Study design, site and sample

This study forms part of a larger mixed method research [29] that investigated the burden of the condition called “akamiro” [uvula infection], its general epidemiology, beliefs and practices around it, and the traditional surgical procedure (uvulectomy). We draw on the qualitative description [30] for this paper to address the latter part of the objective; beliefs and practices regarding uvula infection and traditional uvulectomy. The study was conducted in Luwero district, central Uganda. The district covers an area of 2,218 square KMs with a population of 511,900 and population density of 230.8/ square KM. It comprises of 13 sub counties, 90 parishes and 594 villages. Two sub counties, Zirobwe and Bombo Town Council were selected for this study, partly because the reported cases during an early investigation identified these as the epicentres of uvulectomy. The two sub counties are predominantly occupied by Baganda ethnic group, with Bombo Town Council including a large Nubian community.

The sample consisted of six focus group discussions (FGDs) with community members, 12 interviews with uvulectomy clients, six with traditional surgeons, and 10 key informant interviews (KIIs) with community health workers (CHWs). The CHWs in Uganda are known as Village health Team (VHT) members. They are incorporated into the formal health system as the lowest health delivery structure, also known as health centre 1. They comprise of volunteers that are selected by communities from within themselves. CHWs are offered on-job training and refresher sessions by Ministry of health and implementing partners in health. Their roles include supporting the primary healthcare function, offering health information, and linking community members to the health services. [28] The latter role would include services like referral of persons with Uvula infections, for example. In total, 14 were conducted in Bombo Town council and 20 in Zirobwe sub county.

Sampling, data collection and tools

Participants were purposely selected from Zirobwe sub county and Bombo Town council, which were the sites for the larger survey. The participants were carefully selected to include persons who underwent traditional uvulectomy or caregivers (if children) for lived experiences, known traditional surgeons and CHWs who relate with community members, to establish treatment practices and referrals, and community members resident for more than 12 months to explore community beliefs. Persons who underwent traditional uvulectomy or the caregivers were identified from the household survey and asked if they wanted to share some more information about their experience. The CHWs are known in the villages, and were selected based on availability as long as they were active in their roles. Traditional surgeons were also known persons well identified by the community members. They were approached to voluntarily participate after explaining the study purpose. FGD members from the communities were selected with the support of the CHWs who supported mobilisation. They should have been residents of the community for at least 12 months. Data were collected in March 2021 by a team of four well trained and experienced research assistants (two females and two males). They were supervised by SPSK, and JN who also coordinated the study.

Interviews were mainly conducted in native Luganda language, and audio recorded with permission. Interview guides for CHWs included questions around their experiences dealing with households that reported cases of akamiro, approach to these cases including any advice provided and referrals, what they know about patterns of resort from their clients and recommendations on what to do with this condition. Traditional surgeons guide included topics around what they know about akamiro, including causes, symptoms and diagnosis, how they treat akamiro, views of their clients, patterns of resort they are aware of, their advice to the clients including any referrals, their take on the medical handling of akamiro, and details about the uvulectomy procedure. FGD guides included among others, what is known about akamiro including symptoms and causes, community perceptions about uvulectomy, how its diagnosed, community response when diagnosis is done, patterns of resort, uvulectomy procedure, who they trust to handle akamiro, uvulectomy costs, and any recommendations. Uvulectomy client interviews included their lived experience with akamiro, and the details from the uvulectomy procedure, the diagnosis, who they trust and any recommendations. Interviews with clients and surgeons were mainly to supplement the survey, with brief topic guides. These interviews with clients lasted an average of 30 minutes, while those with VHTs were shorter lasting an average of 25 minutes. FGDs lasted an average of 1 hour and 17 minutes.

Data management and analysis

All interviews and group discussions were audio recorded using Sony digital voice recorders. Interviewers transcribed and translated their own recordings. SPSK and an independent research assistant conducted the coding. The two developed an analysis plan using the thematic areas based on the topic guides. We followed the thematic analysis steps [31] that included: (i) familiarizing ourselves with the data after transcribing by reading several transcripts; (ii) generating initial codes used to guide the rest of the codebook, which were included in the draft analysis plan that followed the topic guides and updated during the coding process; (iii) coding systematically across the entire data; (iv) collating data relevant to each code; and (v) iteratively identifying the themes by collating codes into potential themes and gathering all data relevant to each potential theme. The analysis included running query reports of the codes with their quotations, and a codes document table to ascertain frequency of responses. Coding and analysis were conducted using Atlas ti 9.

Ethical considerations

The larger study was approved by the Makerere University School of Public Health, Research and Ethics Committee (Protocol 870), and by the Uganda National Council for Science and Technology (HS1167ES). All participants in the study provided written informed consent for interview and audio recordings. For the children who underwent traditional uvulectomy, their caregivers were interviewed. Permission was also sought from the district leadership before entry. Findings have been disseminated to the representatives of participants and the district health leadership, for action.

