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- Convenors:
-
Papreen Nahar
(University of Sussex)
Getnet Tadele
Send message to Convenors
- Chair:
-
Shahaduz Zaman
(University of Sussex)
- Formats:
- Panel
- Mode:
- Face-to-face
- Sessions:
- Friday 26 July, -, -
Time zone: Europe/Madrid
Short Abstract:
This panel aims to demonstrate how we can harness the power of medical anthropology to shed light on neglected health conditions and geographies, taking significant steps towards 'undoing' the disparities that persist in the world of knowledge.
Long Abstract:
This panel is dedicated to showcasing the potential of medical anthropology to confront neglect issues in global health. We aim to demonstrate how, through the effective application of medical anthropological concepts and methodologies, we can address neglect at three distinct levels. These dimensions of neglect include I) The Neglect of Stigmatized Neglected Tropical Diseases (NTDs), II) The Neglect of Affected Patients and Communities in Endemic African Countries, III) The Neglect of Medical Anthropology as an Essential Discipline in Global Health.
Amidst the underutilization of the biosocial approach in global health, medical anthropology serves as a vital tool for exploring the complex landscape of these neglected conditions, spanning the "micro," "meso," and "macro" levels. This encompasses the realms of individual illness experiences, healthcare services, and the intricacies of political and policy landscapes. We plan to organize two sessions within this panel. These sessions aim to demonstrate how medical anthropology can unveil the cultural underpinnings, lived experiences and policy environment associated with NTDs, while also showcasing the application of anthropological methods in evaluating existing community interventions designed to mitigate social stigma related to NTDs.
Ultimately, this panel contributes to the broader field of anthropology by addressing and rectifying the imbalances between central and peripheral regions. We harness the power of anthropology to shed light on neglected health conditions and geographies, taking significant steps towards 'undoing' the disparities that persist in the world of knowledge.
Accepted papers:
Session 1 Friday 26 July, 2024, -Kibur Melese Getnet Tadele Gail Davey (Brighton Sussex Medical School) Papreen Nahar (University of Sussex) Shahaduz Zaman (University of Sussex)
Paper short abstract:
This article identifies community agents and settings that can be utilized to extend chronic care interventions to control NTDs in LMICs. Anthropological studies can play prominent role in identifying major actors and settings and how social participation can be enhanced among community groups.
Paper long abstract:
Some Neglected Tropical Diseases (NTDs) are not suitable for drug therapy but require chronic care to manage their impact. Dealing with the impacts of NTDs requires normative changes and this may not be suitable for individual-level public health campaigns. Anthropological insights consider individuals as agents that are influenced by events within the social environment. Provided little has been done in this regard, we explored the possibility of engaging community actors and settings to promote chronic care for the NTD podoconiosis, a debilitating form of lymphedema. Employing a qualitative approach, we gathered data from patients, community members, local health professionals and traditional healers between April and May 2022 in Northwestern Ethiopia. We further observed community settings. We found that patients, family members, religious leaders, traditional healers, and health professionals have the potential to be extenders of chronic care management in rural areas due to their accurate understanding of podoconiosis, willingness to engage in health interventions and influence on rural residents. Houses, churches, schools, healthcare facilities and traditional healing centres are suitable venues at which to perform chronic care. Strong community solidarity and political will are vital to such interventions, while wrong understanding about chronic conditions, financial constraints, and limited resources at healthcare facilities all pose challenges. Employing community agents and settings has great promise for expanding chronic care and reducing stigma with minimal cost and effort. Changing community norms by utilizing these agents is likely to bring sustainable changes. Anthropological studies are essential to identify culturally appropriate chronic care interventions.
