“ We know about schistosomiasis but we know nothing about FGS”: A qualitative assessment of knowledge gaps about female genital schistosomiasis among communities living in Schistosoma haematobium endemic districts of Zanzibar and Northwestern Tanzania

Abstract

Background

Schistosoma haematobium causes urogenital schistosomiasis and is widely distributed in Tanzania. In girls and women, the parasite can cause Female Genital Schistosomiasis (FGS), a gynecological manifestation of schistosomiasis that is highly neglected and overlooked by public health professionals and policy makers. This study explored community members’ knowledge, attitudes and perceptions (KAP) on and health seeking behavior for FGS.

Methods/Principal findings

Using qualitative research methods—including 40 Focus Group Discussions (FGDs) and 37 Key Informant Interviews (KIIs)—we collected data from 414 participants (Males n = 204 [49.3%] and Females n = 210 [50.7%]). The study engaged 153 participants from Zanzibar and 261 participants from northwestern Tanzania and was conducted in twelve (12) purposively selected districts (7 districts in Zanzibar and 5 districts in northwestern Tanzania). Most participants were aware of urogenital schistosomiasis. Children were reported as the most affected group and blood in urine was noted as a common symptom especially in boys. Adults were also noted as a risk group due to their involvement in activities like paddy farming that expose them to infection. Most participants lacked knowledge of FGS and acknowledged having no knowledge that urogenital schistosomiasis can affect the female reproductive system. A number of misconceptions on the symptoms of FGS and how it is transmitted were noted. Adolescent girls and women presenting with FGS related symptoms were reported to be stigmatized, perceived as having a sexually transmitted infection (STI), and sometimes labeled as “prostitutes”. Health seeking behavior for FGS included a combination of traditional medicine, self-treatment and modern medicine.

Conclusion/Significance

Community members living in two very different areas of Tanzania exhibited major, similar gaps in knowledge about FGS. Our data illustrate a critical need for the national control program to integrate public health education about FGS during the implementation of school- and community-based mass drug administration (MDA) programs and the improvement of water, sanitation and hygiene (WASH) facilities.

Author summary

Female Genital Schistosomiasis (FGS) is a disease of the female reproductive system caused by infection with Schistosoma haematobium, a parasite acquired through skin contact with infested water. Although this disease is highly endemic in many parts of sub-Saharan Africa and associated with serious effects on reproductive and mental health, FGS is often neglected by public health professionals and policy makers. The knowledge, attitudes, and practices (KAP) of FGS in endemic communities—important for adherence to intervention measures—are unknown. This study used qualitative research methods to explore community members’ KAP on and health seeking behavior for FGS. Overall, community members knew about urogenital schistosomiasis, but lacked knowledge of FGS. Misconceptions on its cause, symptoms and modes of transmission were common. Our study highlights the need for public health education to address FGS as part of community-based mass drug administration (MDA) programs. In mainland Tanzania, as is in Zanzibar, MDA should be extended to the communities, targeting women and adolescent girls, in order to reduce the burden of FGS. For the long-term impact of these interventions, improving the supply of water, sanitation and hygiene (WASH) is an essential part of the intervention package to end both urogenital schistosomiasis and FGS.