3.1.1. “Dangui” (sleeping sickness) is perceived as a serious disease but very rare and of the past.

“Dangui” means sleeping sickness in the local Ngbaka language. Participants perceive it as a serious illness because it has physical and social consequences. It is known as fatal and is associated with serious symptoms such as madness, behavioural disorders and impotence. It is a source of family conflict and rejection because it is associated with evil spirits and witchcraft. Nevertheless, the participants associate sleeping sickness with the past, more specifically with the colonial era, and today they perceived it as fairly rare. They therefore feel less concerned, especially young people.

“Sleeping sickness is really very dangerous, it killed a lot of people in the 60s, before independence, the Belgians were still in the Congo, Maman! Now this disease is rare, we’re not going to find any more cases here.” (FGD, young adult man, Cité Bemba, October 2023)

In consequence, screening is seen as a waste of time interfering with work in the fields because the participants feel discouraged by results that are very often negative. The rarity of the disease provokes frustration and even creates suspicion. The fact that people come to screening sometimes feeling sick, but are not diagnosed make them feel their results are being kept from them. Some people wonder whether this screening might not have a hidden purpose.

“They take your blood for tests, but they don’t give you the results, they just tell us ‘it’s negative’, but they stay with the blood there and people say that our blood is taken to Europe for I don’t know what, that’s why they’re now afraid to come for screening.” (FGD, young men, Cité Bemba, October 2023)

3.1.2. Despite fexinidazole oral treatment and simplified screening and care, fear of the side effects, lumbar puncture, toxic treatment and a perceived high indirect cost are still present in people’s minds.

Although lumbar puncture and NECT are currently only required for very advanced cases and the use of fexinidazole tablets is preferred, this does not seem to be known by the population. Screening is still strongly associated with lumbar puncture and its side-effects, and treatment is still associated with toxic and potentially lethal products.

Although outpatient treatment in health centres could now be possible, people still associate it with hospitalisation. Even if they are aware that the treatment is free, hospitalisation represents a significant cost for patients and their families: transport to the hospital, food and the cost of a family member’s absence from the field for 10 days.

“They give you the treatment for free, but when you go there it’s very far away and no one will give you any food there, because you are alone. But you know that the medicine causes reactions if you don’t eat properly and you can die. That’s why, because we don’t have the means, we prefer to avoid treatment if we’re ill... it’s better to die with the illness than with the side-effects of the treatment and hunger. So some people say, why even go for screening if I can’t afford it? (ESS, RECO, male, Boyagonda, October 2023)

Regarding fexinidazole and related new care procedures, participants report that there has been no awareness of gHAT and related care for a very long time.

“We only pass on the message that the mobile team has come for the screening and not to move, to come to the screening, that the screening is free and that the screening will take place in the village chief’s home under a tree or in church, for example. Apart from that, there’s no other information. (FGD, Botuzu men, October 2023)

3.1.3. Mobile Unit screening organisation has improved however some practices remain as barriers: lack of privacy, community cultural norms and community rhythm.

Screening is mainly taking place outdoor in public. Sleeping sickness is associated with witchcraft and is therefore highly stigmatised, with potential social consequences. Witchcraft suggests that the patient and/or his family are responsible for the illness. The fact that screening is taking place in the open air reinforces the fear of being rejected by peers.

“If you’re caught with sleeping sickness, you become a subject of mockery in the village, people will start saying that you’re bewitched, they won’t come near you, because you’re dangerous” (FGD, woman, Botuzu, October 2023).

The way in which screening is organised is also an issue in relation to other cultural norms in the community. Participants describe how there is a sense of shame in showing that you are in pain, especially for men in front of their wives and children. They also describe how the queue does not respect the priority of elders who should not wait standing after their children.

“I don’t think it’s right to do the tests out in the open like that, queuing as pupil, this is humiliating to see ancient behind me. I don’t take part in the screening either, because they catch you and you become a laughing stock, they prick you and you scream in front of your children and your poverty is going to get out, I’d rather die, Maman” (FGD, men, Boyagonda, October 2023).