Addisu Tsegaye (Brighton and Sussex Medical School) Hayley MacGregor (Institute of Development Studies) Getnet Tadele Gail Davey (Brighton Sussex Medical School)
Paper short abstract:
Unveiling Refugee Health System in Ethiopia: Challenges and the Call for Compassionate Reformation
Paper long abstract:
Ethiopia’s persistent commitment to hosting refugees is underscored by its progressive refugee policy, particularly in providing healthcare. This study explored the refugee health system and responses to scabies in a refugee camp in Ethiopia. We conducted interviews with various key informants, affected individuals, and caregivers. In addition, observations took place at different settings. It reveals that the camp's conditions have reduced refugees to a state resembling Agambenian bare life. The health system endured challenges involving insufficient funding, high staff turnover and lengthy recruitment process, and inadequate facilities. In 2023, over 110,000 refugees relied on a single health centre and health post, competing with illegal private pharmacies. These stem from the absence of a clear strategy for integrating refugee health with the national health system and the health system’s reliance on external funding sources characterised by inherent uncertainty amid global political and economic dynamics. The absence of durable solutions to refugees’ plight has led to overstretched services, trying to accommodate the escalating refugee population in the camp. The research calls for compassionate, committed, and comprehensive responses, including increased funding, strategic retention measures, clear integration strategies, advocacy for stable external funding, and the implementation of durable solutions. Furthermore, a holistic approach to scabies interventions is emphasised, addressing the broader challenges of the camp setting.
Key Words: Bare life, Ethiopia, Health System, Refugee, Scabies
Jean Paul Bikorimana (Brighton and Sussex Medical School) Gail Davey (Brighton Sussex Medical School) Papreen Nahar (University of Sussex) Josephine Mukabera (University of Rwanda)
Paper short abstract:
This paper documented the experience of an intersectional stigma among people with podoconiosis. This underscores the contribution of medical anthropology in mapping health disparities caused by individuals’ positionality and the need to reframe interventions based on social science perspectives.
Paper long abstract:
A growing body of knowledge demonstrates that multiple positionality and identities intersect to shape the experience of stigma. Nevertheless, there remains a significant gap in our understanding regarding the positioning of individuals affected by podoconiosis and the associated stigma. Studies on podoconiosis-related stigma have often focused on individual factors, and often link stigma to podoconiosis features; symptoms or causal beliefs. Taking an ethnographic approach, using the framework of intersectionality, this paper explores the experience of stigma among people with podoconiosis.
Affected people are not stigmatised because of the illness alone, but individuals’ multiple positionality and identities intersect with diverse podoconiosis features –illness stages, chronic nature of the condition, symptoms and cultural understandings –to amplify the overall experience of stigma. People with low social positions and oppressed identities experience a huge amount of stigma. Women and men can be stigmatised, but poor married women and young girls with podoconiosis are highly stigmatised compared to men. This is caused by social positionality, identities, cultural norms, and traditions attached to being poor, female, married or unmarried, and being in rural areas, which all converge to fuel stigmatisation. Interventions to eradicate the stigma experienced by people with podoconiosis need rethinking by focusing on the intersection of people’s identities and positionality in a particular context. This paper sheds light on the contribution of medical anthropology in mapping health disparities and injustices based on an individual’s positionality across affected people and the need to reframe interventions based on social science perspectives.
Richard Kalisa (School of Public Health, University of Rwanda)
Paper short abstract:
Knowing the contextual aspects related to podoconiosis care is required for developing effective interventions. Our findings suggest more emphasis to be paid to sociocultural, economic, political, and geographic domains and how they interact and influence one another for further interventions.
Paper long abstract:
Background: Podoconiosis is a non-infectious tropical lymphoedema that leads to progressive swelling of a uni or bilateral limb. Knowing the contextual aspects related to podoconiosis care is required for developing effective interventions. We evaluated an existing health promotion intervention implemented by an NGO to understand the contextual aspects associated with the reduction of podoconiosis stigma in Musanze district, Rwanda.
Methods: We applied a mixed-methods sequential exploratory design to evaluate an existing health promotion intervention. Quantitative data included 377 household survey. Qualitative data included 6 KII, 36 In-depth interviews with patients and non-patients and four focus group discussions, document analysis of policies, master plans, reports as well as ethnography of implementing NGO.
