The Cultural Contexts of Disease Prevention: The Case of Cholangiocarcinoma in Mainland Southeast Asia

Lead Research Organisation: School of Oriental and African Studies
Department Name: Sch of Languages, Cultures & Linguistics

Abstract

The Northeast region of Thailand - known locally as Isan - is home to the highest rates of bile duct cancer (cholangiocarcinoma, hereafter CCA) in the world. While CCA is normally rare, Isan reports a record number of over 20,000 cases a year. Furthermore, CCA is also prevalent in most rural communities along the Mekong River in Southeast Asia, in Cambodia, Laos and Vietnam. CCA in this region of the world results from a neglected tropical disease, chronic liver fluke infection, caused by the consumption of raw or undercooked freshwater fish infected with Opisthorchis viverrini (hereafter OV). OV was identified by the WHO in 2012 as a Class I carcinogen. Infection carries no symptoms and, with each fluke able to live in the bile duct for up to twenty years, the slow development of CCA remains asymptomatic until the later stages of the disease. As a result, less than 5% of cases are operable and five-year survival rates among those treated are also low. In the remaining cases, the only option is palliative care. CCA is a silent killer in Isan and its neighbouring countries, responsible for the devastation of impoverished rural families whose key earners can be struck down by the disease in later life; but it also frustrates medical specialists because the eradication of OV infection would prevent most cases of CCA altogether, hence saving thousands from dying a painful death. The complexity of the problem is not, however, solely a medical one but rather one that requires a sustained and respectful engagement between medicine, the social sciences and the humanities in order to address in the most nuanced and rigorous ways, the range of issues relating to persistent OV infection in the region: most notably the fact that infection occurs as a result of dietary practices associated with deeply ingrained notions of cultural identity relating to the practice of eating "raw" that has defined the region for many centuries.
In Thailand public health campaigns in operation since the 1950s have had limited success in effecting behaviour change and, crucially, in combatting the prevalence of OV infection and CCA. This may in part be due to the top-down, Bangkok-centric, nature of public health intervention in Thailand, one which is persistently coloured by hierarchical beliefs in the fundamentally "uncivilised" nature of cultural and dietary practices in Isan. Nineteenth century history tells of the internally colonising impact of the newly forming Siamese nation-state, the politico-cultural effects of which persist up to the present day. These historical remnants continue to drive all aspects of interaction between the centre and the periphery, the capital and the countryside in contemporary Thailand. To more fully comprehend, and hence be in a position to respond thoughtfully and effectively to, the culturally embedded behaviour and practices at play in persistent OV infection and subsequent CCA, this project proposes a radical multidisciplinary collaboration, the aim of which is to attend holistically to this neglected disease and its causes. By addressing the very specific medical problem of CCA in Isan from a wide variety of differing yet interrelated perspectives (those of public health and hygiene, epidemiology, parasitology, biochemistry, religious and spiritual belief patterns, history, geography, anthropology ecology, psychology, phenomenology, socio-linguistics, postcolonial theory, literature, the arts and and cultural studies) we seek out the connections that pertain across disciplines in the need to tackle diseases that evidently relate to cultural and community-based practices. Our ultimate aim is to draw upon this multidisciplinary approach to effect a wider impact on the current state of knowledge regarding behaviour-related diseases in a range of other LMICs, as well as in the UK.

Planned Impact

We aim to try to reduce the number of deaths from diet-related CCA.To fully comprehend, respect and work with the various human drives that persist behind continued cases of opistorichiasis and CCA in the region, as we seek to do from a range of disciplinary perspectives, offers the best hope of engaging those at risk from the disease in having an informed, agential and balanced choice over their lifestyle, dietary habits and expressions of their cultural identity.
1. People in LMICs at risk of CCA.
People exposed to high rates of opistorchiasis in the regions in this project are 100 times more likely to develop CCA than people in Europe. 20,000 people are diagnosed with CCA in Isan each year. Asymptomatic until a late stage of the disease, CCA is difficult to detect early enough for surgery and other forms of treatment to be effective. Only a small number of cases are treatable and the majority are terminal within a number of months and involving great physical suffering. Families are often left in economic hardship as a result the death of breadwinners. For those working in the medical sciences, CCA presents a source of frustration given their conviction that the high incidence of CCA could be dramatically decreased by the eradication of opistorchiasis as a result of dietary change. Since the medical aspiration to render Thailand an entirely fluke free environment is almost impossible to achieve, medical science advises that people in regions prone to liver fluke (OV) should desist from eating raw and undercooked cyprinid fish. Although, on the face of it, dietary change offers a simple medical solution, in cultural terms it is a much more difficult issue to address, and for a range of different reasons. Public health campaigns in Thailand have engaged with the question of opistorchiasis since the late 1950s but have proven relatively ineffective. This is not simply because the widely available supplies of cyprinid fish provide a source of affordable protein in a relatively impoverished and infertile region of the world; it is further the case that in Isan, and other parts of mainland Southeast Asia, eating 'raw' is a deeply culturally embedded practice, connecting with questions of cultural identity, with definitions of community and, sometimes, with demonstrations of masculinity.

2. Local NGOs and public health volunteers
The project will draw the processes and outcomes of this multidisciplinary approach to research into dialogue with health workers, local health volunteers, schoolteachers, monks, community leaders and other community organizations in the region affected by CCA. By engaging horizontally with all parties concerned, the project will devise ways in which the arts and the humanities (including music, film, painting and literature) can offer inspiration in the effective dissemination of public health information in a way that is fully respectful of local community identities and the context of their wider health and economic concerns. This has the potential to reduce the extent of opistorchiasis and subsequent CCA in the region and to free up the energies of public health workers to focus on other health issues of concern such as dengue, HIV and other forms of behaviour-related cancers, while opening up new approaches to public health campaigning.

