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.

Methods: We performed a qualitative study in the Ambanja district in Northwest Madagascar. FGS was diagnosed by colposcopy. Seventy-six women with FGS participated either in a focus group discussion (N=60) or in an individual semi-structured interview (N= 16). The data were analysed using Mayring´s qualitative content analysis. The aim of the study was to understand knowledge, experiences, and practices of women with FGS.

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. 

The interviewers carried out semistructured interviews (SSI) and focus groups discussions (FGD) in the villages Antsakoamanondro, Anjavimilay and Ankazokony located in the Ambanja district. The interviews took place in a room of the school or in a communal house in which privacy was guaranteed. No other persons were allowed to attend the interview. Interviewers captured non-verbal communication through written notes in a memo booklet. SSI and FGD were audio recorded. We did not video record to avoid intimidation. Sociodemographic information was retrieved from the corresponding information from the RCT database. The authors revised the interview guide based on the experiences with the first five SSI and the first FGD. SSI and FGD were carried out between the 10th and the 17th of April 2020 in a window of opportunity when COVID incidence in the region was low. Due to time constraints in the context of COVID-19, we carried out in depth data analysis only when all interviews where completed. Therefore, saturation of the data could not be checked. We avoided respondent validation (member checking) of the transcripts to prevent social desirability bias.

After transcription and translation, two authors validated the translated transcripts by comparing them with the audio recordings. Systematic differences between FGD and SSI where not noted, thus both data sources were analysed jointly. Rules to define coding and context units were developed based on the qualitative content analysis: inductive categories were built thematically by paraphrasing and generalising coding units, coding units were then attributed to the deductive categories knowledge, attitudes and practice. Then the text material was reduced in a two-step process into main and secondary categories. The coding tree was built in an iterative manner through the analysis of 20% of the material (3 SSI and 4 FGD). Intercoder differences were brought together through discussions. The iterative adaptation of the coding tree was finalised after the analysis of another 15% of the material (2 SSI and 3 FGD, Figure 1). Two authors carried out category-based analysis of the remaining interviews. 

Qualitative data were analysed with Microsoft Excel (2010) using the methodological approach in Figure 1. Methods and analysis were performed based on the COREQ recommendations for standardised reporting of qualitative research (39). Statistical analysis of the sociodemographic data was performed using SPSS (Version 16.0; SPSS Inc, Chicago, Illinois) since data did not follow normal distribution median and range were calculated.