Results: Our evaluation was based on six contextual domains: sociocultural, economic, political, legal, epidemiological and geographical. Key success within sociocultural included improved early diagnosis and increased awareness. Enacted stigma has decreased but felt stigma remained the same. Politico-legal domains have shown government programmes scale up, and effective teamwork but depended on external resources. Difficult hilly terrain and long distances to reach patients as geographical domain and denial of loans, discrimination of female patients in employment and service access as economic domain consequently lead to continued inability of patients and their siblings to afford buying shoes which prevent them from exposure to irritant volcanic shoes.
Conclusions: Our findings suggest more emphasis to be paid to sociocultural, economic, political, and geographic domains and how they interact and influence one another for further interventions.
Dereje Wonde (BSMS) Kibur Engdawork (Addis Ababa Unviersity, BSMS) Anne Roemer-Mahler Getnet Tadele Mei Trueba (University of Sussex)
Paper short abstract:
Large scabies outbreaks have occurred in the Amhara region, Ethiopia since 2015 and our research explored the local scabies management practices. The health-seeking itineraries of people with scabies have been shaped by the prevailing pluricultural scabies management system.
Paper long abstract:
Large scabies outbreaks have occurred in the Amhara region since 2015 and biomedical interventions focused on mass drug administration are often deployed to contain the disease. However, there is a persistent scabies incidence in different districts of the Amhara region and our research explored reasons for the persistence of scabies despite efforts. Ethnographic fieldwork was conducted from February to July 2022 and included 57 semi-structured interviews, participant observation, and document analysis.
There are mainly two indigenous healing practices available for the treatment of scabies in Debre Elias: holy water and traditional herbal medicine. The cultural competence and affordability of traditional medicine, the perceived cause of scabies and disease conceptualization, and the lack of access to biomedical health services influenced people to seek treatment from traditional sources. The health-seeking itineraries of people with scabies have been shaped by the prevailing pluricultural scabies management system. Most people with scabies initiate their treatment by visiting traditional treatment centres and finally end up in the biomedical setting. The indigenous scabies treatment served as an initial scabies management option. However, the biomedical actors did not recognize the role of the indigenous healing and often held antagonistic views toward the functions of traditional healers. The existence of pluralistic scabies treatments should be seen as an opportunity not as a liability for scabies control and mechanisms should be devised to bring the traditional healers and biomedical practitioners to collaborate in responding to scabies.
Badraldeen Alnoor (University of Brighton) Papreen Nahar (University of Sussex) Osama Abu Zied (Brighton and Sussex Medical School BSMS) James Fairhead (Sussex University)
Paper short abstract:
The study is an exploration of links between the environment and Mycetoma within an environmentally based livelihood system in Sudan. Using in-depth interviews, observation, and focused group discussion, injury frequency while practising these activities is found to increase Mycetoma risk factors.
Paper long abstract:
For decades, poor Sudanese communities in rural areas have silently battled Mycetoma, a stigmatizing, disabling neglected tropical disease. Its linkage to specific, ecology-dependent livelihoods like farming, wood cutting and collecting, and animal herding has obscured its cause and environmental dimensions both on a local and a global level. Challenging the prevailing singular focus on thorn injuries that over-flooded biomedical research for years, this ethnographic study sheds light on diverse potential causal factors and possible risk exposure pathways. Through participant observation, in-depth interviews and focused group discussions, we reveal that not only thorn pricks, but also injuries from agricultural tools, 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 risk to further injuries. These findings necessitate a global re-evaluation of Mycetoma's causality, shifting the paradigm beyond a single lens of thorn trauma and exploring potential new risk factors. They pave the way for a holistic understanding that integrates medical interventions with environmental and social determinants. By uncovering the hidden complexity of Mycetoma, we open doors to prevention strategies that triumph over neglect.
