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

Angela Schuster, Bodo Sahondra Randrianasolo, Oliva Onintsoa Rabozakandraina, Charles Emile Ramarokoto, Dorthe Brønnum, Hermann Feldmeier, Angela Schuster, Bodo Sahondra Randrianasolo, Oliva Onintsoa Rabozakandraina, Charles Emile Ramarokoto, Dorthe Brønnum, Hermann Feldmeier

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://ichgcp.net/clinical-trials-registry/NCT04115072).

Conflict of interest statement

The authors have declared that not competing interests exist.

Copyright: © 2022 Schuster et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Figures

Fig 1. Map of the study area,…
Fig 1. Map of the study area, made with Natural Earth (www.naturalearthdata.com).
Fig 2. Flow chart of the methodological…
Fig 2. Flow chart of the methodological approach.
Fig 3. Inductive and deductive main categories…
Fig 3. Inductive and deductive main categories and subcategories.
Fig 4. Key results on knowledge experience…
Fig 4. Key results on knowledge experience and practice among women affected by FGS.

References

    1. Nour NM. Schistosomiasis: health effects on women. Rev Obstet Gynecol. 2010;3(1):28–32.
    1. Hotez PJ, Fenwick A. Schistosomiasis in Africa: an emerging tragedy in our new global health decade. PLoS Negl Trop Dis. 2009. Sep 29;3(9):e485. doi: 10.1371/journal.pntd.0000485
    1. Christinet V, Lazdins-Helds JK, Stothard JR, Reinhard-Rupp J. Female genital schistosomiasis (FGS): from case reports to a call for concerted action against this neglected gynaecological disease. International Journal for Parasitology [Internet]. 2016. Jun 1 [cited 2022 Jan 5];46(7):395–404. Available from: . doi: 10.1016/j.ijpara.2016.02.006
    1. Downs JA, Mguta C, Kaatano GM, Mitchell KB, Bang H, Simplice H, et al.. Urogenital schistosomiasis in women of reproductive age in Tanzania’s Lake Victoria region. Am J Trop Med Hyg. 2011. Mar;84(3):364–9. doi: 10.4269/ajtmh.2011.10-0585
    1. Leutscher P, Raharisolo C, Pecarrere JL, Ravaoalimalala VE, Serieye J, Rasendramino M, et al.. Schistosoma haematobium induced lesions in the female genital tract in a village in Madagascar. Acta Trop. 1997. Jun 24;66(1):27–33. doi: 10.1016/s0001-706x(97)00673-6
    1. Swai B, Poggensee G, Mtweve S, Krantz I. Female genital schistosomiasis as an evidence of a neglected cause for reproductive ill-health: a retrospective histopathological study from Tanzania. BMC Infectious Diseases [Internet]. 2006. Aug 23 [cited 2022 Jan 5];6(1):134. Available from: doi: 10.1186/1471-2334-6-134
    1. Renaud G, Devidas A, Develoux M, Lamothe F, Bianchi G. Prevalence of vaginal schistosomiasis caused by Schistosoma haematobium in an endemic village in Niger. Trans R Soc Trop Med Hyg. 1989. Dec;83(6):797. doi: 10.1016/0035-9203(89)90333-7
    1. Poggensee G, Kiwelu I, Weger V, Göppner D, Diedrich T, Krantz I, et al.. Female genital schistosomiasis of the lower genital tract: prevalence and disease-associated morbidity in northern Tanzania. J Infect Dis. 2000. Mar;181(3):1210–3. doi: 10.1086/315345
    1. Kjetland EF, Poggensee G, Helling-Giese G, Richter J, Sjaastad A, Chitsulo L, et al.. Female genital schistosomiasis due to Schistosoma haematobium. Clinical and parasitological findings in women in rural Malawi. Acta Trop. 1996. Dec 30;62(4):239–55. doi: 10.1016/s0001-706x(96)00026-5
    1. Feldmeier H, Krantz I, Poggensee G. Female genital schistosomiasis as a risk-factor for the transmission of HIV. Int J STD AIDS. 1994. Oct;5(5):368–72. doi: 10.1177/095646249400500517
