Sick with Sugar: the Sociocultural Dimensions of Managing
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SICK WITH SUGAR: THE SOCIOCULTURAL DIMENSIONS OF MANAGING DIABETES IN A SEMI-URBAN INDIAN TRINIDADIAN COMMUNITY by Vishala Parmasad M.Sc., University College London, 2009 M.B.B.S., University of the West Indies, 2007 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Anthropology) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) January 2019 © Vishala Parmasad, 2019 The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled: Sick with sugar: The sociocultural dimensions of managing diabetes in a semi-urban Indian Trinidadian community submitted by Vishala Parmasad in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Anthropology Examining Committee: Dr. William H. McKellin Supervisor Dr. Kirsten Bell Supervisory Committee Member Dr. John Barker Supervisory Committee Member Dr. Gaston Gordillo University Examiner Dr. Gerry Veenstra University Examiner ii Abstract This dissertation comprises ethnographies and narratives of the ways in which Indian Trinidadians in Debe, Trinidad negotiated their life-worlds, life-course expectations, and ethnic identities around Type 2 diabetes mellitus with family, food, and religion as central themes. In overview, this research explores how Type 2 diabetes mellitus, popularly known as “sugar”, is constructed and responded to, as well as the impact of inequities in access to healthcare on people’s ability to manage this disease. Diabetes is the second most common cause of death in Trinidad and Tobago, and has highest estimated prevalence among Indian Trinidadians. Much of the discourse in Trinidad blames high local rates of Type 2 diabetes mellitus-associated mortality and morbidity on unhealthy patient practices and lifestyles. Through participant observation, interviews, and archival research, I explored normative biomedical notions of disease and untangled who is affected by a diabetes diagnosis, how they are affected, and what they do when their lives change, or to change their lives in this context. This research revealed some ways in which overly simplistic notions of patient autonomy projected upon complex, enmeshed societies and polities can be translated as ineffective recommendations for disease management, producing unintended and detrimental changes to people’s life-worlds. Understanding diabetes and its management in Debe required not only understanding the pathological or biological disease process, but more crucially, the explanatory models of people with this diagnosis, how they coped with associated illness, and the crucial communities of care that facilitated therapeutic efforts. Particularly important were narratives of persons with diagnosis of diabetes, and their caregivers. The case narratives produced are grounded in the ethnography of an economically heterogeneous community that has undergone many transitions in the recent past, including the rise in the rates of diabetes and resultant transformations of everyday socialities. These stories are therefore also inherently concerned with temporality on different scales: the progression of a disease over time, the changes in an individual life course over time, and the temporal shifts in a community as it moves from a shared, agricultural past to an uncertain and multitudinous future. iii Lay Summary This dissertation explores the experiences of Indian Trinidadian people in Debe, Trinidad with Type 2 diabetes mellitus through narratives, family histories and case studies of its effects on them and their families. Type 2 diabetes is the second most common cause of death in Trinidad and is particularly common amongst Indian Trinidadians above 50 years of age. Diabetes is a chronic disease that challenged people’s formed identities by requiring changes to their patterns of consumption, commensality and social interaction in their everyday lives, either through the development of illness, or through their attempts to meet management recommendations. This research showed that limitations to the accessibility of healthcare and its provision by the public health care sector in Trinidad also negatively impacted people’s ability to manage their disease. iv Preface This dissertation represents original work by Vishala Parmasad, who is the sole author and designed, performed, and analysed all research herein. Any errors are the responsibility of Vishala Parmasad alone. This research was approved by the UBC Behavioural Research Ethics Board under the title “Is better man belly buss than good food waste": The sociocultural dimensions of Type 2 diabetes in Penal, Trinidad,” Certificate Number H12-03077 with Dr. William H. McKellin as Principal Investigator. v Table of Contents Abstract ......................................................................................................................................... iii Lay Summary ............................................................................................................................... iv Preface .............................................................................................................................................v Table of Contents ......................................................................................................................... vi List of Figures ................................................................................................................................. x List of Abbreviations ................................................................................................................... xi Glossary ....................................................................................................................................... xii Acknowledgements ...................................................................................................................... xv Dedication ................................................................................................................................. xviii Chapter 1: Introduction: The field and what is at stake ............................................................1 1.1 Overview and purpose ....................................................................................................... 1 1.2 Trinidad and Tobago today ................................................................................................ 5 1.3 Debe in historical context .................................................................................................. 7 1.4 The field: Local geography, administration and health care provision in Debe .............. 19 1.4.1 Local geography and administration ......................................................................... 19 1.4.2 Health care in Debe ................................................................................................... 21 1.5 As is the building plan, so is the cosmic plan: Shambho Trace and Debe Main Road .... 22 1.5.1 Kinship, family and community ............................................................................... 24 1.5.2 Hinduism and Indian Trinidadian ethnic identity in Debe ........................................ 29 1.5.3 Food, tradition, and Indian Trinidadian ethnic identity ............................................ 35 1.6 Ethnic identity formation and maintenance ..................................................................... 39 vi 1.7 Chapter progression ......................................................................................................... 46 Chapter 2: Research approach: Conceptual and methodological issues ................................48 2.1 Illness narratives .............................................................................................................. 49 2.2 Life-worlds, cultural schema and explanatory models .................................................... 52 2.3 Non-compliance: A postcolonial disorder of ethnicity? .................................................. 56 2.4 My location in the field .................................................................................................... 61 Chapter 3: “Sugar”: Diabetes in clinical, historical, and Trinidadian context ......................64 3.1 Diabetes: Clinical definition, complications, classification ............................................. 64 3.1.1 History of diabetes and the rise of biomedicine ........................................................ 69 3.1.2 The World Health Organization in diabetes diagnosis and classification ................ 75 3.1.3 Standards for diabetes management in Trinidad and Tobago ................................... 80 3.2 Race, ethnicity, diabetes and genetics .............................................................................. 84 3.2.1 Diabetes rates and ethnic and racial attribution in Trinidad ..................................... 87 3.2.2 Critiques of estimations of diabetes prevalence in Trinidad ..................................... 91 3.3 Structure of the health care sector in Trinidad ................................................................. 94 3.3.1 Public Healthcare ...................................................................................................... 95 3.3.2 Private Healthcare ..................................................................................................... 98 3.3.3 Governmental