Expand Availability of Routine Fistula Repair Services
In the first year, FTN established partnerships with four hospitals: Jamaa Mission Hospital, Gynocare Women’s and Fistula Hospital (formerly Gynocare Fistula Centre), Cherangany Nursing Home, and Kisumu County Hospital (Figure 1). Subsequently, Bomu Hospital, Kisii Gynocare Center, and Narok County Hospital were added as fistula surgeons completed their training and re-located. Partnerships with hospital and county administrations were established, and community mobilization networks were created. Six of seven partner hospitals had a permanent fistula surgeon on site. The exception was Bomu Hospital that hosted the same FTN-trained visiting surgeon each quarter. Hospitals were clustered in Nairobi, western, rift valley, and the coastal region, which closely matches the population density of the country.
The Foundation provided payment to the FTN treatment sites to cover the full cost of fistula surgery – including screening, pre-and post-operative care, physical therapy, psychosocial counseling, and follow-up care for women who experienced complications or required additional management. The Foundation also provided operating theater equipment, surgical instruments, headlamps, equipment and consumable supplies for the ward as well as equipment necessary for data collection and documentation (like laptops and cameras). FTN sites also distributed Fistula Care Packs, individual kits of personal hygiene products, to each woman at the time of discharge.
Patient Characteristics
During the program period, a total of 6,223 surgeries were conducted at the seven hospital locations (Table 1). The median patient age at first surgery was 34 (IQR 25-54). Women came from all counties of Kenya, including neighboring Uganda, with most patients coming from the western counties of Bungoma (13%), West Pokot (12%), and Kisii (10%; Figure 1).
The mean time living with fistula-related incontinence was 8.3 years (SD 9.2; not shown); however, the mean number of years living with fistula decreased significantly across program years, with mean 9.3 years (SD 9.9) in 2014-15 compared to 8.1 (SD 9.2) in 2018-2019 p<0.001).
Surgery Outcomes
The majority of women had one surgery recorded in FTN records (93%). The most common type of surgical procedure conducted was vesico-vaginal fistula (VVF) repair (39.4%) with repair of 3rd and 4th degree perineal tears the second most common (30.0%; Table 1). The symptoms of unrepaired third and fourth degree perineal tears are nearly identical to fistula—incontinence of flatus and stool—and have been injuries that have been fairly commonly observed in other fistula treatment programs in Kenya.30 Recto-vaginal fistula (RVF) repair comprised 21.6% of cases. The majority of procedures (90.5%) resulted in an outcome of fistula closed and the woman continent at discharge. Some variation in surgical outcome was observed by procedure type, level of difficulty, and number of procedures done.
Health provider training and capacity building
The first cohort of two fistula surgeons was trained for a six-week period in September 2014 at the FIGO-accredited Gynocare training center in Eldoret. This initial training was followed by ongoing mentorship of surgeons through surgical workshops, on site visitation by members of FTN, participation in other surgical training opportunities through partner organizations, and opportunities for exposure to other trainers in different environments. Furthermore, interested doctors with little fistula surgery experience could shadow the trained surgeons prior to full enrollment in the training program, which helped both the doctor and FTN assess if fistula surgery training would be a good fit.
Over the six-year period, FTN supported training for 11 fistula surgeons, seven from Kenya and four from east and southern Africa. The seven Kenyan surgeons trained through FTN conducted 2,003 surgeries during the period. The remaining surgeries (4,220) were conducted by the senior surgeons in FTN who were trained prior to 2014. Four of these surgeons became trainers for FTN and assisted the trainees with ongoing mentorship and guidance. The success rate for the surgeons trained (fistula closed and dry) was 96%. Approximately 58% of the procedures performed by surgeon trainees were 3rd and 4th degree tears and RVF repairs which typically result in higher rate of success.
The FTN expanded in 2017 to include more health providers involved in the care and treatment of women with fistula. This expansion was made following feedback from the surgeons at the 2016 Stakeholder Meeting. From 2017-2020, 19 nurses were trained through FTN hailing from 5 centers. Nurse training began with a 2-week training at the Gynocare FIGO Training center for two nurses at a time and continued with on-site mentorship visits to the individual centers for ongoing coaching and support. Health providers in FTN also expanded to include surgeons from different disciplines, including urology, plastic surgery, and orthopedics. These providers were valuable in helping to address the needs of the most complex cases. These providers worked together with the network of fistula surgeons, who were primarily gynecologists, to share expertise and find the best solutions for the individual patients.
