Qualitative research, search for the assumed

I am a master student from Development Management engaged in an established research approaching Female Genital Schistosomiasis (FGS, also called Genital Bilharzia), done by Bright in the Ugu District, South Africa (https://brightresearch.org). Bilharzia is tropical water borne disease, affecting people through skin contact with contaminated water. Its most troublesome for the vulnerable population, especially located in rural areas. This is because they have less access to safe water and will be dependent on their river’s in times of water shortages (e.g.). Additionally, young ones (mostly boys) are known to swim in the rivers and lakes, that is hosting the Schistosoma parasite. Today, there are an estimated number of 200 million people at risk world-wide, where 90% of these people live in sub-Saharan Africa. The medication towards this disease is called Praziquantel, and is given according to weight (UNAIDS, 2019; Bruun & Aagaard-Hansen, 2008).

The research done on FGS so far has mostly been conducted within medical and biological science. Only a few studies have been done within social sciences, thus mostly in public health. Hence, minimal research has been aimed towards the health care system, the health professionals understanding of the disease or even the (female) patients themselves. My main task is to visit local clinics to develop an understanding of their health personnel’s relation to FGS (Genital Bilharzia). So far, I haven't met anyone outside of Bright Research, who has seen the connection between (urological) Bilharzia and genital issues. 

It did not take long before I reached an approximate consensus, both amongst professional nurses at local clinics through formal and informal conversations, and through participative observations; and amongst people in private spheres while having unformal conversations, talking about the reason why I am visiting South Africa. Although there is a difference in the individual's level of knowledge depending on their profession, experience and interests. Most people know the term Bilharzia (or schenene in isiZulu), and associate it with young boys; one has to swim in the rivers or dams to be infected and expose your private parts to the water or drink it. The disease is identified when there is blood in the urine. The patient will then contact the clinics, and the clinic will pass the urine forward to a lab for testing. If there is proof of Bilharzia, the patient will get the medication according to weight. The issue is minor compared to other visible epidemics such as HIV or TB (tuberculosis), and people don’t seem to think much about it.

What the researchers at Bright knows, is that you don’t have to have blood in urine to be infected. This disease may have other locations within the body than just urological tracs. And in this geographically endemic area, it usually affects women in another way than men. It rather tends to locate in the genital tract where it is not visible. That is when we call it Female Genital Schistosomiasis. Unfortunately, the signs of FGS resembles Sexual Transmitted Infections (STIs) (Norseth et al, 2014). Therefore, many women will get treatment for STIs instead of Bilharzia. Hence there are worryingly many girls living with this disease without ever knowing about it. This condition will eventually cause irreversible damage to the genital tracts as well as infertility. At the same time, the genital issues of women can lead to social issues like stigma and embracement, because such issues is highly associated with sexual immorality (UNAIDS, 2019; Bruun & Aagaard-Hansen, 2008).

I hope the information I have gathered has been helpful for Bright and their research in the future, as my experience is that there is still much left to gain in this part of the research field. A next step can be to involve health professionals, including community health workers, in the spread of knowledge. Hence, engage workshops and training to develop a broader understanding of Bilharzia, hence Female Genital Schistosomiasis. In this process, one should get an understanding of how the health system works in rural areas.

Sincerely

Ingvild Sommerfelt 

References: 

Bright (unknown year). http://brightresearch.org

Bruun, B. & Aagaards-Hansen, J. (2008): The social context of schistosomiasis and tis control – an introduction and annotated bibliography. Switzerland: Special Programme for Research & Training in Tropical Diseases (TDR) sponsored by UNICEF/UNDP/World Bank/ World Health Organisations 

Norseth, H. M., Ndhlovu, P. D., Kleppa, E., Randrianasolo, B. S., Jourdan, P. M., Roald, B., Holmen, S. D., Gundersen, S. G., Bagratee, J., Onsrud, M. & Kjetland, E. F. (2014): The Colposcopic Atlad of Schistosomiasis in the Lower Female Genital Tract Based on Studies in Malawi, Zimbabwe, Madagaskar and South Africa. PLOS Neglected Tropical Diseases Volume 8 Issue 11 e3229.

UNAIDS, World Health Organization (2019). No More Neglect. Female Genital Schistosomiasis and HIV. Integrating Reproductive Health Interventions to Improve Women's Lives. Geneva, Switzerland; 2019.