Mobile Unit chiefs report in their interviews that adapting the screening schedule to the community’s daily rhythm (early in the morning before field work and late in the afternoon) improved community participation. However, community members point out that at certain times of the year, part of the population goes to work in the forest for several weeks or even several months during the semi-sowing period (September-October) and the harvesting period (which varies depending on the crop). As a result, they are unlikely to be counted in the pre-screening census, they are not screened because they are not informed.

“People goes into the forest to work in the fields for long period, and many miss the screening because they don’t even know when it is. They go to their camps in the forest for several weeks. The team needs to be able to go there and screen them” (ESS, RECO, woman, October 2023).

On the other hand, participants also identify some levers that positively influence participation in the screening organisation. They mention the importance of involving chiefs and some trusted people. For example, one RECO mention in an interview that people often go because they respect and trust their village chiefs, who asked them to go, rather than because of any collective effort to eradicate the disease.

“There are people who sacrifice their time to come to the screening, but we come for nothing and we stay in line like little children. We only go because the capita (village chief) asks everyone to go”. (ESS, Recos, male, Boyagonda, October 2023)

In this context, the involvement of trusted people such as the chiefs, the RECOS, the “Infirmier Titulaire” (nurse in charge of health centre) is essential. The Mobile Unit chiefs underline this important aspect for the success of the screening and insist that the RECOs and chiefs should be motivated (financially). The chiefs and RECOs who accompany the work of the MUs have a real loss of income if they do not go to the fields during the screening period. If no compensation is introduced, the MU chiefs fear that their good relations and willingness of community leaders to support the MUs will be damaged. This feeling could be exacerbated in a context where cases of disease are rare.

“A village can hold 5,000 people, so the RECOs and the chiefs have to stay until everyone has passed through. This makes it very difficult for them to deal with the problems in the fields. The RECOs are used to distributing mosquito nets, vaccines and receiving a small payment. But we haven’t planned for that. That’s why we can arrive in a village and they’re all off in the fields, and that delays the work. But this little thing could improve screening” (ESS, MU Chief, October 2023).

3.2.1. Perception of oral medicines to cure serious diseases.

Participants in the study describe 3 types of medication to treat illnesses: plants, tablets and injections. Plants are available locally and are free, so they are the first choice. If that doesn’t work, people turn to tablets (such as paracetamol) bought from pharmacies. Plants and tablets bought from pharmacies are associated with “minor ailments” such as fever, headache and even malaria. They are associated with self-medication or traditional medicine and are taken locally.

“When we are ill, there are many plants in the forest that heal or we go to the chemist to find the remedy. You can ask another person who has had the same experience. For example, someone else may tell you that when my child was ill, I gave him this medicine, and as your child has almost the same symptoms, you can try the same medicines. When you go to the health centre, you have to have money” (FGD, men, Boyagonda, October 2023).

There are tablets that are prescribed and therefore administered by professionals in health facilities. These tablets are perceived to be for potentially serious conditions and to have more side effects. However, they are also perceived as slower to respond than injections because they have to be taken over a longer period of time and tend to weaken the person. For serious illnesses, many participants say they would prefer injections because of their rapid onset of action and therefore perceived shorter treatment. Injections are for serious conditions and are associated with health facilities, particularly hospitals. In fact, for some people, receiving good treatment in hospital is equivalent to receiving injections. Injections are perceived to be more expensive, faster-acting and stronger, but they are also perceived as more risky because they have more side effects. Table 2 summarises the perceptions of plants, tablets and injections.

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Table 2. Summary of the perception of medicines identified in the data.

https://doi.org/10.1371/journal.pntd.0013197.t002

“Injections are very risky, my daughter is now ten years old, in 2021 we admitted her to hospital and treated her with injections because her condition was serious, but after the treatment we noticed that her foot was swelling where she had been injected and this created an abscess and to this day my daughter has a deformity as a result of the injections” (FGD, women, Botuzu, October 2023).

3.2.2. Perception of gHAT tablets: “Reducing the distance between the community and the treatment! It will save lives, it will be fantastic!.

Participants unanimously welcome the prospect of a future single-dose oral tablet for the treatment of gHAT. This, of course, echoes the issue of indirect costs associated with treatment and care.

