UK - Department for Business, Energy and Industrial Strategy
The Cultural Contexts of Disease Prevention: The Case of Cholangiocarcinoma in Mainland Southeast Asia
Project Data Last Updated: 27/08/2020
IATI Identifier: GB-GOV-13-FUND--GCRF-AH_R00613X_1
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.Objectives
1. To explore ways of significantly reducing the high number of unnecessary deaths from diet-related cholangiocarcinoma (CCA) in Southeast Asia in general, and specifically in the areas of Northeast Thailand (Isan) most heavily affected by the disease. We aim to achieve this through promoting a more culturally sensitive understanding and approach to behaviours that lead to the development of CCA in the region. 2. To draw on the case study of diet-related CCA in Isan, and more widely in Southeast Asia, in order to foster greater understanding of the cultural factors at play in epidemiology in LMICs; and to thence develop nuanced strategies for making culturally sensitive yet effective public health interventions in connection with a range of global health challenges. Strategies for intervention would be articulated, in part, in the form of journal articles and consultancy papers co-authored by authors from an innovative range of disciplinary backgrounds. 3.To develop a close working relationship between the PI, Co-Is, academic and non-academic partners in Southeast Asia in order to build an in-depth and nuanced understanding of the complexities of the challenge facing medical health workers and public health campaigners in the region in their engagement with diet-related liver fluke infestation (opistorchiasis) and CCA. We believe that this can be achieved only through sensitive, open-minded and respectful engagement across academic disciplines, across languages and across cultures; and, in addition through the careful development of an openness to listen to the lived experience of those at risk of, or diagnosed with, opistorchiasis and CCA. By inviting the latter to participate as co-researchers in their own health concerns our objective is to build capacity from the grassroots in order to develop an engaged and agential involvement in healthcare and wellbeing in the region. The objectives of this approach have capacity building implications for a range of other LMICs as well as those working in public health in the UK. 4. To extend and build upon the network of academics from the fields of medicine and the humanities in the UK and Southeast Asia, and especially Thailand, in relation to opistorchiasis and CCA in Laos, Cambodia and Vietnam. This would be achieved through an engagement, for example, with patients from Laos treated for CCA at Khon Kaen U Hospital; through an engagement with the Pasteur Institute in Vientiane, Laos; in partnership with Grundy-Warr's (NU Singapore) existing work in Cambodia; and through the Wellcome Trust supported work with tropical diseases in Vietnam. Extending the network in a series of workshops and discussion groups beyond the focus point of Isan will permit us to test out the extent to which socio-cultural and politico-historical factors colour the relationship between diet and disease, since although the disease and its diet-related causes remain the same in each case, the cultural contexts in which the disease develops differ to some extent. 5. To explore and advance the effectiveness of multidisciplinary approaches to a specific public health problem as well as to consider the limits of this effectiveness. Our joint workshops and field research activities bring together academics from a range of disciplines that do not normally interact with each other (in medicine, nursing, palliative care, public health, medical and cultural anthropology, cultural studies, history, human and physical geography, ecology, biology, parasitology, socio-linguistics, postcolonial theory, literature, cinema, Buddhist studies and phenomenology.) The academic network would further engage with local NGOs and organisations such as the Buddhist Network for a Good Death and the Thai Palliative Care Society as well as local writers, artists and filmmakers from Isan. 6. To learn from Thai Buddhist approaches to dyingand death as well as to cultural memory that can inform new models of palliative care in the UK
|Extending:||UK Research & Innovation|
|Funding:||UK - Department for Business, Energy and Industrial Strategy|
|Implementing:||SOAS University of London|
Sectors groups as a percentage of country budgets according to the Development Assistance Committee's classifications.
A comparison across six financial years of forecast spend and the total amount of money spent on the project to date.