Perception of Schistosomiasis transmission.

Children and adults often identified “the river,” generic organisms, bacteria, small frogs, blood-sucking worms, crabs, dirt, other people’s urine, with few people reporting snails as part of the schistosomiasis transmission cycle. Young children often reported that leeches and small frogs caused kichocho. Older boys, many with previous experience of kichocho symptoms, reported receiving information about disease transmission from doctors, friends, or someone at school. An older male student said, “We got this disease and when we went to hospital the doctor educated us about this so we can prevent it in ourselves.” (GD_K1). Despite this, most boys had a poor understanding about disease transmission. Children described several widespread myths about kichocho transmission. An older student said, “Kichocho is a disease that is transmitted if someone has gone to toilet and another person who doesn’t have kichocho steps there bare feet.” (GD_K3). Another older girl also reported, “Sometimes one may take water for brushing the teeth and when you gargle with the water there are organisms that will get into you… that’s how people get kichocho.” (GD_U1). Many teachers reported that they had limited knowledge of kichocho because there was only a small section in local science books. Teachers lacked a standardized, detailed syllabus to teach children. Only a couple of teachers had accurate knowledge about disease transmission, one reported, “… you will get kichocho from organisms which live in snails. They penetrate through a person’s skin especially when you enter the water.” (Int_D4). Parents knew the least about the transmission and complications of disease. A couple of parents told us that kichocho could be transmitted man to woman during sexual intercourse. A parent said, “…the transmission can be between husband and wife, you know.” (Int_K4). Overall, people perceived the infection as being insignificant, associated with worms that everyone has at one time or another. A male teacher told us, “Most children get [intestinal] worms. This kichocho worm… I suffered kichocho when I was a boy as well. It is that way.” (Int._C5)

Risky practices of children.

Kichocho was characterized by children and adults as a boy’s rather than a girl’s disease because boys spend more time in contaminated waters. Parents, teachers, and community leaders identified playing, bathing, fishing, and other water activities as risky behaviors of boys. A teacher reported, “Small boys go there [to the river] with their parent…and others follow their friends in groups because they are told by their parent to go and bath at the river so they should not spoil water at home. Water is very little and difficult to get….boys will bath for two hours or more in the river.” (Int_K3). A younger boy reported, “When we go to the river it is fun! On Sunday there is no tap water so if you want to wash school uniforms you have to go there. When you go there you will pretend to put the clothes in the water but you are there to have fun in the water.” (GD_M2).

Most adults and some children associated the act of urinating in the river as a behavior that puts others at risk for disease. They described boys as urinating in the river more frequently than girls. Boys also told us that they urinated in the river, ponds, and fields. An older boy reported, “Boys don’t like to urinate in the house. They urinate everywhere… even in the bushes. Men aren’t shy. Men will urinate anywhere. Especially the young ones, they will urinate in the water, whereas an elder hides when finding a place to urinate.” (GD_K2). Parents in every community acknowledged that boys urinate everywhere. A parent reported, “When a boy is at home he uses the toilet, but if he is somewhere else he will urinate anywhere. I have been through all that. When I was a child I urinated in the river and everywhere.” (Int_D3).

Most adults reported that girls engage in fewer risky behaviors than boys. Teachers and parents told us that girls play in the river like boys until the age of 6 or 7 at which time they are separated from activities with boys, in line with their Muslim culture. Most risky activities were associated with domestic chores such as washing clothes and dishes as well as carrying water. An older girl said, “…girls go swimming, wash clothes and dishes [at the river] and take water home for domestic chores.” (GD_C2). But another older girl told us that girls are not at risk for kichocho, “They [girls] don’t void blood. They don’t get kichocho.” (GD_K9). Most adults, across all communities, described girls as using a toilet when urinating at home and urinating in the field when the need to urinate is urgent. A teacher told us, “Girls urinate at their home and fields, very rarely in the rivers.” (Int_C2). Yet, some adults believed that girls do urinate in the river. A community leader told us that girls do urinate in the river, “If girls are in the river they will urinate there.” (Int_M3). A young girl also told us, “When we go to wash our clothes we urinate in the river.” (GD_U2). An older student also reported, “Girls are different from boys. They may be a little shy, but they do urinate, but not like boys. Girls will hide in the water but boys will pour it openly.” (GD_M1).

Symptoms of kichocho.

Most children and adults reported that kichocho symptoms were typically bloody urine with pain. An older boy reported, “The urine will not come out and finally you will see blood coming out from the private part. You will get severe pain and at last there is a pus discharge and blood at the end when you finish.” (GD_K1). A parent with sons said, “For kichocho there is severe pain at the kidney site. Sometimes urine may be leaking, itching, then bleeding. Signs are the same to boys and men but when the adult is sick he will go to the hospital himself. A boy will not say until the problem becomes chronic.” (Int_M4).

