Abstract
For decades, poor Sudanese communities in rural areas have silently battled mycetoma, a stigmatizing and disabling neglected tropical disease. Mycetoma’s linkage to specific ecology-dependent livelihoods like farming, woodcutting and collecting, and animal herding has obscured its risk factors and cultural and environmental dimensions on both local and global levels. Although mycetoma has been extensively researched, most of the studies, with a few exceptions, have focused on mycetoma as a ‘disease’, reflecting the biomedical stance. Neglecting the sociocultural and environmental perspectives in mycetoma research has created a critical knowledge gap. Thus, this study aims to bridge this gap by exploring the linkages between ‘culture’, environment, and mycetoma in the context of White Nile state, El Dueim locality, Al-Andalous area of Sudan.The study deploys a qualitative and ethnographic approach through field and participant observation; in-depth interviews with mycetoma patients; focus group discussions with farmers, animal herders, woodcutters and collectors; and key informant interviews with healthcare providers, traditional healers, community leaders, and local authorities.
This study reveals that agro-pastoral livelihoods and woodcutting put people at greater risk of injuries. Yet it corrects the prevailing singular attention to the thorn injuries that have dominated biomedical perspectives for years by drawing attention to more diverse potential risk factors for cuts. This study has also shown that both cultural and environmental practices were likely to be significant in introducing the mycetoma causative agent to the human body through more diverse possible risk factors. For instance, not only thorn pricks but also injuries from agricultural tools, bamboo sticks, glass, seasonal cracks, and even stepping on gravel may introduce mycetoma causative agents. Moreover, structural forces such as failed irrigation systems, especially during the rainy season, and flooding hazardous materials were found to also increase exposure to cultural-related risks that introduce further injuries. Furthermore, these structural forces have led to changing in grazing patterns by bringing livestock into houses, leading to more injuries and cuts for non-herders and family members, mainly women, reflecting the gender aspect of the affliction.
This study also reveals how the lived experience of mycetoma patients is shaped and influenced by the immediate social environment, which plays a pivotal role in health-seeking pathways. The lived experience of mycetoma patients provides insights into their beliefs about the disease, its local terminology, and the profound impact it has on their lives and their families. It also unveils that some of the biomedical treatment can act as a direct cause of stigma, where patients are stigmatized not only because of the illness but also because of the mode of treatment, especially amputation, which creates a severe social stigma for the patients and their family. It also identifies certain factors that influence the health-seeking behaviours of mycetoma patients as they are found to rely on a range of types of traditional medicine at the disease onset stage. These findings make a significant contribution to mycetoma research by highlighting the importance of community-level knowledge alongside scholarly and scientific perspectives. This necessitates a global re-evaluation of mycetoma risk factors, moving beyond the narrow focus on thorn injuries. These findings suggest that it is essential to challenge elitist perspectives in understanding the risk factors of disease and to value the insights of laypeople that can lead to new frontiers in mycetoma knowledge. By incorporating the sociocultural dimensions of the disease, the study advocates for a holistic approach that integrates medical, environmental, and social determinants. Overall, this comprehensive understanding paves the way for effective prevention strategies, addressing previously neglected aspects of mycetoma.
| Date of Award | Aug 2024 |
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| Original language | English |
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| Supervisor | Papreen Nahar (Supervisor), James Fairhead (Supervisor) & Dr Osama Abu Zaid (Supervisor) |