This section will first present the findings from the interviews with the kimeo cutters before we turn to caregivers and their perceptions of kimeo and their experiences with uvulectomy by folk practitioners.
Practitioners
Kimeo symptoms and perceived causes
All of the four kimeo cutters mentioned homa (fever, general weakness/illness) and a persistent cough, often causing lack of sleep, as the main symptoms of kimeo. All four diagnose their patients by observing the uvula and asking patients for symptoms. The practitioners described kimeo as a swollen and elongated uvula. In the early phase of kimeo, the uvula looks like normal skin, but then it “ripens”, and it may become very difficult to eat. This, in their view, is one of the reasons why both adults and children often lose weight when they suffer from kimeo.
Two of the practitioners associated kimeo with hot weather. Abasi explained that he associates kimeo with a dry cough, in contrast to the productive cough that comes with cold weather. He concluded that this is the reason why kimeo is most common in hot places, like the Eastern part of the country and along the coast. Three of the practitioners said that a child cannot be born with kimeo, while Omari said that some children are born with kimeo because their mothers fail to get nutritious food when they are pregnant, and that it could also be caused by a child's DNA.
Three of the kimeo cutters associated kimeo with tuberculosis. Abasi, for example, said that most of his patients have tried all the medicine that hospitals can offer, without getting cured, and that living with kimeo by delaying cutting can be dangerous by leading to additional illnesses: “I have cut many people who are late, and then they look like they have some kind of TB.” Khasim explained that when the uvula swells, it contains microorganisms (wadudu):
Some of those microorganisms will spread and cause illness and some will die. So the problem starts there, and then some can get TB (…). They are unable to spit out (the microorganisms) once it bursts.
Rashidi, when asked how he differentiates between kimeo and tuberculosis, responded in this way:
"Some people run away from the hospital, then we tell them to go back. And some have kimeo, but also other illnesses. Then, we also tell them to go to the hospital."
Kimeo cutters (and other Tanzanians) often use the expression “other illnesses” about HIV/AIDS, and tuberculosis is relatively common among HIV + patients. None of the practitioners mentioned supernatural or personalistic causes of kimeo.
The cutting All four practitioners have several sets of metal forceps which they use for cutting their patients’ uvulas, and they sterilise the equipment in boiling water with herbs. Three reported performing between 10 and 15 uvulectomies per day, while one did only two on average. Three charged TZS 10,000 (approximately USD 4.3), while the fourth, who operates in a semi-rural area, charged less, TZS 7000 (approximately USD 3). After the cutting, the patients gargle water with herbs to help stop the bleeding and to clean the wound. One of the practitioners reported that he prescribes antibiotics (amoxicillin) for adult patients, to be taken for a week after the uvulectomy.
There were some differences between the four concerning what time of the day the cutting could be carried out. Abasi said that he never carries out the cutting after 10 am, because “after that, the blood is more active, and the cutting can lead to more bleeding”. The other three did not have such restrictions. In the words of Omari: “Many think that the sun makes the body boil, but due to modern instruments, it is no longer important to do it in the morning”. Khasim had yet another explanation for why the procedure was formerly always done in the morning. He argued that in the old times, when the practitioners used a thread, razor blade, and a wooden spoon, the clients often started vomiting, and the cutting was therefore done in the morning, and clients were told not to eat beforehand. With the use of modern forceps, he explained, the procedure is much quicker, and it is no longer a problem that the clients have eaten beforehand.
We observed that the surgery is done quickly: it takes three to four seconds only. The practitioner uses one pair of forceps to hold the uvula, and another pair to cut it. There is no cauterisation nor stitches on the wound. A male patient, approximately 25 years old, did not show any signs of pain. A female patient, approximately 5 years old, who sat on her mother’s lap during the cutting, whined for a few minutes after the cutting. In both cases, the kimeo specialist wrapped the amputated uvula in paper and gave it to the patient/caregiver.
We asked the kimeo cutters whether the cutting can be dangerous or whether any of their patients have died. All four denied that this had ever happened. However, two of them admitted that some patients can start bleeding after the cutting: “If we encounter heavy bleeding, we give the patients some medicine and it stops”. Rashidi, the most senior of the four kimeo cutters, disclosed that in very rare instances, the patient continues to bleed heavily, and they then tell them to go to hospital. He added that at hospitals, some doctors treat such patients, while others tell them to go back to the kimeo cutter.
Winning patients’ and caregivers’ trust
The practitioners emphasised different aspects when talking about how they gain patients' and caregivers’ trust. Rashidi talked about technical expertise and said that one has to watch the procedure for at least two to three years before one can carry it out; adding that it is much harder to learn than driving a car. Omari said that it is important to attend people in a nice way. He argued that health workers in the professional health system often fail to do this:
Medical people do not show love to the patients. Sometimes they just write, without even looking at the patient’s face. What is needed is words, advice, and a good relationship.