Some adults and children reported uncertainty as to whether symptoms were different between adults and children and boys and girls. A teacher said, “I am not sure if they [symptoms] are different between children and adults. I think they are all the same. I am not sure. I don’t know.” (Int_C4). A community member also reported, “I think you feel pain at the urinary bladder. Also [there will be] blood in the urine because the disease is the same. The symptoms will differ according to the different nature of the male and female. Therefore, I don’t know which symptoms are for male and which symptoms are for female.” (FGD_D1). Adults and children failed to identify kichocho symptoms for girls and women. One parent reported, “To them [girls] I think it would be very difficult to know [if she has kichocho]. For us, it is easy because we see it. However, for girls how would they know? Maybe when they wash their underwear and see blood they will know.” (Int_U3).

Community members we interviewed also provided a variety of other explanations for blood in the urine that could lead to delayed health-seeking behaviors. Many adults reported that gonorrhea, syphilis, and other sexually transmitted diseases, cancer, childbirth, and menstruation could cause blood in the urine. One man said, “I think according to what we have heard, even a sexual transmitted disease like syphilis may cause blood in the urine.” (Int_Z1). In addition, parents, community members, and teachers reported that heavy exercise and exertion due to hard work could cause blood and pus in the urine. A teacher said, “Sometimes strenuous exercises can cause blood in the urine. Don’t be surprised when a football player tells you, I have blood in the urine. I had this experience once.” (Int_MK1). A couple of parents and community members attributed blood in the urine to witchcraft: “You can bleed if someone has done bad witch to you.” (Int_MW2). Several community members and parents and even a teacher attributed blood in the urine to eating local chilies.

Health-seeking behaviors and treatment.

Many teachers, parents, and community members reported that while some people self-treat, most seek care at a hospital or clinic. Children were often reluctant to tell their parents they had kichocho. Costs of treatment varied, and even when free, people reported putting off seeking care because of transportation costs. Parents reported that they took children to local clinics only to find no available drugs for treatment. A referral to another facility, incurring more transportation costs, was a barrier to seeking treatment. A few parents, community members, and teachers described home remedies and traditional healers as first line care before going to seek care at a hospital for treating kichocho. Home remedies included preparing teas from the root of a plant or drinking copious amounts of water. A teacher reported, “My relative used hospital treatment but there are some kind of roots which are used by people….there are various roots for many diseases and kichocho can be treated by roots as well. There is one which is called “mkaanga uchawi” (frying a witch) or “mchafufu” some people call it a “tetracycline tree” because its fruits has two colors …red and black…..they boil the root and mix it with some herbs and drink the soup…it can be taken three times a day …it depends.” (Int_D4). A parent told us, “I had painful urine and blood. I had signs like people were saying. I went to three traditional healers but it was useless…until I went to hospital and got better.” (Int_K2).

Mass drug administration in schools was often reported as the primary way children get treatment for kichocho: “Children get drugs for free when health workers from Kichocho Program come to school.” Parents described various experiences when seeking treatment for their children with kichocho through other avenues. A community leader told us, “One has to go to hospital because sometimes local treatment does not help. You can be cured and get sick again so is better to be treated in hospital.” (FGD_D1). Another parent said, “There was a time the drugs were free…now because of new technology one can go to private hospitals which treat Kichocho… you pay.” (Int_M6). There were many ideas about the costs of treating kichocho. Some adults and children reported that treatment was free. A parent said, “We got treatment for free…we did not pay. It was good.” (Int_M7). But many others reported various treatment-associated costs. A teacher reported, “The time I went [to the hospital] I got medicine freely. But transport cost from home to the center: going and returning.” (Int_Z2). A student reported, “My friend was sick and we took him to the hospital where they gave him one tablet and he was asked to pay 400 shillings…one tablet.” (GD_K1). A teacher also told us, “We buy [drugs for kichocho] in town at a private pharmacy. I remember a tablet cost about five hundred shillings.” (Int_C3).

Few adults knew where to obtain free treatment for kichocho. A teacher reported, “I have heard that there is a special hospital for kichocho at Mianzini. I am not sure about the availability of drugs or if you have to buy or not.” (Int_D2). Parents also expressed concern over having to pay transport even if treatment was free: “There are direct or indirect costs. An example of direct [cost] is buying tablets in private pharmacies or hospitals. An indirect [cost] is getting the tablets for free but paying bus fee to town.” (Int_Z1).

Children’s role models.

