Impact of Erroneous Belief on Timely Health Care-Seeking Practices Among Noma (Facial Gangrene) Survivors in Ethiopia

Background: Noma is a gangrenous disease that primarily affects young children in extremely poor regions of Africa, Asia, and Latin America. Noma has one of the highest mortality rates, estimated at 90%. Noma begins in the oral cavity and it spreads rapidly and destroys bone, muscle, and skin in the orofacial anatomy. The full onset of Noma is preventable and inexpensive to treat at its early stage. However, a significant number of Noma cases do not receive treatment until it is either too late to save their face or, more commonly, their life. With the recommendation to further investigate the beliefs and perceptions of Noma patients to understand their behavior in seeking medical care, the focus in this situation should remain on understanding the underlying causes. This study examined the main reasons Noma survivors initially had for delaying medical care and that eventually motivated them to seek it.

Methods: To achieve the objective of the study, a structured and scheduled qualitative interview was used. A total of 46 Noma cases from different geographic areas in Ethiopia were interviewed in March 2023 to describe the main factors that prevent them from seeking timely medical care and ultimately lead them to seek it. The study participants were asked to indicate their main reason for not seeking medical care soon enough. Then they were asked why they finally decided to pursue medical care. MAXQDA software was used to carry out the data management and analysis of the survey.

Results: Inaccessibility to nearby health facilities, economic constraints, lack of awareness, social stigma and isolation, unpleasant self-conscious emotion, preference for traditional healers, fatalism, and the practice of divination were mentioned by most of the Noma survivors (65.2%) participating in the survey as hindering factors in not seeking medical help early enough. On the other hand, a single factor, i.e., an erroneous spiritual belief such as the view that the disease is a curse and the related perception that the condition cannot be cured, was reported by 34.8% of the study participants as a major factor influencing their decisions. In general, erroneous spiritual belief (34.8%), the practice of divination (15.2%), and the preference for traditional healers (10.9%) were found to be the leading factors for not seeking medical care among adult Noma survivors in Ethiopia. On the other hand, the role of social workers in exploring Noma cases and referring them to health services was rated as excellent.

Conclusion: In order to develop appropriate education, screening, treatment, and care and support models that promote better engagement of Noma survivors, these underlying beliefs must be specifically considered. Policymakers and healthcare professionals must consider these cultural and spiritual aspects when developing culturally appropriate models of care