger implementation pilot. This study focuses on Fistula Care Plus project-supported treatment facilities where fistula camps are routinely held.

Research Reports

Formative Research on Assessing Barriers to Fistula Care and Treatment in Nigeria. (2016). This study employed a qualitative research design using semi-structured in depth interviews (IDIs) and focus group discussions (FGDs) of women living with fistula, their family members, community stakeholders, and health care practitioners, in two fistula care centers and surrounding communities in the northern and southern parts of Nigeria (Kano and Ebonyi states, respectively).

Formative Research on Factors Influencing Access to Fistula Care and Treatment in Uganda. (2016). This study presents qualitative findings from formative research on the barriers and enabling factors for fistula treatment in Uganda, building on barriers identified in a systematic review of the literature, and examining how these broad factors manifest in Hoima and Masaka districts in Uganda, where fistula camps are held three or four times a year. 

Barriers to Obstetric Fistula Treatment in Low-Income Countries: A Systematic Review. (2014). This review aims to identify and understand the barriers affecting women’s access to fistula repair, to inform the design of possible interventions that may be effective in addressing these barriers. This work may also identify research gaps surrounding fistula in low-income
countries that require targeted formative research before interventions can be designed.

Tools

Interactive Voice Response (IVR) Hotline: Deploying Technology for Fistula Care This manual describes activities, considerations and recommendations that will aid the design, development and implementation of an IVR Hotline for the execution of a fistula intervention. This document also highlights observations, achievements and areas of improvement in the Fistula Care IVR Hotline development and intervention process. Furthermore, the document is a showcase of EngenderHealth’s role in the eradication of stigmatization faced by women with fistula.