    1. Leutscher P, Ravaoalimalala VE, Raharisolo C, Ramarokoto CE, Rasendramino M, Raobelison A, et al.. Clinical findings in female genital schistosomiasis in Madagascar. Trop Med Int Health. 1998. Apr;3(4):327–32. doi: 10.1046/j.1365-3156.1998.00230.x
    1. Randrianasolo BS, Jourdan PM, Ravoniarimbinina P, Ramarokoto CE, Rakotomanana F, Ravaoalimalala VE, et al.. Gynecological manifestations, histopathological findings, and schistosoma-specific polymerase chain reaction results among women with Schistosoma haematobium infection: a cross-sectional study in Madagascar. J Infect Dis. 2015. Jul 15;212(2):275–84. doi: 10.1093/infdis/jiv035
    1. Masong MC, Wepnje GB, Marlene NT, Gamba V, Mengue MT, Kouokam E, et al.. Female Genital Schistosomiasis (FGS) in Cameroon: A formative epidemiological and socioeconomic investigation in eleven rural fishing communities. PLOS Global Public Health [Internet]. 2021. Oct 20 [cited 2022 Jan 5];1(10):e0000007. Available from: = doi: 10.1371/journal.pgph.0000007
    1. Ramarokoto CE, Kildemoes AO, Randrianasolo BS, Ravoniarimbinina P, Ravaoalimalala VE, Leutscher P, et al.. Eosinophil granule proteins ECP and EPX as markers for a potential early-stage inflammatory lesion in female genital schistosomiasis (FGS). PLoS Negl Trop Dis. 2014. Jul;8(7):e2974. doi: 10.1371/journal.pntd.0002974
    1. Schanz A, Richter J, Beyer I, Baldus SE, Hess AP, Kruessel JS. Genital schistosomiasis as a cause of female sterility and acute abdomen. Fertil Steril. 2010. Apr;93(6):2075.e7–9. doi: 10.1016/j.fertnstert.2009.05.043
    1. Kjetland EF, Leutscher PDC, Ndhlovu PD. A review of female genital schistosomiasis. Trends Parasitol. 2012. Feb;28(2):58–65. doi: 10.1016/j.pt.2011.10.008
    1. Jourdan PM, Holmen SD, Gundersen SG, Roald B, Kjetland EF. HIV target cells in Schistosoma haematobium-infected female genital mucosa. Am J Trop Med Hyg. 2011. Dec;85(6):1060–4. doi: 10.4269/ajtmh.2011.11-0135
    1. Jourdan PM, Randrianasolo BS, Feldmeier H, Chitsulo L, Ravoniarimbinina P, Roald B, et al.. Pathologic mucosal blood vessels in active female genital schistosomiasis: new aspects of a neglected tropical disease. Int J Gynecol Pathol. 2013. Jan;32(1):137–40. doi: 10.1097/PGP.0b013e31824fe327
    1. Helling-Giese G, Sjaastad A, Poggensee G, Kjetland EF, Richter J, Chitsulo L, et al.. Female genital schistosomiasis (FGS): relationship between gynecological and histopathological findings. Acta Trop. 1996. Dec 30;62(4):257–67. doi: 10.1016/s0001-706x(96)00027-7
    1. Helling-Giese G, Kjetland EF, Gundersen SG, Poggensee G, Richter J, Krantz I, et al.. Schistosomiasis in women: manifestations in the upper reproductive tract. Acta Trop. 1996. Dec 30;62(4):225–38. doi: 10.1016/s0001-706x(96)00025-3
    1. Woodall PA, Kramer MR. Schistosomiasis and Infertility in East Africa. Am J Trop Med Hyg. 2018. Apr;98(4):1137–44. doi: 10.4269/ajtmh.17-0280
    1. Sturt AS, Webb EL, Francis SC, Hayes RJ, Bustinduy AL. Beyond the barrier: Female Genital Schistosomiasis as a potential risk factor for HIV-1 acquisition. Acta Trop. 2020. Sep;209:105524. doi: 10.1016/j.actatropica.2020.105524
    1. Aagaard-Hansen J, Chaignat CL. Neglected tropical diseases: equity and social determinants. In: Equity, social determinants and publich health programmes. Geneva: WHO Publisher; 2010.
    1. Hotez PJ. Empowering women and improving female reproductive health through control of neglected tropical diseases. PLoS Negl Trop Dis. 2009. Nov 24;3(11):e559. doi: 10.1371/journal.pntd.0000559
    1. Kukula VA, MacPherson EE, Tsey IH, Stothard JR, Theobald S, Gyapong M. A major hurdle in the elimination of urogenital schistosomiasis revealed: Identifying key gaps in knowledge and understanding of female genital schistosomiasis within communities and local health workers. PLoS Negl Trop Dis. 2019. Mar;13(3):e0007207. doi: 10.1371/journal.pntd.0007207
