“We are just blind there”: institutional invisibility of female genital schistosomiasis in South Africa
- 1Discipline of Public Health Medicine, School of Medicine, College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
- 2Cancer & Infectious Diseases Epidemiology Research Unit (CIDERU), College of Health Sciences, University of KwaZulu-Natal, Durban, South Africa
Abstract
IntroductionFemale Genital Schistosomiasis (FGS) remains severely overlooked within neglected tropical diseases (NTDs), disproportionately affecting women in sub-Saharan Africa (SSA). Despite its high prevalence and association with adverse reproductive health outcomes and increased HIV susceptibility, FGS receives minimal attention in research, policy, and clinical practice. Understanding how FGS is or isn’t prioritised within policy implementation is critical for addressing this gap. Therefore, this study examined how FGS is recognised, prioritised, and rendered visible or invisible within South Africa’s evolving NTD policy and implementation processes across different levels of the health system.MethodsA qualitative approach guided by Institutional Ethnography and Lipsky’s Street-Level Bureaucracy was adopted to map the institutional relations shaping NTD activities and understand how frontline discretion influences the prioritisation of FGS. Thirteen semi-structured interviews were conducted with stakeholders at the national, provincial, district, and facility levels, complemented by non-participant observation during a Communicable Disease Control (CDC) stakeholder meeting. A hybrid (deductive–inductive) approach to thematic analysis was used to examine how policy texts, governance structures, and everyday implementation practices collectively contribute to the marginal positioning of FGS within the NTD Master Plan.ResultsFour interrelated themes showed how FGS invisibility was produced across policy, programme, clinical and data systems. Awareness was uneven and unsupported by pathways for diagnosis, referral and routine care. Although some stakeholders held a view that FGS was included within general schistosomiasis programming, they conceded that it was not explicitly named in the draft Master Plan and lacked a defined mandate, programme ownership, operational guidance and routine indicators. Consequently, even when FGS became visible to individual actors, recognition rarely generated sustained institutional action.DiscussionFemale genital schistosomiasis will become visible when awareness is embedded within a policy framework that mandates action, supported by clinical guidelines that define practice, equipped with approved diagnostic tools that enable identification, and anchored within an institutional home that has the authority and the resources to coordinate a response.
Related
- Knowledge, attitudes, and practices of healthcare professionals on female genital schistosomiasis in the Mabalako health zone, Democratic Republic of the Congo
- “We don’t know schistosomiasis can affect the female reproductive system and increase the risk of HIV”: A mixed-methods analysis reveals gaps in risk factor determinants and health consequences of female genital schistosomiasis in Southern Chad
- Variability of human immunodeficiency virus-1 in the female genital reservoir during genital reactivation of herpes simplex virus type 2
- Receptivity of the human male and female fetal caudal genital ligament to gonadal hormones
- Shifting social norms, behavioural intentions and opposition to female genital mutilation: Effectiveness of layered community interventions in a high prevalence setting in Kenya
BibTeX
@article{dlamini2026just,
title = {{“We are just blind there”: institutional invisibility of female genital schistosomiasis in South Africa}},
author = {Nthabiseng Dlamini and Themba Ginindza and Themba Ginindza and Saloshni Naidoo and Khumbulani Hlongwana and Khumbulani Hlongwana},
journal = {Frontiers in Tropical Diseases},
year = {2026},
month = oct,
doi = {10.3389/fitd.2026.1970431},
url = {https://doi.org/10.3389/fitd.2026.1970431},
note = {CC BY},
}
RIS
TY - JOUR
TI - “We are just blind there”: institutional invisibility of female genital schistosomiasis in South Africa
AU - Nthabiseng Dlamini
AU - Themba Ginindza
AU - Themba Ginindza
AU - Saloshni Naidoo
AU - Khumbulani Hlongwana
AU - Khumbulani Hlongwana
PY - 2026
DA - 2026/10/26
JO - Frontiers in Tropical Diseases
DO - 10.3389/fitd.2026.1970431
UR - https://doi.org/10.3389/fitd.2026.1970431
AB - IntroductionFemale Genital Schistosomiasis (FGS) remains severely overlooked within neglected tropical diseases (NTDs), disproportionately affecting women in sub-Saharan Africa (SSA). Despite its high prevalence and association with adverse reproductive health outcomes and increased HIV susceptibility, FGS receives minimal attention in research, policy, and clinical practice. Understanding how FGS is or isn’t prioritised within policy implementation is critical for addressing this gap. Therefore, this study examined how FGS is recognised, prioritised, and rendered visible or invisible within South Africa’s evolving NTD policy and implementation processes across different levels of the health system.MethodsA qualitative approach guided by Institutional Ethnography and Lipsky’s Street-Level Bureaucracy was adopted to map the institutional relations shaping NTD activities and understand how frontline discretion influences the prioritisation of FGS. Thirteen semi-structured interviews were conducted with stakeholders at the national, provincial, district, and facility levels, complemented by non-participant observation during a Communicable Disease Control (CDC) stakeholder meeting. A hybrid (deductive–inductive) approach to thematic analysis was used to examine how policy texts, governance structures, and everyday implementation practices collectively contribute to the marginal positioning of FGS within the NTD Master Plan.ResultsFour interrelated themes showed how FGS invisibility was produced across policy, programme, clinical and data systems. Awareness was uneven and unsupported by pathways for diagnosis, referral and routine care. Although some stakeholders held a view that FGS was included within general schistosomiasis programming, they conceded that it was not explicitly named in the draft Master Plan and lacked a defined mandate, programme ownership, operational guidance and routine indicators. Consequently, even when FGS became visible to individual actors, recognition rarely generated sustained institutional action.DiscussionFemale genital schistosomiasis will become visible when awareness is embedded within a policy framework that mandates action, supported by clinical guidelines that define practice, equipped with approved diagnostic tools that enable identification, and anchored within an institutional home that has the authority and the resources to coordinate a response.
SN - 2673-7515
ER -