AbstractMycetoma is a chronic, granulomatous, devastating, and neglected disease occurring in tropical and subtropical regions. Sudan has recorded the highest number of mycetoma patients in the world, and has high poverty rates and an increasingly young age distribution, yet little is known about the social, political, and cultural aspects of the disease in the country. This thesis is the first study exploring mycetoma disease in Sudan using qualitative methods. It presents an indepth analysis of the disease through the lenses of critical medical anthropology theory.
By adopting a qualitative ethnographic approach, the study uncovers the intricate power dynamics among diverse stakeholders at different levels, influencing the management of mycetoma and shaping the experiences of those affected. Through the inclusion of key Sudanese actors, such as individuals with mycetoma, carers, traditional healers, community members, healthcare providers, policymakers, and researchers, a holistic understanding of the disease’s sociocultural and policy contexts is achieved.
Drawing from empirical data and ethnographic insights, the thesis first highlights the lived experiences of individuals affected by mycetoma, revealing the multifaceted impact of the disease on their livelihoods and social integration. I show how individuals with mycetoma simultaneously suffer from different forms of stigma – felt, enacted, and institutionalised – and I illustrate the different sources of stigma: from caregivers, families, community, and even healthcare providers.
The thesis also explores the failures of a global health intervention, that of the artificial animal enclosure, and through this example I emphasise the importance of understanding local communities’ views of healthcare initiatives, and argue that a culturally sensitive approach to planning interventions and policies is essential to ensuring their effectiveness and sustainability. The thesis then delves into medical pluralism dynamics and their implications for mycetoma management, recognising traditional healers as key healthcare providers in the local context and underscoring the importance of incorporating their knowledge into health strategies. I identify new treatment pathways, cultural concepts, and beliefs in mycetoma management.
In exploring these issues, in this thesis I explore the politics of mycetoma management, and place mycetoma within the broader policy context, analysing existing national policies, strategies, and guidelines related to the disease’s management in Sudan. The role of the Mycetoma Research Center (MRC) as a dominant player in the field is scrutinised, and the power dynamics that influence the implementation of mycetoma-related policies are explored. Through this exploration, I contend that a comprehensive response to mycetoma necessitates addressing power imbalances and engaging various stakeholders, including the Federal Ministry of Health, in coordinated efforts.
By illuminating the social, cultural, and policy climates surrounding mycetoma disease, this thesis emphasises the need for stigma reduction strategies, the importance of addressing power imbalances within the policy landscape, and the potential for collaboration between traditional and modern healthcare providers to improve mycetoma care in Sudan, hoping to assist the development of evidence-based prevention and response interventions that are inclusive, culturally sensitive, and contextually appropriate.
|Date of Award
|Shahaduz Zaman (Supervisor) & Mei Trueba (Supervisor)