    1. Mazigo HD, Samson A, Lambert VJ, Kosia AL, Ngoma DD, Murphy R, et al.. ‘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. PLoS Negl Trop Dis. 2021. Sep;15(9):e0009789. doi: 10.1371/journal.pntd.0009789
    1. Grant R, Shoham T. A critical examination of the barriers and social determinants of health impacting the implementation of a national sexual and reproductive health rights curriculum in Madagascar. Reproductive Health Matters [Internet]. 2018. [cited 2022 Jan 5];26(52):62–6. Available from: doi: 10.1080/09688080.2018.1555422
    1. Morris JL, Short S, Robson L, Andriatsihosena MS. Maternal health practices, beliefs and traditions in southeast Madagascar. Afr J Reprod Health. 2014. Sep;18(3):101–17.
    1. Bank World. Overview [Internet]. World Bank. 2020. [cited 2022 Jan 11]. Available from: .
    1. Cole J. Sex and Salvation: Imagining the Future in Madagascar [Internet]. Chicago, IL: University of Chicago Press; 2010. [cited 2022 Jan 11]. 248 p. Available from: .
    1. Jansen KA. ‘Cleaning the womb’: perspectives on fertility control and menstruation among students in Antananarivo, Madagascar. Cult Health Sex. 2021. Sep;23(9):1227–40. doi: 10.1080/13691058.2020.1773539
    1. Norseth HM, Ndhlovu PD, Kleppa E, Randrianasolo BS, Jourdan PM, Roald B, et al.. The colposcopic atlas of schistosomiasis in the lower female genital tract based on studies in Malawi, Zimbabwe, Madagascar and South Africa. PLoS Negl Trop Dis. 2014;8(11):e3229. doi: 10.1371/journal.pntd.0003229
    1. Schuster A, Thielecke M, Raharimanga V, Ramarokoto CE, Rogier C, Krantz I, et al.. High-resolution infrared thermography: a new tool to assess tungiasis-associated inflammation of the skin. Trop Med Health. 2017;45:23. doi: 10.1186/s41182-017-0062-9
    1. Patton MQ. Qualitative Research & Evaluation Methods—Michael Quinn Patton—Google Books [Internet]. Newbury Park: Sage Publications; 1990. [cited 2022 Jan 5]. Available from: .
    1. Fan Y, Zhang S, Li Y, Li Y, Zhang T, Liu W, et al.. Development and psychometric testing of the Knowledge, Attitudes and Practices (KAP) questionnaire among student Tuberculosis (TB) Patients (STBP-KAPQ) in China. BMC Infect Dis. 2018. May 8;18(1):213. doi: 10.1186/s12879-018-3122-9
    1. Wan TTH, Rav-Marathe K, Marathe S. A SYSTEMATIC REVIEW OF KAP-O FRAMEWORK FOR DIABETES. Medical Research Archives [Internet]. 2016. Apr 27 [cited 2022 Jan 5];3(9). Available from: .
    1. Mayring P, Fenzl T. Qualitative Inhaltsanalyse. In: Baur N, Blasius J, editors. Handbuch Methoden der empirischen Sozialforschung [Internet]. Wiesbaden: Springer Fachmedien; 2019. [cited 2022 Jan 5]. p. 633–48. Available from: 10.1007/978-3-658-21308-4_42.
    1. Birt L, Scott S, Cavers D, Campbell C, Walter F. Member Checking: A Tool to Enhance Trustworthiness or Merely a Nod to Validation? Qual Health Res. 2016. Nov;26(13):1802–11. doi: 10.1177/1049732316654870
    1. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007. Dec;19(6):349–57. doi: 10.1093/intqhc/mzm042
    1. Mazigo HD, Samson A, Lambert VJ, Kosia AL, Ngoma DD, Murphy R, et al.. “Female genital schistosomiasis is a sexually transmitted disease”: Gaps in healthcare workers’ knowledge about female genital schistosomiasis in Tanzania. Kamndaya M, editor. PLOS Glob Public Health. 2022. Mar 23;2(3):e0000059.
    1. Sayed S, Marie MA, El-Deeb F, Hasheesh W, Atef R, Sayed S. Impact of seasonal water quality and trophic levels in the distribution of various freshwater snails in four Egyptian governorates. 2015.