3. Palliative care workers in the region and beyond.
Interdisciplinary arts and humanities research into CCA provides opportunities to explore new approaches to palliative care, including engagement with Buddhist monks in Thailand specialising on the spiritual dimensions of dying and death, such as Phra Paisal Visalo. This has the capacity to produce new model approaches that are transferrable to palliative care in the UK.

The broadest impact of this research project on CCA in Southeast Asia as a case study lies in its relevance to the understanding of the cultural foundations of disease; and the ways in which we may collectively redress poor health.
 
Description Exploring the cultural contexts of disease prevention - in this instance with specific reference to the case of bile duct cancer (cholangiocarcinoma/abbrev. CCA) in mainland Southeast Asia - was always going to be a major challenge. This unprecedented collaboration between surgeons, biochemists and parasitologists, largely based at CASCAP (the Cholangiocarcinoma Screening and Care Program), Khon Kaen University in Thailand, and academics, both Thai and Western, in a range of disciplines from the humanities and the social sciences, required us to develop nothing less than new forms of academic communication. Our three workshops, paced throughout the project, moved incrementally towards this goal, closing in September 2019 with a greater ability to listen carefully and openly to each other's primary concerns and priorities; to recognize disciplinary blind spots and preoccupations; and to accommodate them within the framework of important language and cultural differences across the body of collaborating researchers. In light of this, the project was successful in convincing the CASCAP team that their public health interventions in the case of CCA prevention in Northeast Thailand and Lao PDR required greater socio-cultural nuance. While testing populations for parasite (OV) infection and offering public health advice on the safe preparation and consumption of raw fish, our Thai and UK Co-Is acknowledged that eradicating the predilection for such culturally embedded diets in the region was not only impossible, but socially unadvisable. Emphasis must instead be placed on early (ultrasound) screening as far as possible, at least among the older generation, whose food habits were unlikely to change. Our medical colleagues came to acknowledge the complexity and wider disadvantages of enforcing behavioural change; or of directing it from a position of social and cultural superiority. They also came to (tacitly) acknowledge the pervasive role of politics and coloniality in the broadest sense of those terms, on the question of healthcare, in particular in relation to a region dogged in recent years by disenfranchisement by the Bangkok elite/centre. Operating in a country under military rule since May 2014, local medical teams were anxious to distance themselves from the question of politics and freedom of speech in order to be able to fundraise and function effectively within the given system to save people's lives through medical intervention. At the same time, however, the broader context of disease and public health delivery investigated through the lens of the social sciences and the humanities, required us to collectively develop ways in which could safely and ethically open up difficult yet important concerns. Decoding not only language but also cultural difference became an essential tool to be honed in the process of undertaking this work, allowing the humanities to participate in life-saving agendas normally preserved only for the hard sciences. As a result, new approaches to medicine prioritized grassroots, bottom-up engagement in questions of health and wellbeing that grant agency to patients in systems that, though benevolent, also risk marginalising and alienating the very people they intend to help, to treat and to cure.
Exploitation Route The outcomes of the award have direct implications for the delivery of public health initiatives in relation to diet-related disease in North East Thailand and Lao PDR. This refers not only specifically to the case of OV-infection and subsequent CCA in the region, but also to a range of other diseases with a basis in cultural practice. By further implication, this extends to wider questions of diet and well-being in the broader sense of the term. Our principal research finding - that the traditional power dynamics of patient healthcare in Thailand have made it difficult (undesirable even) to secure active engagement in the patient's own commitment to wellbeing - imply a need for bottom-up approaches to be encouraged and take root. This can be taken forward in future intervention by both medical personnel and by academics in the humanities and social sciences committed to continuing work along interdisciplinary lines. In the follow-on funding for impact relating to the project we have begun to explore ways in which people can be invited to express and relate more effectively to a wide range of health concerns shaped by their own daily life experiences rather than by overarching medical agendas.
Sectors Agriculture

Food and Drink

Education

Healthcare

 
Description The outcomes of the award have direct implications for the delivery of public health initiatives in relation to diet-related disease in North East Thailand and Lao PDR. This refers not only specifically to the case of OV-infection and subsequent CCA in the region, but also to a range of other diseases with a basis in cultural practice. By further implication, this extends to wider questions of diet and well-being in the broader sense of the term. Our principal research finding - that the traditional power dynamics of patient healthcare in Thailand have made it difficult (undesirable even) to secure active engagement in the patient's own commitment to wellbeing - imply a need for bottom-up approaches to be encouraged and take root. This can be taken forward in future intervention by both medical personnel and by academics in the humanities and social sciences committed to continuing work along interdisciplinary lines. In the follow-on funding for impact relating to the project we have begun to explore ways in which people can be invited to express and relate more effectively to a wide range of health concerns shaped by their own daily life experiences rather than by overarching medical agendas. As a result we are therefore working towards developing public health information that is sensitive to power dynamics and local agency, as a follow on to the original research project. We are further working with local writers, artists and filmmakers to invite people at the grassroots level to develop their own voice in relation to health concerns over a range of areas relating to diet and disease.
Sector Healthcare
Impact Types Cultural

Societal