Community understanding of uvulitis (Akamiro)

The study explored the understanding of Uvulitis that was referred to as “Akamiro”, as well as the beliefs around its treatment. Community members described Akamiro using varied terms that mainly included: a big pimple, a large object the size of a chicken heart, one that grows larger compared to the normal and rests at the base of the tongue. Among the children, participants noted that it is an elongated uvula that is easily visible at the back of the mouth when a child is crying.

It looks like a chicken heart. It grows on the throat itself… elongates and develops pus. Every time you cough, it itches and if it bursts, the person dies. When it grows, it falls on the tongue. That is the thing they cut. FGD 1_Zirobwe

It is a pimple. It is longer than these pimples that attack the skin. That is why when they cut it off, it comes with a piece of meat. FGD1_Bombo

All participants including traditional surgeons acknowledged that they did not know what causes this condition. They believed that it was naturally occurring, even among babies. They reported its symptoms to include persistent and discomforting cough that eventually leads to loss of appetite and weight loss. Particularly, the children with this condition persistently struggle to swallow food or milk. Breastfeeding infants vomit the breast milk, which is believed to be caused by chocking from the elongated uvula. In some cases, the vomiting was also believed to result from a fluid that the elongated uvula emits when the child coughs. Lived experiences from in-depth interviews with survivors indicated developing pass, and swelling of the stomach that they believed resulted from swallowing the fluid generated by the elongated infected uvula. The uvula was also linked to an overflow of saliva, fever, difficulty in breathing and speech, diarrhoea among children, and vomiting.

I would cough and vomit, at times I would get itching in the neck and could not eat. I would also get a lot of neck and chest pain. It lasted for about two weeks. Even when I opened my mouth and the air enters I would feel bad. It was in the second week that I got a traditional surgeon. I went to him and he operated my uvula. When he finished he gave me salt water mixture to drink and some herbal medicine, and I went back home. When I came back I took food well without the pain I went through before the uvulectomy. The pain reduced after four days and I got my peace back. From that time, I have never felt any pain in the neck again or chest, and coughing stopped. I am fine. Uvulectomy client 1_Zirobwe

…It is dangerous because you do not get peace when you have it, it causes continuous severe coughing, one coughs nonstop without stopping, you have no peace until it is cut out and one gets better, at night one can’t sleep. Traditional Surgeon 1_ Bombo

Community diagnosis of Akamiro and decision to seek uvulectomy

The diagnosis of Akamiro was initially made by the caregivers or the patient experiencing the above symptoms, especially persistent cough, fever, and difficulty in swallowing. S/he then consults the trusted persons in the community to confirm. These included the known traditional surgeons followed by one of the community elders, known as omukebezi, and then the formal system health workers. The significant others like elderly grandparents and some selected neighbours were involved sometimes.

…the parents know it, the moment you cough for some days, they tell you, open your mouth and we see, because you can see it. They just use a torch and they see that it is the one. Community health worker 3_Bombo

One old woman [omukebezi] in the village examined her and told me that she had uvula that is why I took her to the local surgeon. She is specialized in identifying ‘Akamiro’. Me I could not tell that the child had ‘Akamiro’. Uvulectomy client /caregiver 5_Zirobwe

When it is confirmed that the patient has akamiro, most participants agreed that the traditional surgeons were the most trusted people to provide solutions. Surgical removal was the best option. Akamiro was perceived as fatal if not removed in time.

If surgery is not done, the child does not eat or swallow. I saw a 2 months old child who was suffering from it. They took him to a traditional surgeon who performed surgery… The child cannot swallow. It may even choke them. FGD 3_Bombo

Traditional surgeons also in line with other participants, confirmed that the only way to get relief from akamiro was to undergo surgery. They also concurred with most community participants that the formal health facilities in the area struggled to manage this condition, leaving people with mainly the traditional surgeons as to help them.

Doctors at the hospital have not reached the level of treating it. They claim that they don’t know the disease at all. Traditional Surgeon 3_Bombo

I have never heard that when you use such and such [western] medicine you can get better. No. But when they cut it that is when you get peace. Traditional Surgeon 1_Bombo

The reported pattern of resort for Akamiro was hierarchical in majority cases. The patients first reported to public health centres and a few to private clinics before being taken to traditional surgeons. This pattern of resort was dictated by the main symptom, which is persistent cough that often requires the formal health system. It was reported that the patients are treated for chronic cough and after persistent symptoms, they are taken to traditional surgeons. From varied accounts of both community members and CHWs, they pointed to a limitation with the formal health system in the area where the health workers “did not understand” the condition. Thus, the hierarchical pattern of resort is influenced by the failure to receive adequate satisfactory care at the health centres. Many participants noted that the best care and lasting treatment for Akamiro comes from the traditional surgeons. The response was also influence by the advice from those who have had or heard about the condition. They advised about the alternative when the formal health system failed. Most CHWs also noted that although they refer clients to the formal health system, they end up at the traditional surgeons after. Others noted that they are approached to treat cough that persists, forcing clients to seek further advice.

