Results

Participant characteristics
There were 19 operational health providers, two central health providers, two NGO managers, three traditional health practitioners, seven patient guardians, 18 local community members. The population consisted of 18 women and 33 men. Regarding operational health providers, initially planned for 24 participants, saturation was achieved after 19 participants, bringing the total number of participants to 51 people (Table 2).

Knowledge and practices of healthcare providers at the operational level on noma
While the majority of health workers claimed to have heard of noma, particularly during their initial training, few were able to give a precise definition or identify its main characteristics. For example, one health worker mentioned. Also, a major confusion was noted between noma and other maxillofacial pathologies, such as cleft lip and palate, also known as cleft lip. A nurse asked the question, ” Excuse me, is that noma that is cleft lip?” (HP12).

The lack of ongoing training or refresher training affected the accuracy of the definitions given. This was confirmed by a caregiver: “If you had told me about malaria or acute flaccid paralysis, I would have told you because we hear about that every day. But noma, it’s been a long time ago” (HP11).

One point raised in these interviews was the lack of systematic inspection of the mouth during consultations. Only oral health professionals systematically inspect the mouth. The majority of caregivers admitted to examining the oral cavity only when a patient presented oral pain or visible lesions. One nurse confided: “Systematically, no. It’s when the person says they have sores in their mouth that we try to see” (HP12).

Reporting errors were also noted. It turned out that a single CSPS had recorded more than 70 cases in 2023. After verification, it was found that this was a data entry error.

Since 2021, noma reporting has been made weekly in the Integrated Disease Surveillance and Response (IDSR) technical guide, but it was clear that noma still did not appear in the Weekly Official Letter Telegramme. “Indeed, noma reporting is still done monthly,” CL01, a manager at the Ministry of Health, told us. In a CSPS, a nurse also stated: “I have no idea about noma monitoring. In the TLOH, it’s not in there. As long as it’s not in there, monitoring is really difficult” (HP12).

Another important fact noted was the participation of community-based health workers (CBWs) in case detection. Indeed, some cases were discovered thanks to some CBWs: ” Once I even saw a child for that. They were displaced people. I sent them here (to the CSPS), then they went to the district ” (CBW02).

Factors related to the provision of care and the geographical accessibility of health centres
Some villages were located several kilometres from the CSPS with geographical obstacles such as dams or impassable roads, especially during the rainy season. This is the case here, explained by a village resident during a focus group discussion: ” The water fills the backwaters. You have to wait for it to decrease before you can pass and bring the patient to the CSPS, otherwise the water risks carrying you away” (P6FGD1).

One of the problems identified was the lack of dental care in some provinces. One community member explained: “There is no dental practice here. Except in Koudougou, about 40 km from here” (P1FGD1).

The number of health workers varied depending on the centres: Some rural health centres had two workers for several villages. This situation was deplored as follows: “If a health worker spends their time consulting morning, noon, and night, there is no rest on call, well! At a certain point we cannot do our best” (HP15).

There was also a lack of technical and financial resources for the activities of community health workers who act as community relays. The lack of a badge or badges often reduced their credibility. One community health worker expressed his disappointment: “It’s complicated. If you have to go somewhere, you have to pay for fuel, and often it’s the telephone units for calls” (CBW02).

Another obstacle to detecting noma was related to insecurity. Many areas had become inaccessible due to insecurity. However, malnutrition is rife in these areas. This hinders the activities of health centres and NGOs, limiting access to care.

Community knowledge of noma
The general ignorance surrounding noma was evident in discussions with the community. Many participants had never heard of this disease. However, some had identified it after seeing someone with it. The description given by these participants corresponded well to the symptoms of noma. The name in the local language is diverse. Some called it ” gniri ” in Gourounsi. » (P4FGD2) or « Nadiyo » (P6FGD1). In Mooré some called it « Roulgou » (T02), other « maskindi » (P5FGD3). The traditional practitioners interviewed recognized certain manifestations of noma, but their interpretations varied.

Therapeutic pathway and recourse to traditional health practitioners
Some participants admitted to visiting traditional practitioners. According to them, some illnesses were not “white people’s illnesses,” and therefore could not be treated in hospitals. Many former noma patients or their families had consulted traditional practitioners as a first-line treatment. This therapeutic process resulted in delayed detection: “We consulted a traditional practitioner, but my child’s condition only worsened. So we took him to the hospital.” (PG04). The patient’s guardians emphasized a sudden onset: “It came suddenly and quickly got worse. In no time. It started to eat away suddenly” (PG01). This testimony clearly illustrated the rapid and aggressive progression of noma, which often goes unnoticed or neglected until it is too late for early treatment.

As reasons for late access to care, the guardians of patients also cited economic problems: “At the beginning of the illness they gave us a prescription, but we didn’t have the money to pay” (PG07). 

Cultural beliefs, stigma, discrimination and social exclusion
The origin of the disease was subject to different interpretations. While some recognized that it was a disease, others suggested mystical explanations. Some groups attributed noma to a curse, a spell cast by a malevolent spirit, or divine punishment. Others even accused sorcerers of being the cause. Families of the sick therefore turned to the occult sciences, delaying treatment: “At first, we thought someone had cast a spell on him. So we preferred to make sacrifices” (PG03).

Cultural beliefs often led to child abandonment or infanticide. The massive and sudden destruction of the face led families to believe that these children were inhuman: “I even saw a case where the mother was told to kill the child because the child was a dog, given how the child ate, when he wanted to drink water he had to stick out his tongue,” a health worker (HP05) told us. These beliefs influenced how patients were perceived and cared for.

The after-effects of noma were frightening for some people. Some patients had to drop out of school because of the mockery of their classmates and the fear of some parents of seeing their children contaminated. A parent of a patient explained to us the situation of his child: “After the intervention, he returned to school but the teacher did not want to take him back for fear of other parents who do not want to see my child near their children” (PG04). The stigma meant that parents preferred to hide the children, preventing its detection, a father explained this in these terms. Added to this was the abandonment of children by families. Indeed, two fathers of patients explained to us that their children had been abandoned by the mother after the onset of the disease. An NGO manager agreed: “There are parents who abandon children. Either it is the father, or the mother or the whole family who loses interest. This means that children would die” (NGO2).