Many adults identified parents, Madrassa (Koran school) teachers, and schoolteachers as role models for younger and older children. A parent said, “Most of the time they [children] are with us. When you do something they follow. If it is good or bad…if you use abusive words they will do also. Girls follow the habit of their mothers and boys follow the habits of their fathers.” (Int_D4). Some parents reported that they were the most important role models for their children but that it was very challenging and they needed help to change their children’s behavior. “We have been trying very hard without success. Maybe you can support us…we cannot make it happen,” said a parent. (Int_C2).

Many teachers reported that the parent is a critical role model for their child. Teachers also told us that support is needed to teach parents how to prevent their children from getting kichocho. A teacher told us, “First it is the parents that are important. They need to get knowledge. A child should be educated about rivers at home so he can change behavior. We can also use the Sheha [community leader] committee members. They can fight against kichocho because they are respected by the community.” (Int_M8). Many other adults and also children acknowledged the role of a child’s peers in influencing their behaviors. An older boy from Kilombero shehia reported, “The young ones [boys] they follow us. If they see us go to the river they will follow…even for fishing. So after a time he will get used to that and continue going to the river. If you say to him to stop going he will say…but you go. Why are you stopping me to go?” (GD_K3). A parent told us, “A child will easily follow the behavior of another child. When he sees him doing something he will do the same.” (Int_M4). Additionally, it was acknowledged by most children that older boys are often the most influential role models, both positively and negatively, on the behaviors of younger boys.

Stopping urination in freshwater sources.

Most adults and some children recognized the difficulty of extinguishing the behavior of urinating in the ponds and streams. It was seen as a private behavior and often associated with urgent need. A young student, when asked why he plays and sometimes urinates in the river when he knows not to reported, “I am driven because of “ubilisi” (the devil).” (GD_M2). Most adults interviewed suggested fear and punishment to prevent children from urinating in the river even though they themselves had been forbidden to go in the river and did so anyway when young. A parent told us, “It is important to frighten them [children]. If you urinate in the river you will create and get diseases. If you urinate in the bush the devils will see you and you will be sick. We have to educate them to use toilet all the time even if they are outside.” (Int_M2). A community member reported, “I think it’s simple to talk about but it’s difficult to change [behavior] because this boy in the bush, no one can see him [urinate].” (FGD_D1). A teacher reported that a comprehensive educational effort was needed to change behavior, “I think children need more health education. There should be street banners, more books on Kichocho in schools, and community mobilization like in malaria campaigns.” (Int_C2). Another teacher suggested going beyond lectures and encouraging more engaging activities for children, “We can make small groups and teach them to prepare drama and role play to educate them about the effect of playing in the river. This would educate them not to urinate and bath in the river and ponds…..for children, the drama and role plays retain in their mind rather than words…..and this will help to change their behavior.” (Int_D3).

Children and adults across all groups interviewed suggested several structural interventions associated with changing the environment in order to facilitate behavior change in children. One teacher suggested, “We should build toilets. The community should be educated about toilet building especially in public areas like schools, so children can learn toilet-using behavior. But we have to have toilets.” (Int_D4). A secondary student said, “People can get together in a meeting and decide to dig a latrine and a well so we can get water which mixes with soap easily and use it to wash our clothes. They [children] won’t go to the river.” (GD_K2). Another secondary student suggested creating special policies, “In our communities we do not use toilets. You should have a policy that everyone has to build a toilet in their home. It would help avoid using the water in the river.” (GD_C2).

Preventing kichocho in children.

Community leaders, teachers, as well as students often described the need for community members to work together against kichocho. All groups of adults as well as students identified two major channels for reaching children not attending school. The first was reaching out and educating all parents in the community and the second was through Madrassa schools. One older student reported, “This problem [kichocho] is affecting us so much that the Ministry of Health has to prepare a syllabus for us in schools.” (GD_C2). Another student suggested, “I think we have to be friends with them [children] not to scold them. We should find the technique of making them to forget the river and to remind them to go to school and Madrassa. That would be better.” (GD_K3).

Teachers provided a variety of ideas for preventing kichocho. One teacher said, “The first thing teachers need is training to provide knowledge to the children about everything about kichocho.” (Int_W2). Another teacher said, “We need to create a syllabus concerning health and kichocho.” (Int_W1). Teachers also expressed a need for children to have alternative options for spending their spare time and playing. A teacher told us, “We should organize interesting sports like football for students. Toilets and latrines should be built and children should be punished when they play in the river.” (Int_MK1). Parents also told us that children needed play options. One parent said, “I think we should build playgrounds near the river so children will be attracted to play in the grounds instead of the river.” (Int_C4). A number of community leaders suggested improving water sources and increasing access to clean water for their community. A community leader told us, “We can prevent kichocho by building as many wells as possible for clean water.” (FGD_C1).