My child has suffered from it. I went to the hospital to seek treatment, but the problem is that the trained health workers have no knowledge about it. They present with fever and excessive cough, until you get a person who advises you to go to a “mukebezi” to check if it [Akamiro] is there. When she checks and it is actually there, she refers you to a traditional surgeon in Luwero [concealed location name]… He is famous for uvulectomy. After surgery, the fever reduces, although the child cannot breast feed well immediately. FGD 2 Zirobwe

They do not bring the child and say it is uvula. We usually handle children under 5 years, they bring the child with cough, so I give the child medication for cough. I usually ask for the age of the child and for how long the child has coughed, then I give the medication for cough which is amoxicillin. It is after failing to heal that they decide to take the child to the [traditional] surgeon. So, to me they bring somebody suffering from cough, not uvula. Community Health Worker 2, Zirobwe

The traditional uvulectomy procedure

The community reported varied accounts regarding the traditional surgical procedure. It is either carried out in the early morning hours or after sunset. Most traditional surgeons were reported to conduct the surgery in the morning hours.

I went at 4:00pm. Each surgeon has different timing. Now, for the case where I took my first child, he operates in the morning before the sun heats up. When the sun is shining, they do not operate since at the time the blood is flowing fast. Most of them operate in morning hours because the blood flow is not so fast. Uvulectomy client 7, Zirobwe

I informed him [surgeon] in the morning, and he told me that they usually cut this thing during morning hours or in the evening when moon is up. Uvulectomy client 4, Bombo

Duration of the uvulectomy procedure

We explored how long the procedure takes and the time spent at the traditional surgeons’ place. Most participants reported that they or other people they knew spent a short time at the surgeons, usually less than an hour. The client heads home soon after the uvulectomy procedure. The community members also noted that the actual procedure usually takes a minute or less with experienced traditional surgeons, with surgeons also confirming this timing.

…To me, if you have not disturbed me, within a minute I may have finished you. Babies don’t disturb because if a mother holds it properly the way you have instructed her… within one minute I am done. Traditional Surgeon 1_Bombo

Traditional uvulectomy tools

The main tools reported by community members, CHWs and the surgeons themselves were new razor blades, sticks, reeds, a piece of wood or a small board, strings, wires, curved sharp knives, cotton wool, and spoons. In a few cases, gloves were reported by some traditional surgeons. The razor blade was the most used item, broken into two to four pieces, intentionally small enough to enter the mouth of the patient without causing unintended injury. The razorblade is used together with either a reed or another type of stick, and a string or wire to hold the uvula. In some cases, a spoon, a piece of wood or a small board were also used in the process to help the patient keep an open mouth, hold the tongue down, and later hold the uvula. Aside from a razor blade that some clients reported went with, the rest of the tools were found at the traditional surgeons. A few surgeons also reported using a small curved sharp knife in lieu of a razor blade.

The quotations illustrate the typical explanations from participants:

The razor blade was new, he broke it into four small pieces that can fit in the mouth of the child. Then he put that small piece on a stick so that he could be able to hook the uvula and cut it. Then he put a spoon in the mouth of the child to keep it open. Uvulectomy client 7, Zirobwe

I get a piece of wood which helps to press and hold the tongue down, and then the Uvula is clearly seen. All of it rests on the wood. So, when you cut, it just comes out [with the wood]. I use a curved knife to cut it, pressing it against the wood, I squeeze the knife to cut it down. … It is a small knife just similar to a nail. Traditional Surgeon 1_Bombo

He brought a stick; it was like a reed. He broke a razorblade and attached it to the reed. …. I cannot explain it because I had just opened my mouth. But when he was finishing, I saw he had broken the razorblade. There is a way he cut [cannot explain it well], he told me to widely open my mouth. So, when I opened, he cut. Uvulectomy client 2_Zirobwe

He says that if he cuts the uvula and you swallow it, you die. So, he uses a string to tie it, the moment he cuts it, he pulls it out. He first hooks it before cutting it. Uvulectomy client 4_Zirobwe

Traditional surgeons also noted that they used gloves during the surgery, primarily to protect themselves from infections. However, only one client supported the use of gloves claimed by surgeons.

