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

Abstract

Background Female genital schistosomiasis (FGS) is a neglected manifestation of urogenital schistosomiasis caused by S. haematobium. The disease presents with symptoms such as pelvic pain, vaginal discharge and bleeding and menstruation disorders, and might lead to infertility and pregnancy complications. The perspectives of women with FGS have not been studied systematically. The aim of the study was to understand knowledge, experiences, and practices of women with FGS. Methods We performed a qualitative study with seventy-six women diagnosed of having FGS, in the Ambanja district in Northwest Madagascar. Data collection was either through focus group discussion (N = 60) or in an individual semi-structured interview (N = 16). FGS was diagnosed by colposcopy. The data was analysed using Mayring´s qualitative content analysis. Results Knowledge on how the disease is acquired varied and ideas on prevention remained vague. Patients suffered from vaginal discharge and pelvic complaints. Some women expressed unbearable pain during sexual intercourse and compared their pain to an open wound being touched. FGS considerably impaired women´s daily activities and their quality of life. Infertility led to resignation and despair, conflicts with the partner and to social exclusion from the community. Women fearing to sexually transmit FGS refrained from partnership and sexual relations. Many women with FGS reported stigmatisation. A coping strategy was to share strain with other women having similar complaints. However, concealing FGS was a common behaviour which led to social isolation and delayed health care seeking. Conclusions Our study underlines that FGS has an important impact on the sexual health of women and on their social life in the community. Our results highlight the importance of providing adequate health education and structural interventions, such as the supply of water and the provision of sanitation measures. Further, correct diagnosis and treatment of FGS in adolescent girls and women should be available in all S. haematobium-endemic areas. Trial registration The qualitative study was embedded in a randomised controlled trial (RCT) in which two doses of praziquantel were compared (https://clinicaltrials.gov/ct2/show/NCT04115072).

Awareness and knowledge of female genital schistosomiasis in a population with high endemicity: a cross-sectional study in Madagascar

“…Finally, we report that in both groups, the most common sources of FGS knowledge were peers: other HCWs among HCWs and family members among women. Our main findings are aligned with existing literature from other endemic countries ( Kukula et al, 2019 ; Mazigo et al, 2021 , 2022b ) and with an exploratory and qualitative study conducted in Madagascar in 2022, on 76 women in the Ambanja district ( Schuster et al, 2022 ).…”

Profiling the knowledge of female medical/para-medical students, and expertise of health care professionals on female genital schistosomiasis in Anambra, South Eastern Nigeria

“…However, despite the fact that FGS affects about 56 million women and girls in Africa, with about 20 to 150 million females estimated to be at risk, the disease remains largely neglected [ 16 ]. This is partly because the clinical manifestations are often misdiagnosed and confused with those of other sexually transmitted infections (STIs) [ 13 ], which in most cases do not only lead to undertreatment of genuine FGS cases but also stigmatization, mental stress, social exclusion and impaired life quality among young females who were wrongly misdiagnosed to have STIs [ 13 , 15 , 36 ]. Efforts targeted at addressing this capacity gap, most especially among healthcare professionals are emerging, for example with the FAST package implemented in Ghana and Madagascar [ 37 ] and other capacity-building workshops organized by Bridges to Development [ 38 ].…”

Knowledge and management of female genital schistosomiasis in sub-Saharan Africa: A scoping review protocol

“… 24 , 35 , 36 , 37 Because of lack of awareness among affected communities and the insufficient expertise and understanding among medical professionals, FGS is an underreported, misdiagnosed and untreated medical condition. 35 , 38 , 39 The FGS menace cannot be adequately addressed without adequately equipping different cadres of healthcare workers with the knowledge and tools to diagnose and manage the disease. 24 , 25 , 40 , 41 Also, prevention and control of FGS are possible through awareness creation that will enhance early reporting, detection, treatment and chemoprophylaxis from an early age and continue throughout life.…”