Beyond the clinical training, FTN helped foster a strong community of practice for providers involved in fistula care. Across the network, standardized care protocols were adopted, including clinical management tools, procedures and protocols to improve the quality of patient care and guide decision making, and standardized patient data collection forms. A WhatsApp group was created as a virtual forum to support real time collaboration and communication between the surgeons. Through this channel surgeons discussed and solicited feedback on treatment plans for complicated cases, and shared outcomes on what worked and what failed, helping other surgeons in the network benefit from the experience of their colleagues.
Annual FTN stakeholder meetings brought together the surgical team and community outreach teams to promote dialog, improve coordination and mutual understanding, and find the best solutions to meet the holistic needs of patients at the hospital and community levels. The surgeons were supported to attend conferences hosted by the International Society of Obstetric Fistula Surgeons (ISOFS) between 2014 and 2019 in Uganda, Nigeria, and Nepal, to learn from colleague surgeons, share their research, and further build a global community of fistula care providers.
Community Mobilization and Outreach
Through the network of five community organizations, FTN implemented a broad range of outreach and mobilization activities in collaboration with 19 County Governments in Kenya. However, people across the country were reached with fistula information through mass media mobilization, and women from each of the 47 counties of Kenya received fistula treatment.
Key community outreach activities included:
Training for Community Health Volunteers (CHVs), Health Providers, and Local Leaders: CHVs were trained using a curriculum developed by FTN that included modules on fistula prevention, fistula signs and symptoms, screening, identification, referral of clients, post-operative reintegration support, and strategies for effective community engagement. After training, CHVs were given a small monthly stipend and mobile phone airtime allowance to improve communication with communities and patients. After screening, CHVs also used mobile phones to send mobile money (M-pesa) to women with likely fistula to facilitate their transportation to the nearest treatment center. CHVs submitted monthly reporting on the number of women screened and referred for fistula, the number of outreach activities conducted, and the number of community members reached through their efforts. In addition to training CHVs, FTN also trained nurses, midwives, clinical officers, and other cadres of health providers based in health centers in order to improve early diagnosis and referral of women suspected with fistula. Finally, FTN sensitized influential community leaders and chiefs, the gatekeepers in many communities to support women with fistula and dispel entrenched myths and misperceptions that spread stigma.
Community Engagement and Mobilization Activities: FTN partners conducted community meetings and hosted events including rallies and roadshows—which often involved music, community theater, and puppetry – using “info-tainment” to generate excitement and interest while passing important information about fistula. WADADIA used an innovative approach to spread awareness by sponsoring the Let’s Kick Fistula out of Africa women’s soccer team that played in the Kenyan Premier League. The team traveled around the country to participate in matches and used the half time as an opportunity to disseminate information to large crowds.
Fistula Hotline and IEC Materials: FTN established a Fistula Hotline where people could call for more information or seek a referral for themselves or a family or community member. The hotline number was distributed through mass media including radio announcements and live radio talk shows that were broadcast in local languages throughout the country. FTN also printed and disseminated information, education and communication (IEC) materials including posters, banners, flyers, tote bags, keyrings, and calendars with the hotline number. Calendars were particularly effective as people kept them on their walls for many years, displaying the photographs and illustrations as part of their home or office décor and providing a good conversation starter for visitors.
FTN worked to improve the verbal screening process to strengthen case identification and referral. The Obstetric Fistula Community Based Assessment Tool (OF-COMBAT) was developed to provide enhanced verbal screening to more accurately identify potential fistula cases eligible for referral from cases that were less likely fistula (and more likely another type of incontinence.)29 The outreach organizations conducted 6,714 verbal fistula screenings and 4,690 fistula surgeries were performed for women referred through community outreach activities, representing 75% of total surgeries conducted through the network. Community outreach methods resulting in the most referrals were Community Health Volunteers, radio messages, and health facility staff sensitization, which were responsible for 63%, 13%, and 10% of referrals, respectively.