Ursin Bayisenge (Brighton and Sussex Medical School) Gail Davey (Brighton Sussex Medical School) Peter John Mugume (University of Rwanda) Shahaduz Zaman (University of Sussex)
Paper short abstract:
This study explored the experiences of Congolese refugees with scabies in Rwanda's Kigeme camp. Initial stigma was due to misconceptions and it changed nuances over time. Refugees' suffering is rooted in structural violence. Medical anthropology is vital to understanding the neglect of scabies.
Paper long abstract:
This study explored the experiences of Congolese refugees living at Kigeme camp in Rwanda who were affected with scabies, and examined the perceptions of their condition and the impact of community discontent on them. The study used qualitative research methods, including interviews, observations, and focus group discussions.
The findings revealed that respondents initially thought that scabies as a sign of opportunistic diseases caused by HIV, poor hygiene and lack of healthy food, but later realized that anyone could contract scabies, leading to a shift in stigma. However, the stigma associated with scabies persisted. The only available treatment, benzyl benzoate, was not well received due to its unpleasant odour.
The study argued that the suffering of refugees is rooted in the structural violence embedded in their global governance system, with conflicts between Rwanda and the Democratic Republic of Congo playing a significant role in the displacement of the Congolese population. The United Nations High Commissioner for Refugees is unable to contribute effectively to the prevention of such conflicts. The study highlighted the need for accurate and comprehensive conversations about the situation of Congolese refugees to address their neglect and improve their access to healthcare.
This study contributed to understanding the stigma associated with visible skin diseases, the unintended consequences of humanitarian assistance, and the potential role of popular medical systems in improving healthcare practices. It also showed that medical anthropology is crucial for understanding the social, economic, and political factors that contribute to the ongoing neglect of scabies in refugee camps.
Osama Abu Zied (Brighton and Sussex Medical School BSMS) Shahaduz Zaman (University of Sussex) Papreen Nahar (University of Sussex) Maya Semrau
Paper short abstract:
This study evaluates digital media interventions for Mycetoma in Sudan using in-depth interviews, and focused group discussions. Digital media was found to focus on Mycetoma biomedical aspects without adequately addressing its interconnected social factors, specially stigma.
Paper long abstract:
Mycetoma, a disfiguring and debilitating neglected tropical disease (NTD), long languished in obscurity. Prior to 2013, limited research, ineffective treatments, and inadequate global recognition plagued the disease. However, recognizing advocacy as a critical missing link, the Drugs for Neglected Diseases Initiative (DNDi) spearheaded efforts to raise awareness and address knowledge gaps and Mycetoma was included in the 2016 WHO NTD list thereby, spurring further global attention, research, and media engagement.
This study delves into the role of digital media interventions in raising awareness and combating Mycetoma neglect in Sudan.
Employing an anthropological lens, we critically evaluate the production and impact of these interventions, focusing on a short film titled "Hope for a Devastating Neglected Tropical Disease”. Through in-depth interviews with Sudanese media specialists and focused group discussion with community members, we analyze the film's content, visual representation, and perceived effectiveness in addressing interconnected sociocultural factors.
Our analysis sheds light on the complex interplay between digital media, global health initiatives, and local communities in the fight against NTDs. The initiative was found to address Mycetoma biomedical aspects while not adequately considering significant societal factors, influencing health outcomes, especially stigma. By critically examining the narratives and power dynamics embedded within these interventions, we contribute to a nuanced understanding of their potential and limitations in addressing public health challenges in the Global South. Our study suggests that digital media alone cannot bridge the chasm of global health disparities. Unveiling the neglect requires deeper, culturally sensitive anthropological insights to inform interventions advocating for NTDs.
Hala Elmalik (Brighton and Sussex Medical School) Shahaduz Zaman (University of Sussex) Osama Abu Zied (Brighton and Sussex Medical School BSMS) Maya Semrau
Paper short abstract:
The aim of this study is to explore the health-seeking behaviour for scabies among South Sudanese refugees in Bantui. The study was conducted using in-depth interviews, participant observation, and focused group discussions. It was found that participants treat scabies using homemade remedies.