I use gloves. It is me who protects myself from getting infected because we are local surgeons in the community. You cannot know whether the patient has diseases like TB, you cannot know. We have to do it very fast. When a patient opens the mouth, you just cut it out very fast such that the patient goes away quickly without infecting you with his/her disease. Traditional Surgeon 1_Bombo

After the procedure, items like cotton wool, salty foods like corn were advised. The cotton wool was inserted in the ears that participants believed was to ‘prevent air entering and affecting the surgical site’. The surgeons explained to the clients that the ear, nose throat is linked.

P2: the cotton prevents cold air from going into the wound after surgery.

P3: Once, the cold air enters and blows over the fresh wound, it pains a lot. You can close the mouth to prevent air from entering, but you cannot close the ears. That is why he inserts a piece of cotton wool. FGD 1_Zirobwe

The cost of traditional uvulectomy

There was no standard cost reported for the traditional surgery. Traditional surgeons charged variably basing on perceived social economic status of the client. The charges ranged from 3,000 to 100,000 Uganda shillings [about 90 US cents to 28 US dollars]. In case clients had no cash, they reported to sometimes pay in kind with items like chicken, goats and beer, all at will.

They are highly experienced surgeons. When it comes to the cost, the children are charged 30,000/ = to 50,000/ =, adults are charged 70,000/ =. It depends on the financial situation you are in that time. FGD 2, Zirobwe

Sometimes they just give us chicken, and you also take it. Your aim is to heal a person. Traditional Surgeon 1, Zirobwe

Some surgeons reported caretakers of children that needed urgent surgery but did not have money were not charged. They reported to sometimes offer free services to save the life, with some people coming back later to express gratitude with whatever they could afford.

There are those who come when they do not have the money, you help them out. One may come with a child and the condition of the child is not good at all, then you just have to be kind hearted and help them because you are also a parent. Traditional Surgeon 1_Bombo

Community trust in traditional surgeons

The community members expressed near complete trust in traditional surgeons, who they perceive as the ‘only persons that can perform uvulectomy well’, and have been in the community for a long time. Participants said they had not heard of cases of death directly at the hands of surgeons reported, which further entrenched their position. Surgeons were seen as having a special God given talent, while other people also equated them to traditional circumcisers that have built a reputation from the experience over time. The cost of procedure and the flexibility in payment including in kind and in rare cases offering free services to save lives were further justifications for their utmost trust. This, coupled with a speedy procedure and predictable good outcomes ensured they gained more trust. They were also readily available when needed.

Since the traditional surgeon is the one who knows it, then you can trust them to treat it. Just like the health workers who treat Malaria, they are also fully trusted. FGD 2_Bombo

We trust him because he has treated very many people and none of them has died. People go to hospitals for surgery, patients die after but with him, nobody has died. FGD 1_Zirobwe

Community members intimated that the experience from some formal health facilities where people resorted to first for care was not satisfying. This also entrenched the position of the traditional surgeons who were able to cure the failed cases from the formal health system. The community members also reported that their traditional surgeons had several cases brought to them from outside the community. With such demand, their trust in the community was further strengthened.

It is not easy to treat. Not everyone one can do it… In this area, we have got only one traditional surgeon. People come from all over. If there was as traditional surgeon in Kikyusa and Kyaggwe, those people there would not be coming this side. FGD 1_Zirobwe.

Despite the overwhelming trust by most participants, there were deviant cases of scepticism about the traditional surgeons. However, these were rare, contextual and not completely negative. A few people said they could not trust those who are new, while one person who underwent a successful surgery said they would not advise someone to go there now, because times have changed. There were fears of potential infections resulting from non-use of gloves and bad tools. Worth noting is that one surgeon reported also reported that there are colleagues he does not trust.

Others are there but I don’t trust them, they try but… no they are fake. They try, sometimes they cut and cause more harm. Sometimes a person is hurt and abandoned, so he looks for another surgeon to help treat him. Traditional Surgeon, 2_Bombo

The CHWs also trusted the traditional surgeons, and most confessed to referring clients to both the formal health centres but also to traditional surgeons; even their own relatives. Those who had not referred them yet, said they would refer them in future, if approached. CHWs noted that it was better for clients to go the traditional surgeons where they get assured quick services than the formal health system where several referrals will be made from facility to another until the National referral hospital level. Some believed that there is no other formal healthcare solution to the akamiro problem.

…because even when one comes here [health centre], he will make a line and they will end up referring him there [another facility], even there, they will write for him a letter referring him to Mulago [National referral hospital]. So, when he sees that process of being disturbed, he just cuts it short and goes there [traditional surgeon]. The people they treat, get healed. For example, my brother, he was cut and now he is healed. Community health worker 1_Bombo

I would just direct them to go for uvulectomy since there is not any other treatment for it. Yes, I know the [traditional] surgeon, so if a patient came to me, I would direct him to the surgeon. Community health worker 1_ Zirobwe