To strengthen adoption of community engagement strategies for obstetric fistula, FTN worked with the MOH to develop a training curriculum for CHVs on identification, referral, and support for women living with obstetric fistula. At the time of this writing, FTN was in the process of planning a Training of Trainers for 10 county-level facilitators to roll out the curriculum to high need areas. Additionally, FTN supported other national efforts on obstetric fistula by contributing to the MOH National Strategic Framework to End Female Genital Fistula in Kenya together with AMREF and UNFPA, and by supporting the Beyond Zero Campaign of the Kenyan First Lady Hon. Margaret Kenyatta to roll out effective community outreach and reintegration programs in high need areas.
Reintegration Post-Repair
FTN’s reintegration program was initiated in May 2017. The reintegration activities included follow-up and monitoring of women after surgery in their home environment, enrollment in survivor-led support groups, income generating opportunities, vocational training, educational support, and establishment of male advocacy groups.
From 2017 to 2020, 2,691 women underwent fistula surgery and were thus eligible for reintegration support. The outreach teams and CHVs conducted follow-up visits, in person or over the phone, to monitor and assess the survivors’ specific needs and determine the appropriate reintegration interventions. During the follow-up visits a questionnaire was administered to assess physical and psychosocial wellbeing. Most participants were followed-up with at least once (83.4%), and over half were followed-up with at least twice (61.7%) (Figure 3).
The physical and psychological outcomes across the 12 months post repair were encouraging. At 12 months post repair, 96% of women (n=1,092) reported that they were dry and not experiencing any incontinence (Table S2). Increases in socializing and working ability, and normal functioning were substantial from baseline through twelve-months. Over the twelve-month follow-up period, the proportion of women reporting being able to socialize “fully” with family and friends increased from 43% to 86%, the proportion of women reporting being able to fully work increased from 20% to 86%, and the proportion of women reporting normal functioning increased from 18% to 85%. Mean self-esteem increased from 4.3 at baseline (SD 1.5) to 6.3 (SD 1.4) at 12 months (Table S2).
Twenty support groups in 6 counties of Kenya were established and 423 women became participating members. The support groups established their own structures and elected their own officers to govern meetings. The support groups were comprised of between 20-25 members each, and typically met monthly. Nearly half (9) went on to register as Self-Help Community Based Organizations (CBOs) with the Kenyan government, which allows them access to greater opportunities and resources.
Beyond emotional and psychological support, these groups were a platform for income generation. The different groups selected the activities they felt best suited their members or the market in which they lived, including farming/horticulture, poultry farming, goat and cattle rearing, fish farming, and catering, and FTN provided seed funding to support these activities. The members also participated in table banking and merry-go-round savings practices, whereby members would all contribute a small amount of money to the kitty each month and would rotate access to those funds to each member in turn. FTN also supported women to enroll in training programs in tailoring, hairdressing, bead making, and computer literacy. Roughly 60% of women who graduated from skills programs have been able to turn the knowledge and skills acquired into practice by starting their own business, and others have been employed by small business owners in their counties. Most of the women utilizing their skills have reported improved income and nutrition at their household level. Women have acquired some degree of financial independence, which gives them the ability to make informed choices about their lives.
A powerful part of the reintegration support was seeing that women with lived experience of fistula can be powerful ambassadors to help identify and support other women with fistula from their communities. These fistula survivors are also effective advocates in mobilizing their communities around treatment and prevention messages and health-seeking behaviors. Voices of Hope and Action: A Fistula Survivors Movement has started with WADADIA, whose aim is to train and empower women with lived experience of fistula to be able to advocate for improved access to sexual and reproductive health services and to create more visibility and awareness of the particular needs of this population.
Finally, Male Advocacy Groups were created so men could be better informed to talk with other men in their communities about fistula, about the importance of supporting their partners with this condition, and about preventing fistula by encouraging women to go to the health center or hospital to give birth with a skilled birth attendant instead of at home in the village as has long been the tradition. Involving the husband and other male family members in the fistula survivor’s treatment also helped improve adherence to the post repair instructions such as abstaining from sexual intercourse during the recovery period.