    1. Tsai CS, Shepherd BE, Vermund SH. Does douching increase risk for sexually transmitted infections? A prospective study in high-risk adolescents. Am J Obstet Gynecol. 2009. Jan;200(1):38.e1–8. doi: 10.1016/j.ajog.2008.06.026
    1. Simpson T, Merchant J, Grimley DM, Oh MK. Vaginal douching among adolescent and young women: more challenges than progress. J Pediatr Adolesc Gynecol. 2004. Aug;17(4):249–55. doi: 10.1016/j.jpag.2004.05.008
    1. Hilber AM, Francis SC, Chersich M, Scott P, Redmond S, Bender N, et al.. Intravaginal practices, vaginal infections and HIV acquisition: systematic review and meta-analysis. PLoS One. 2010. Feb 9;5(2):e9119. doi: 10.1371/journal.pone.0009119
    1. Rafferty H, Sturt AS, Phiri CR, Webb EL, Mudenda M, Mapani J, et al.. Association between cervical dysplasia and female genital schistosomiasis diagnosed by genital PCR in Zambian women. BMC Infect Dis. 2021. Jul 17;21(1):691. doi: 10.1186/s12879-021-06380-5
    1. Poggensee G, Feldmeier H. Female genital schistosomiasis: facts and hypotheses. Acta Trop. 2001. Jun 22;79(3):193–210. doi: 10.1016/s0001-706x(01)00086-9
    1. Kjetland EF, Kurewa EN, Ndhlovu PD, Midzi N, Gwanzura L, Mason PR, et al.. Female genital schistosomiasis—a differential diagnosis to sexually transmitted disease: genital itch and vaginal discharge as indicators of genital Schistosoma haematobium morbidity in a cross-sectional study in endemic rural Zimbabwe. Trop Med Int Health. 2008. Dec;13(12):1509–17. doi: 10.1111/j.1365-3156.2008.02161.x
    1. Jacobson J, Pantelias A, Williamson M, Kjetland E, Krentel A, Gyapong M, et al.. Addressing a Silent and Neglected Scourge in Sexual and Reproductive Health in Sub-Saharan Africa by Development of Training Competencies to Improve Prevention, Diagnosis, and Treatment of Female Genital Schistosomiasis (FGS) for Health Workers (preprint). 2021.
    1. Lillerud LE, Stuestoel VM, Hoel RE, Rukeba Z, Kjetland EF. Exploring the feasibility and possible efficacy of mass treatment and education of young females as schistosomiasis influences the HIV epidemic. Arch Gynecol Obstet. 2010. Mar;281(3):455–60. doi: 10.1007/s00404-009-1108-y
    1. Maju M, Sharma A, Beeram A, Ostrach B. A colonial legacy of HIV/AIDS, NTD, and STI super-syndemics: Eugenicist foreign aid and intertwined health burdens in Nigeria. Glob Public Health. 2019. Sep;14(9):1221–40. doi: 10.1080/17441692.2019.1582683
    1. Campbell SJ, Stothard JR, O’Halloran F, Sankey D, Durant T, Ombede DE, et al.. Urogenital schistosomiasis and soil-transmitted helminthiasis (STH) in Cameroon: An epidemiological update at Barombi Mbo and Barombi Kotto crater lakes assessing prospects for intensified control interventions. Infect Dis Poverty. 2017. Feb 27;6(1):49. doi: 10.1186/s40249-017-0264-8
    1. Lesshafft H, Schuster A, Reichert F, Talhari S, Ignatius R, Feldmeier H. Knowledge, attitudes, perceptions, and practices regarding cutaneous larva migrans in deprived communities in Manaus, Brazil. J Infect Dev Ctries. 2012. May 14;6(5):422–9. doi: 10.3855/jidc.2122
    1. Skjortnes M, Zachariassen HH. ‘Even with higher education you remain a woman’: a gender perspective on higher education and social change in the Toliara region of Madagascar. Gender and Education [Internet]. 2010. Mar 1 [cited 2022 Jan 5];22(2):193–207. Available from: 10.1080/09540250902749075.
    1. Greil A, McQuillan J, Slauson-Blevins K. The Social Construction of Infertility. Sociology Department, Faculty Publications [Internet]. 2011. Jan 1; Available from: .