Paper long abstract:
The aim of this study is to explore the health-seeking behaviour for scabies among the south Sudanese refugees in Bantui, Khartoum, which included a total of 47 participants. The study was conducted using qualitative methods including in-depth
interviews, participant observation, and focused group discussions.
Bantui is an open space (ex-refugee camp) that includes around 35,000 residents, with only one health care service provider called Al-Manar charity organization. That offers a mobile clinic twice a month to see 20 patients from Bantui and 20 patients from the hosting community because they have limited working hours due to security reasons.
It was found that scabies is a stigmatizing condition for South Sudanese, known as “Ashwajang” in slang language. For managing it back in South Sudan, they used particular trees, cow urine, and other cow elements. However, because these components are not available in Bantui and because of the minimal health service, participants tend to treat scabies using certain homemade remedies due to their availability and affordability, including oil, salt, and lemon. The study shows in addition to various cultural beliefs and health practices, various structural factors like lack of water, small housing, lack of health service providers, and scabicide shortages influence refugees health-seeking behaviour.
Failure to purchase medicines and prematurely discontinued medications due to the non-availability and unaffordable cost of medicines explain how an underprivileged population suffers from a disease poverty trap and health disparity. This study demonstrates how the health of South Sudanese refugees in Bantui is influenced by structural violence.
Mariela Sánchez-Belmont Montiel (The University of Manchester)
Paper short abstract:
The paper examines how the design and implementation of the policies to care for and prevent Chagas Disease in Mexico are designed to care for the patients but have blind spots where neglect is (re)produced.
Paper long abstract:
Chagas Disease has long been included in the WHO list of Neglected Tropical Diseases. However, what does it mean for a disease to be neglected, in practice? Who is doing the neglect, and how?
This paper takes the case of Chagas Disease in the Mexican health system to examine the role of the national state in producing one of the ways in which the disease is neglected: through policy design and implementation. After 12 months of fieldwork within the Mexican national health secretariat, this research explores how a policy that aims to deliver care -and, to an extent, does-, also produces the blind spots through which neglect is produced and reinforced: cases that fall through the cracks, epidemiological reports that veil realities on the ground, and manuals that are not fit for purpose. The paper explores some of the historical and geopolitical elements that have played a role in this policy design such as the close involvement and collaboration with international organisms (i.e. WHO/PAHO), neoliberal trends of decentralisation of public services in the 1990s, and a modern push for systems of accountability and evidence-based decision-making. The paper finishes with a reflection around the role that Medical Anthropology could have in understanding health policies as lived processes rather than flat documents, with the aim of closing some of the gaps that are created by a public health ecosystem that favours fragmentation.
Rakesh Chand (University of Cambridge)
Paper short abstract:
In Nepal, Rabies persists and lives are lost yearly despite control efforts. Policy gaps are rooted in socio-cultural nuances, bureaucratic intricacies, and underestimation of cases. Urgent scrutiny is needed for informed policies, reducing fatalities.
Paper long abstract:
Disease burdens disproportionately affect the developing, resource-limited, and marginalized regions of the world, not solely due to a lack of resources or technology, but often stemming from the challenges in implementing health policies and programs. Rabies serves as a poignant illustration. Although an effective vaccine has existed for 138 years, the disease still exacts a heavy toll on human and animal lives in developing countries. In Nepal, the persistent threat of Rabies continues to claim numerous lives each year, despite decades of control efforts. The disconnect between grassroots realities and policy formulation arises from insufficient comprehension of disease dynamics influenced by socio-demographic, cultural, and economic factors. Internal bureaucratic complexities within government health institutions, coupled with personal interests and political considerations, shape the design and execution of disease control programs. The ongoing fatalities are exacerbated by a lack of understanding of bite victims' treatment-seeking behaviour, challenges in accessing and affording post-exposure prophylaxis for different population groups, and societal attitudes toward free-roaming dog populations, influenced by superstitions and local beliefs. This knowledge gap not only leads to the underestimation of annual bite and rabies cases but also results in a lower prioritization of the disease. Moreover, critical scrutiny is warranted in assessing the government's vaccine supply, the rationale behind various rabies control initiatives, and the implementation of surveillance systems. Bridging these gaps in understanding and prioritization is essential to inform evidence-based policies, ultimately reducing the human and animal toll inflicted by Rabies.
