“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) and with improvement of water, sanitation and hygiene (WASH) facilities.

Knowledge, experiences, and practices of women affected by female genital schistosomiasis in rural Madagascar: A qualitative study on disease perception, health impairment and social impact

“…Sexual transmission was considered another pathway for infection. These concepts are in line with knowledge among lay people and health professionals in Tanzania and Ghana [ 25 , 26 ].…”

“…There are a few studies addressing knowledge and awareness of FGS among health workers and community members in Sub-Saharan. Available studies have been conducted in Ghana and Tanzania [ 25 , 26 , 40 ].…”

“…Studies on FGS in Ghana and Tanzania have pointed out that knowledge about FGS in the general population and among health workers is low and misconceptions are common [ 25 , 26 ]. Hitherto, knowledge, experiences and practices of women with FGS have received little or no attention.…”

The parasitology of female genital schistosomiasis

“…The WHO considered it important that this emphasis be made, owing to reports that deposition of S. haematobium eggs in the genital tract induce lesions which cause severe complications in females such as increased risk of HIV infection ( Feldmeier et al., 1994 ; Downs et al., 2011 ; O’Brien et al, 2019 ; Patel et al., 2021 ), gynaecological complications such as infertility, ectopic pregnancy, abortions, and other varied painful and stigmatizing gynaecological symptoms ( WHO, 2009 ; Nour, 2010 ; Gyapong & Theobald, 2015 ). Unfortunately, despite the WHO efforts, awareness of FGS in many endemic countries has not improved, as people in endemic areas, especially health workers, are still grappling with poor knowledge of FGS ( Kukula et al., 2019 ; Mazigo et al., 2021 ).…”

Healthcare Workers’ Low Knowledge of Female Genital Schistosomiasis and Proposed Interventions to Prevent, Control, and Manage the Disease in Zanzibar

“…Despite these indications, FGS has been neglected in both research and policy making circles in Zanzibar. As a result, there is a paucity of research and literature on FGS in Zanzibar [ 20 , 21 ]. One key step towards addressing FGS in Zanzibar and other parts of sub-Saharan Africa is to have trained healthcare workers and diagnostic equipment to manage (diagnose and treat) this disease [ 22 ].…”