    1. Clarke LH, Martin-Matthews A, Matthews R. The Continuity and Discontinuity of the Embodied Self in Infertility*. Canadian Review of Sociology/Revue canadienne de sociologie [Internet]. 2006. [cited 2022 Jan 5];43(1):95–113. Available from: .
    1. Tabong PTN, Adongo PB. Infertility and childlessness: a qualitative study of the experiences of infertile couples in Northern Ghana. BMC Pregnancy Childbirth. 2013. Mar 21;13:72. doi: 10.1186/1471-2393-13-72
    1. Evans R, Becker S. Children caring for parents with HIV and AIDS: Global issues and policy responses [Internet]. Policy Press; 2009. [cited 2022 Jan 5]. 368 p. Available from: .
    1. Weiss MG. Stigma and the social burden of neglected tropical diseases. PLoS Negl Trop Dis. 2008. May 14;2(5):e237. doi: 10.1371/journal.pntd.0000237
    1. Nordberg B, Gabriel EE, Were E, Kaguiri E, Ekström AM, Kågesten A, et al.. Social concerns related to HIV status disclosure and participation in the prevention of mother-to-child transmission of HIV care among pregnant women in Kenya. BMC Pregnancy Childbirth. 2020. Apr 16;20(1):225. doi: 10.1186/s12884-020-02907-x
    1. Pantelic M, Sprague L, Stangl AL. It’s not ‘all in your head’: critical knowledge gaps on internalized HIV stigma and a call for integrating social and structural conceptualizations. BMC Infect Dis. 2019. Mar 5;19(1):210. doi: 10.1186/s12879-019-3704-1
    1. Lee ASD, Cody SL. The Stigma of Sexually Transmitted Infections. Nurs Clin North Am. 2020. Sep;55(3):295–305. doi: 10.1016/j.cnur.2020.05.002
    1. Brody C, Berkowitz RL, Chhoun P, Kaplan KC, Tuot S, Yi S. ‘Feeling clean’: stigma and intravaginal practices among female entertainment workers in Cambodia. BMC Womens Health. 2021. Mar 25;21(1):127. doi: 10.1186/s12905-021-01271-y
    1. Malta M, Bastos FI, Strathdee SA, Cunnigham SD, Pilotto JH, Kerrigan D. Knowledge, perceived stigma, and care-seeking experiences for sexually transmitted infections: a qualitative study from the perspective of public clinic attendees in Rio de Janeiro, Brazil. BMC Public Health [Internet]. 2007. Feb 1 [cited 2022 Feb 1];7(1):18. Available from: 10.1186/1471-2458-7-18.
    1. Graham JL, Giordano TP, Grimes RM, Slomka J, Ross M, Hwang LY. Influence of trust on HIV diagnosis and care practices: a literature review. J Int Assoc Physicians AIDS Care (Chic). 2010. Dec;9(6):346–52. doi: 10.1177/1545109710380461
    1. Østergaard LR. Trust matters: A narrative literature review of the role of trust in health care systems in sub-Saharan Africa. Glob Public Health. 2015. Oct;10(9):1046–59. doi: 10.1080/17441692.2015.1019538
    1. Dierickx S, Coene G, Jarju B, Longman C. Women with infertility complying with and resisting polygyny: an explorative qualitative study in urban Gambia. Reprod Health. 2019. Jul 15;16(1):103. doi: 10.1186/s12978-019-0762-1
    1. Kumar S, Mohanraj R, Rao D, Murray KR, Manhart LE. Positive coping strategies and HIV-related stigma in south India. AIDS Patient Care STDS. 2015. Mar;29(3):157–63. doi: 10.1089/apc.2014.0182
    1. Bruun B, Aagaard-Hansen J. The social context of schistosomiasis and its control. An introduction and annotated bibliography [Internet]. World Health Organization; 2008. [cited 2022 Jun 10]. 227 p. Available from: .
    1. Ackermann L, de K. Social factors that make South African women vulnerable to HIV infection. Health Care Women Int. 2002. Feb;23(2):163–72. doi: 10.1080/073993302753429031
    1. Austin K, Noble M, Mejia M. Gendered vulnerabilities to a neglected disease: A comparative investigation of the effect of women’s legal economic rights and social status on malaria rates. International Journal of Comparative Sociology. 2014. Aug 10;55:204–28.

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