“ Medicines will really help a lot of people. We’re poor here and to get treatment you have to travel a long way, pay for transport and accommodation, it’s expensive. Some people can’t afford it and die. But if the medicines are brought to us, it will be a good thing for the community” (FGD, women, Botuzu, October 2023).

Many participants immediately associate taking oral tablets as a new treatment with the cessation of lumbar puncture.

“It’s a good thing, people used to run away from injections if we get this medicine it will be a really good thing and I don’t think people will run away from treatment any more, because I was used to be scared of injections, especially the one in the spine” (FGD, Botuzu woman, October 2023).

If there is good awareness, participants are confident that acoziborole should be well accepted by the community.

“Even if they are used to medicines, they may find it strange that there is a pill for trypanosomiasis, but they will accept it without any problems unless there are side effects”. (ESS, RECOS, male, Quartier Révolution, October 2023)

3.2.3. Perception of gHAT tablets: Concern about taking a tablet administered outside a health facility.

Despite their enthusiasm, participants highlight certain elements that could potentially hinder their participation. They compare taking a single-dose tablet for gHAT with their experience of vaccination campaigns or the door-to-door distribution of ivermectine for lymphatic filariasis in villages. Although acoziborole will initially be distributed in health facilities as part of the STROGHAT trial, the comparison provides some interesting elements for the future.

1. a. Managing side effects and overdose

For the participants, taking medicines in the community, outside the structures, is not without risk. Medicines that are not available off the shelf and therefore prescribed are stronger and are given within the framework of a structure that can ensure follow-up in the event of problems. The medicines distributed in the village are administered by health staff and are not off the shelf. They are associated with potentially serious side-effects and are perceived as being unsupervised.

Participants emphasize that the main problem with these free drug distributions carried out by organisations independent of the health centre is that there is no follow-up regarding side effects. As a result, taking the medicine can be perceived as causing illness or even death, when the person was feeling perfectly well in the first place. To deal with this, they suggest leaving free medicines to treat any side-effects at health posts or health centres, and they also suggest getting these facilities involved so that they can provide free follow-up.

“Very often the medicine we’re given for free creates illnesses after the organisation goes. When you go to the health centre for your side effects, they ask you for money and if you don’t have the money you can lose your child just like that. Which is why organisation needs to work with our health posts and health centres. (FGD woman, Cité Bemba, October 2023)

Overdosing was also one of the concerns raised by participants, many of whom made the link between serious side effects and overdosing, especially if the person had not eaten properly beforehand. They were also concerned about tablet distributors calculating the correct dose according to the person’s weight, age and height, and feeding people beforehand.

“You have to take into account the dose, you have to take the person’s height and weight and also know if the person is eating well, here we don’t eat well and if you come with medicines that are very strong, it’s going to kill us again.” (FGD, women, Botuzu, October 2023)

1. b. (no) Confidence in the organisation administering the medication

A problem of trust is also mentioned in relation to the free distribution of medicines. Some mention rumours that these drugs would have another purpose, such as killing people. Organisations distributing ivermectine or doing vaccinations are often vertical programmes and are perceived by people as being outside the health system and sometimes even linked to “white people” and this seems to shake people’s confidence in the products.

“Our children suffer a lot from diarrhoea and others die, but when we lose children like that, without knowing the causes, other people say it’s because of white medicines that are distributed free of charge. I know that you (the interviewer) have our black skin, so you can’t hurt us like the white man. But because of him, we refuse”. (FGD, women, Botuzu, October 2023)

The person who gives the medicine and is responsible for distribution is therefore of vital importance, and the participants are very insistent that people in the community or trusted health structures should be involved.

We don’t want you to be able to send us someone from outside for fear that nothing good will happen to us, which is why we want ourselves, the chief and the RECOs to be able to manage this (FGD, men, Boyagonda, October 2023).

Concerns about serious side-effects, overdosing and the involvement of “white people” are probably of particular importance when it comes to gHAT, which is associated in the collective consciousness with treatments dating back to the colonial era, to toxic treatment that potential lead to death.

“You have to follow up each person who drinks this, because the medicines we used to give led too many people dying, instead of the person recovering, the medicines killed them, so you have to follow up after three months to see the side effects”. (FGD, men, Botuzu, October 2023)