We conducted a cross-sectional qualitative study using focus group discussions (FGDs) [23] and semi-structured key informant interviews (KIIs) [24]. The study was conducted among healthcare workers working in 14 health facilities (7 from Unguja and 7 from Pemba) located in six (6) S. haematobium endemic districts of Zanzibar [25]. Most people in these districts live along and depend on freshwater sources (rivers, marshes, and man-made dams) for domestic and agricultural use.

Using purposive sampling, we recruited 40 healthcare workers to participate in the study (Table 1). The healthcare worker was eligible to participate in the FGD if they were aged ≥18, gave a written and signed informed consent, and consented their views to be audio-recorded. The healthcare worker qualified to be a key informant if they were aged ≥18; were in-charge of the whole facility, department, or unit; gave a written and signed informed consent; and consented their views to be audio-recorded. We set our sample size at four FGDs and 16 KIIs. Prior research indicates that the sample size of two to three FGDs [26] and nine and 24 interviews [27, 28] is sufficient to reach both code and meaning saturation within homogenous groups (Tables 2, 3).

Prior to fieldwork, the principal investigator recruited supervisors and research assistants with a track record of conducting qualitative research and gave them a refresher training. After developing the FGD and KII semi-structured topic guides, they were pre-tested by conducting one FGD and two KIIs and then fine-tuned before being used in the actual fieldwork. Data collection was conducted in February 2021. All discussions and interviews took place when participants were off duty to allow them continue serving their patients. FGDs took about one and half to 2 h, while KIIs took about half an hour to 1 h, and 15 min. They were conducted in Kiswahili, led by a moderator, and digitally recorded with the participant’s written and signed consent. A note taker, who also operated a digital audio recorder, captured key issues that participants discussed about FGS. For KIIs, the interviewer audio-recorded the interview and later made brief notes on key issues that emerged during the interview.

After fieldwork, all audio-recorded FGDs and KIIs were transcribed verbatim. FGD and KII transcripts were analyzed as part of a single dataset. The data were analyzed using both deductive and inductive approaches in five steps [29]. First, drawing on the study objectives and the semi-structured topic guides, the study team developed a codebook with initial deductive codes. Second, the initial codebook was enriched by two social scientists who added inductive codes that they identified inductively by reading a few data transcripts. Third, all transcripts were imported on the NVivo software and coded inductively following the enriched codebook. Fourth, codes were developed into more conceptual categories and themes. Finally, relevant quotes were selected—and translated from Kiswahili to English—to demonstrate the findings.

This study received ethical approvals from the Zanzibar Health Research Ethics Committee (certificate number ZAHREC/03/PR/DEC/2020/29) and Weill Cornell Medicine (certificate number 20-07022381). The study was endorsed by authorities—in the study regions, districts, and shehias—to be conducted in their jurisdictions. The study team adhered to all ethical principles. All participants gave a written consent to participate. Participants’ identities, including their names and names of healthcare facilities where they were working were anonymized. However, since the nature and set up of the focus group compromises guaranteeing full confidentiality and anonymity [30], the study team requested participants to respect the privacy of their colleagues and keep the content of the discussions confidential [30]. For privacy purposes, in this paper, we use code numbers—instead of names—to identify the participants. We have also omitted the names of healthcare facilities for the same purpose.

Overall, most participants had limited or no knowledge of FGS and held varied misconceptions about this disease. Some, however, made educated guesses about certain aspects of FGS by drawing on their knowledge of urogenital schistosomiasis. Only a few participants had heard of and knew about FGS. Since most participants made reference to urogenital schistosomiasis when discussing about FGS, we have summarized their views as Supplementary Material (see Supplementary File S1).

Most participants had never heard of FGS. Instead, they had heard of urogenital schistosomiasis and some had attended patients suffering from this disease.

A few participants had heard of FGS but had never seen a patient suffering from this disease.

Despite being unaware of FGS, most participants made educated guesses and named Schistosoma parasites as its aetiological agent. However, these participants did not know how urogenital schistosomiasis is associated with FGS. Their responses about the aetiology of FGS drew on their knowledge and experience of urogenital schistosomiasis. Some participants explained that, like urogenital schistosomiasis, FGS is transmitted when a person’s skin comes into contact with cercariae-infested freshwater when engaging in such activities as farming, swimming, bathing, and washing clothes and dishes. In one of the discussions, one participant with excellent knowledge of FGS succinctly described its aetiology, development, symptoms, and complications.

A few participants did not know the aetiology of FGS although they knew the aetiology of urogenital schistosomiasis. Other participants confused aetiology with mode of transmission of FGS. They also had misconceptions about its mode of transmission. The key misconception they had was that FGS can be transmitted through sexual activity.

However, some participants in the same FGD, who had knowledge of how FGS is transmitted, addressed this misconception and explained that FGS is transmitted when a person’s skin comes into contact with cercariae-infested freshwater and not otherwise.