Bewunetu Zewude (Addis Ababa University) Getnet Tadele
Paper long abstract:
Scabies is a neglected tropical disease (NTD) with high prevalence rate in resource limited settings. Though susceptible because of lack of sanitation and contact with vectors, attempts to identify street children’s lived experiences of NTDs in the global south remained a neglected issue.
This study explored the lived experiences of scabies among street children in Addis Ababa. Using an in-depth interview method, we collected qualitative data from selected children of the street to identify their understanding of the causes of scabies, their experiences of managing the condition, and their health seeking behavior. Informants were recruited considering maximum variations in terms of age, sex, and experience of infection.
The study found high susceptibility to scabies with its physical, psychological and social impacts. The study participants believe that scabies has its origin in their living conditions such as poor environmental sanitation and lack of personal hygiene while louse playing a significant role as the vector of its transmission. The informants reported visiting modern healthcare facilities, traditional healers and self care to respond to infection
By uncovering the embodied experience of a stigmatized skin neglected tropical disease among a neglected community in global south, the study demonstrates the contribution of medical anthropology in combating neglect and addressing health disparities. Identifying their living condition as the major factor contributing for street children’s susceptibility, we recommend efforts of changing this through reunification, reintegration and other viable exit strategies from the street.
Key Words: Scabies, Street children, Susceptibility, Living condition, Health seeking behavior, Ethiopia
Fabienne Valmond (University of Helsinki)
Paper short abstract:
The paper explores the significance of online forums in supporting the reproductive health of African-descended women in Northern Europe. Through digital and autoethnography, the study investigates how women utilize online resources for support and information.
Paper long abstract:
The paper explores the significance of online forums in supporting the reproductive health of African-descended women in Northern Europe. While structural racism and migratory status can limit their access to public health and shape their encounters with medical professionals and institutions, infertility forums function as a space where women hoping to conceive can acquire and contribute to knowledge and encourage each other. Through digital and autoethnography, the study investigates how African-descended women in Northern European welfare states navigate the complexities of reproductive healthcare and utilize transnational, online resources and communities for support and information. The forums offer a perspective on medical pluralism in women’s lives: my ethnography shows how people navigate infertility in the margins of public healthcare systems by balancing home remedies, biomedicines, religious healing, and other complementary treatments and how these frames of knowledge are reproduced and indexed in online interactions. The analysis highlights the significance of digital networks in enabling access to culturally relevant and language-appropriate information and fostering a sense of community and solidarity, but also acknowledges the limitations and challenges of online support networks, including issues of trust, credibility, and privacy.
Shahana Siddiqui (University van Amsterdam)
Paper short abstract:
Public health response to sexual violence in Bangladesh emerged out of activism, operationalized as a development intervention, seldom viewed as a health crisis. Ethnography provides an insight into the subjective nature of health provisions towards sexual assault, continuing health disparities.
Paper long abstract:
Despite the economic progress of the country, Bangladesh continues to have high rates of incidences of violence against women. Over the years, through civil society activism and government cooperation, one stop crisis centers have been established throughout the country. Yet, there is limited information and understanding of how exactly does the health system work when providing services to survivors. By conducting an extensive hospital ethnography at the largest teaching hospital in Bangladesh, an in-depth understanding of public health responsiveness to sexual violence comes to light, along with uncomfortable truths about sexual relations, sexuality, class relations, and subjective nature of authoritative knowledge in regards to female bodies and gendered health. This paper argues that the undermining nature of the health sector towards issues of violence against women, perpetuates a culture of health disparities against women in Bangladesh. While medical anthropology was able to shed some light on to this ongoing "neglect" in gendered health services, this part of medical provision in Bangladesh require further inquiry in bringing about health equity and social justice for women and survivors.