Noma: Experiences of Survivors, Opinion Leaders and Healthcare Professionals in Burkina Faso

Abstract

The scientific literature on noma (Cancrum Oris) has clearly increased in recent decades, but there seems to have been limited analysis of issues around the psycho-social impacts of this disease. Even when these issues have been addressed, the focus has tended to be on patient experiences, whereas the community dimension of the disease and the role of healthcare professionals and community leaders in mitigating these impacts remain largely unexplored. A study in the form of semi-directed interviews with 20 noma survivors and 10 healthcare professionals and community leaders was conducted between January and March 2021 in Burkina Faso with the aim of describing the experiences of noma survivors, generating knowledge about living with the burden of the disease and understanding the attitudes of community leaders towards the disease. The results reveal that noma is a disease that affects economically vulnerable populations and leads to extreme household poverty. As far as treatment is concerned, patients tend to turn to practitioners of both traditional and modern medicine. Within communities, noma survivors face discrimination and stigma. The study highlighted a lack of information and knowledge about noma. However, surgical operations lead to patient satisfaction and these remain one of the coping strategies used to tackle the stigma and discrimination. The recommendations set out in this article are aimed firstly at stepping up research into the psycho-social impacts of noma, and secondly at considering these impacts in regional programmes and national plans to combat the disease.

Psychosocial aspects of Noma (Cancrum Oris) in sub-Saharan Africa: A scoping review

“…peer-reviewed original articles published in SSA on the topic) covering four of the 46 SSA nations, namely Burkina Faso, Niger, Nigeria, Ethiopia, and both Niger and Burkina Faso, three studies are qualitative, two cross-sectional and one retrospective. Key conclusions are: (1) one-third experience significant psychological distress 5 ; (2) social issues such as bullying, social exclusion and isolation are frequent 9,12 ; (3) the disease has significant social and economic costs, with lost productivity estimated between 16 and 20 m US$ 6 ; and (4) many patients and caregivers are involved.…”

Health-related quality of life in patients with noma (cancrum oris): Case series

“…In the literature, the documented risk factors for noma include poor living standards, extreme poverty, poor oral hygiene, severe malnutrition, and HIV infection [11] , [12] . Similarly, in this case series, the predisposing factor for cancrum oris in both adult patients was HIV infection, whereas poor nutritional status was a risk factor in the pediatric patient.…”

“…To cope with the costs of the disease, patients or caretakers end up spending little savings they had and often sell their properties. Moreover, the patient or their caretakers tend to take time off from their business which in turn impacts their income negatively [12] . This was evident in our cases as well.…”

Facing stigma: The psychological burden of Noma survivors

“…[4][5][6][7] Very few studies have been done on the psychological effects of living with Noma. 3,8,9 Noma survivors frequently experience discrimination and prejudice in their communities. The physical scarring leaves behind deep psychological wounds, such as feelings of guilt, embarrassment, and self-consciousness.…”