Most participants did not know the symptoms of FGS. Instead, while drawing on their knowledge of urogenital schistosomiasis, they made educated guesses about the symptoms of FGS. However, a few participants had excellent knowledge of FGS, particularly its symptoms, including haematuria (blood in urine), abdominal and pelvic pain, dyspareunia, vaginal discharge, and dysuria (painful urination). When asked about what symptoms a woman or a girl suffering from FGS shows, participants responded that:

Although most participants did not know how FGS is associated with other medical conditions, when left untreated, FGS leads to complications including infertility, ectopic pregnancy, and genital ulcers. It also heightens the risk of HIV and Human papillomavirus (HPV) infections. A few participants with knowledge of FGS explained how it is associated with other medical conditions.

Most participants did not know the treatment for FGS. Only a few (all medical doctors, n = 5) knew that praziquantel is the drug used to treat FGS. However, all participants knew that praziquantel is used to treat urogenital schistosomiasis because they had participated in implementing community- and school-based MDA programs in Zanzibar. Since most of them did not know the relationship between FGS and urogenital schistosomiasis, they could not tell if praziquantel is used to treat both diseases.

We asked the participants to propose interventions suitable for raising awareness of FGS among healthcare workers and strengthening healthcare facility case management capacity. Broadly, participants proposed interventions targeting communities and the healthcare system.

Participants proposed two forms of interventions targeting communities. First, they proposed community-based health education to raise people’s awareness and knowledge of the aetiology, symptoms and related complications, mode of transmission, groups of people at risk, and treatment of FGS. This knowledge will reduce the stigmatizing attitudes that people have against women and girls suffering from FGS. More importantly, community-based health education will improve people’s treatment-seeking behavior to seek health services from healthcare facilities. Community-based health education could be delivered to the community members by healthcare workers or community health workers.

Second, participants proposed that since the transmission of FGS is through skin contact with cercariae-infested freshwater, there is need for the government to improve and invest more in water supply, sanitation, and hygiene (WASH). If the improvement and investment in WASH are done simultaneously with other interventions such as community- and school-based MDA programs and improvement of the healthcare system (next subsection), they could enhance the prevention of schistosomiasis including FGS.

Participants proposed three forms of interventions for improving the healthcare system’s capacity to manage FGS. First, they proposed that the government and other stakeholders should organize and fund trainings aiming to improve healthcare workers’ knowledge of FGS.

Second, participants proposed that the government and other stakeholders should work together to ensure the healthcare facilities have medical equipment and supplies for managing FGS. The government must also address the long-standing problem of understaffing by recruiting healthcare workers required at different levels of the healthcare system.

Third, participants proposed integrating FGS, HIV/AIDS, other STIs, and HPV/cervical cancer screening services since most of the symptoms of these diseases are similar. Thus, when a patient presents to the healthcare facility with the symptoms of any of these diseases, they should be screened for all of them. Integration of these services enables the management of cases of different medical conditions at one point.

Despite the strengths of our findings, our study has three limitations. First, the study had more female (n = 35) than male (n = 5) participants. However, this was expected because Zanzibar’s healthcare force is generally dominated by women. Nursing is the most gender-skewed cadre. For instance, there were 1,042 female nurses in 2017 compared to 271 male nurses [40]. Second, we could not verify our participants’ responses and perceived experiences on FGS as these were reported responses. But generally, FGS was a new topic to most participants. Third, this study focused on FGS among women and girls. No question was asked about male genital schistosomiasis (MGS). However, as studies have reported, in areas where urogenital schistosomiasis is endemic, MGS is a potential public health problem. This could be the case in Zanzibar. Despite these limitations, our findings demonstrate that healthcare workers’ limited or lack of knowledge of FGS and lack of diagnostic capacity for managing FGS in the health facilities are the two challenges that require immediate attention if FGS is to be addressed and S. haematobium is fully eliminated in Zanzibar.

Most healthcare workers had limited or no knowledge of FGS and lacked skills for managing it. Healthcare facilities also lacked diagnostic capacity to manage FGS. We recommend offering in-service, competence-based training to healthcare workers to improve their knowledge of and skills for managing FGS. We also recommend equipping the healthcare facilities with diagnostic equipment for managing FGS. However, we recognize that it may take time before all health facilities are fully equipped with all required FGS diagnostic equipment. We therefore propose developing a simple diagnostic algorithm—which combines demographic information, history of exposure to risk environment, and symptoms of FGS—to help healthcare workers screen, identify, and refer FGS cases to the healthcare facilities that have the capacity to manage this disease. Finally, since FGS, HIV, and cervical cancer have serious sexual and reproductive health and rights consequences for women and girls, we follow the footsteps of other researchers [8] to recommend integrating prevention and control measures of these diseases.