For Abasi, not coming through as greedy was very important for gaining patients’ trust. He explained that his father had considered his children's personality carefully when deciding whom among his eight children should work with him in an apprenticeship. He wanted someone calm, and who was not greedy, as one should not be tempted to cut people who do not suffer from kimeo. He emphasised that he adheres to what his father taught him about not being greedy:
There were many of those who came here this morning whom I told that they don’t have it. I said: “If you go somewhere else (to be cut) you will suffer for no reason, and then you will start to get problems.” (…) I explained to them: “Go to a hospital and get tested, you will get some other kind of treatment”.
Although there was some variation between the practitioners in what they emphasised as enhancing trust among their clients, all of them appeared to be conscious about this aspect of their work.
Licenses to practice and confidence in own expertise All the practitioners were aware of the fact that Tanzanian health authorities are ambivalent or sceptical towards the practice of uvulectomy and only one of the four clinics had a signpost outside. All four were members of Chama cha Utabibu Asilia (The Association for Traditional Therapies), which provides licenses to their members in line with the law that regulates Traditional, Complementary, and Alternative medicine (TCMA) in the country. Two of them carried their member cards around their necks, and on the cards, they were entitled mganga, a Swahili word that is used for both medical doctors and healers. Two of the providers specifically referred to the license as a form of approval from the government. In the words of one of them:
We have the license, and we have been here for so many years – my father before me - so more than 50 years! The government people tell us just to go ahead. Sometimes a police officer comes here, and I’m thinking to myself – ‘I will be arrested today’ – but then it’s just a patient!
The licenses that come with the membership in the association give the providers a sense of legality, although they know that the health authorities disagree with the form of surgery that they carry out. Omari emphasised that they use the same equipment as in hospitals and that many come to him after having been treated in the professional health system without getting well:
Medical people do not explain kimeo properly, they say it is not a disease. They say that the uvula acts like a police force to safeguard the body. But there are countries where the military force can harm the citizens, right?
All the providers appeared to be confident that kimeo is an illness that modern, professional medicine simply has not yet understood. This perception was shared by the great majority of the caregivers, to whom we now turn.
Caregivers
The 43 caregivers who took part in this study reported to have taken all together 18 children for cutting and six of the participants had memories of having gone through uvulectomy themselves.
Perceptions of kimeo
The analysis showed that caregivers share coherent ethnomedical understanding of kimeo. We did not find any gendered differences in the way that participants talked about kimeo and uvulectomy, nor any systematic differences between the different districts of the city. Muslim caregivers who originated in Eastern Tanzania knew more about kimeo than Christian caregivers from Northern Tanzania, but we did not systematically look into differences between different ethnic and religious groups.
Belief in kimeo All participants in the FGDs knew of kimeo and uvulectomy and the great majority personally knew someone who had suffered from kimeo. The overall sentiment across all focus groups was that kimeo exists and is a threat to children’s health. Only one participant among the 43, a Christian woman in her 30 s, said that she did not believe in the existence of kimeo. Two other participants, both male and Christian, explained that they had initially been sceptical about the existence of kimeo, but that they had changed their mind after having witnessed children in their neighbourhood getting well from prolonged illness after they had been cut.
All participants agreed that kimeo does not belong to the sphere of tradition, ritual, or religion (mila na desturi, dini), but several participants who were immigrants to the city mentioned that kimeo is not common in their home area and that they had only heard about it when they came to Dar es Salaam.
Kimeo symptoms and severity of the condition In all FGDs, participants described kimeo as a growth, elongation, or swelling of the uvula, and they mentioned cough as the main symptom which in young children is commonly accompanied by vomiting. In the words of one of the elderly female participants who had retired from a formal sector job:
The child coughs a lot, you give him cough mixtures, but he doesn't get cured. If it's a young child, he gets a high fever in the evenings, he coughs, and when you breastfeed, the child vomits, and he also vomits the food you give him. He becomes weak because nothing stays in his stomach. (FGD 05)
While cough and vomiting were the most mentioned symptoms of kimeo, some participants also mentioned that an elongated uvula could lead to difficulties in breathing. Vomiting and difficulties to eat were described as symptoms that made affected children very weak, and difficulty to breathe was regarded as a very serious symptom. Several participants emphasised that the illness can be life-threatening if uvulectomy is not performed and this was linked to the importance of not delaying taking the child for uvulectomy:
The uvula elongates. If it increases and swells - they say that if it continues to swell and then bursts - at the end of the day that puss will make you die. It is therefore extremely important to hurry up and cut it early. (FGD 06)
Participants also said that the kimeo cutter must make sure to catch the amputated part to avoid it being swallowed by the patient, since it contains the dangerous puss that can then spread to the body. In three of the ten groups, one or more participants associated this puss with tuberculosis which would eventually lead to the patient’s death. While there was overall consensus that if left untreated, kimeo is dangerous and potentially life-threatening, only one participant reported that he knew of a child who had died due to delayed cutting.
