Table 1 Emergent themes and narrative quotations from focus group discussions used to explore schistosomiasis knowledge, attitude and perception of risks, transmission and control measures

Attitude and perceptions on risks and severity

Female FGD: “The most common health problem which disturbs our community is bilharzia, children several times pass blood during urination.”; “We can rank malaria, there is typhoid and UTI and bilharzia disease followed.”

Male FGD: “I suffered from this disease when I was in standard one until I reached standard five. I was suffering from stomach pain and discharging blood in the urine, also pain during urination.”; “I was very sick but by the time when I was 15 years the disease stopped, and I was not urinating blood anymore.”; “I know at the time I was at school we were taught that water from the rivers is safe because they are flowing water because they flow with the bacteria in it. We were taught that any flowing water is safe.”

Knowledge on transmission

Female FGD: “For us women, when we urinate, we use to squat so when an infected person has urinated and another goes to squat and urinate there, she may acquire bilharzia because the bacteria have steam which enables them to come up to you and can be transmitted that way.”; “Bilharzias can be caused by sexual intercourse. If one partner has it, he/she can transmit to the other.”

Male FGD: “In the past schistosomiasis was spreading through clans.”; “If I have schistosomiasis and I have a wife, when I give birth to children, they will surely have it, that's how it was. When you give birth to the children, after they have grown up they will start urinating blood because I had it. If the father has it then even the children must have.”; “You would find someone is eating food with too much salt, then you would find he is acquiring that disease.”

Treatment-seeking behaviour

Female FGD: “Many people don’t know that bilharzia can be treated in the hospital so they use traditional medicines.”; “In the programme of distributing medicines at schools, it is until the parents are educated about these medicines, because some of the parents refuse and complain that the children will die. If they will be educated, the system will be continuous.”

Male FGD: “Some children who have been given tablets without being tested and maybe had allergy and the drug severely affected them, while others are losing consciousness, others get this rashes and this causes parents to prevent their children to go to school when they hear that pupils will be given tablets.”; “Adults are not included in free drugs distribution.”

Control

Female FGD: “There isn’t any way for preventing bilharzia so that you won't acquire it again, only the medicine will help prevent that disease. I don't see any other way simply because if we could have done something before then we wouldn't be suffering from bilharzia.”

Male KII: “I think that the best way is toilets. This way will also protect us from so many things, and it will be treatment for curing many diseases affecting the stomach. For that reason, I support this method, in fact it would be the first of all from other methods.”; “In order to eliminate schistosomiasis, government must construct water infrastructure to reduce the number of people who are going to the lake.”

Self-regulation and responsibility

Male FGD: “For the side of farmers, I am asking government to think and look to minimise the price of those equipment which protect people from acquiring bilharzia. For example, as I am speaking if you come to Moshi and enquire. I should wear long gloves and other things. I went to the agriculture inputs shop and found those waterproof gumboots which their size reach here and are tight, and that raincoat which is made of plastic to prevent water penetration, and they told me total price is 360,000 shillings. I have five youths, including me we are six, how can I afford that cost to protect ourselves from bilharzia.”

Female FGD: “I can contribute 5000 shillings per month for water service.”; “According to my financial capacity I can contribute 3000 shillings per month.”