DOI: 10.5061/dryad.dncjsxm2p
title: Knowledge, experiences, and practices of women affected by female genital schistosomiasis in rural Madagascar

description: 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. 
description: 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. 
description: 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.