Trust in the practitioners
Participants mentioned six different kimeo specialists in Dar es Salaam and several referred to them by name. The great majority of the participants referred to the place where the uvulectomy is performed as a hospital/clinic (hospitali) and the folk practitioner as “kimeo cutter” (mkata kimeo), or simply “expert” (mtaalam). Some referred to the kimeo specialist as “doctor” (daktari). No participants referred to them with the term healer/traditional doctor (mganga wa kienyeji).
Several participants emphasised that the kimeo cutters are experts on what they do and that it takes "great expertise (utaalamu mkubwa) to take a scissor down the throat”. The fact that the folk practitioners use the same equipment as hospital staff enhanced trust:
You see their equipment – it is the same as they have at hospitals. And they have identity cards. (FGD 07)
Another factor that enhanced trust was the fact that kimeo cutters turn some patients away. This was seen as a poof that they are not greedy:
If it is true that the child has it, they tell you, but if the child doesn’t have it, they tell the mother: “Mama, take your child back home, there is no kimeo”. Those people are not greedy for money. (FGD 01)
Caregivers then emphasised the same issues that the practitioners themselves mentioned as important for building trust: licenses, professionalism, and the fact that they do not cut all clients but turn some of them away.
Pathways of care for children
Approximately one third of the participants reported that they had taken one or more of their children for uvulectomy. The great majority said that they had taken their child to a professional health provider as a first recourse. A middle-aged man explained that when his son was four months old, he had a terrible cough:
They diagnosed him with malaria and cough at the hospital. He was given cough mixtures and he completed the prescribed doses (…), but he didn’t get well. Then people said: “It is homa homa (fever, general weakness/illness), he has kimeo”, so they said he should be cut. I agreed, and truly, he became well after they took away that kimeo. (…) You will go and get treatment for that homa until you have used all kinds of medications, but then (after cutting), just one day and the child is well! (FGD 06)
Many participants told similar stories—if care seeking through the professional health system failed to improve the child’s condition, they had listened to advice from others that they should take their child for cutting. It is also notable that although most participants referred to the illness period as lasting for a long time, it became clear that in some of the cases, the illness had lasted for a week only, but they felt that in that period, their child suffered badly.
Bypassing professional health care A few participants explained that based on their experience with kimeo or advice from relatives or friends, they had taken their child directly for cutting, without accessing professional health care first. One woman reported that her first child suffered from a severe cough when he was nine months old. He had started losing weight due to the coughing and vomiting and she took him to several private clinics that offer professional services, but there was no improvement. He got well only after she had taken him for cutting. When her second child, who was then five months old, started coughing, she took him directly to a kimeo specialist:
From the experience I had with my first born (…) I myself decided that this must be kimeo. And when I took him to the place where they remove it, they confirmed that he had kimeo. (FDG02)
For some caregivers then, earlier personal experience guided their decision to bypass professional health care for their children.
Own experiences with going through uvulectomy influence care seeking Six of the 43 participants remembered going through uvulectomy themselves and all reported that for them, the cutting had given relief to their symptoms. A tailor in his early 40 s explained that he had uvulectomy performed when he was 23. He had been coughing for approximately a month and was given cough mixtures, but he did not get better. Three days after the cutting he got well and the condition has not come back. When his daughter got sick when she was three years old, he decided to take her for cutting as well. She was coughing a lot and they could see that the uvula was very long, touching her throat. After the cutting, she reportedly never suffered from a prolonged cough again. Another male participant, a taxi driver, was around 14 years old when he was cut. He was coughing a lot and was “sleeping the whole afternoon”. He went for professional health care but did not get better until he had gone through uvulectomy. Like the tailor, the taxi driver chose to take his own children for cutting. His twins were then two years old. For these two participants then, their own positive experiences with uvulectomy were a central factor influencing their decision to take their children for cutting.
Communication between caregivers and formal health workers
In all groups, there was agreement that health authorities disapprove of uvulectomy and claim that a disease like kimeo does not exist. One male caregiver argued that since the professional health workers do not know the illness, they are unable to treat kimeo:
The normal hospitals (hospitali za kwaida) aren’t aware of it, hence they can’t treat it.
When asked whether they discussed kimeo with health workers, most caregivers said no. One mother explained how this made her keep silent:
The doctor gives you medication to prevent the child from vomiting, but it just continues. When you try to tell the doctor that there are other treatments, he will tell you that you shouldn’t teach him how to do his work. (…) Then you decide to keep quiet. What else can you do? (FGD02)
As mentioned earlier, only one of the 43 participants said that she did not believe in the existence of kimeo. After listening to another participant’s narration about taking her child for uvulectomy, she said:
I almost did the same thing, but when I took my baby who had similar symptoms to the doctor, he insisted that I shouldn’t take him for uvula cutting. He told me about a mother who lost her child after trying to hide that she had taken the baby for cutting. The baby died because of losing a lot of blood. (FGD04)
This woman recounted that her child’s uvula had become very long, but after three days on the prescribed medication the child got well and did not vomit anymore. She had taken her child to a private clinic, and the medication cost her TZS 18,000 (approximately USD 7.8). This is almost twice as much as kimeo specialists charge for cutting.