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Narratives of Neglect

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Narratives of Neglect Narratives of Neglect Privileging the priorities of affected persons to support health systems strengthening and the development of equitable people-centred responses to Neglected Tropical Diseases in Liberia Thesis submitted in accordance with the requirements of the University of Liverpool for the degree of Doctor in Philosophy by Laura Charlotte Dean December 2019 1 Abstract People-centred health systems are critical to ensure the efficient, effective and sustainable attainment of Universal Health Coverage (UHC). People-centred health systems value a move away from vertical to integrated service delivery that focuses on the needs and values of people. Neglected Tropical Diseases (NTDs) are a diverse group of communicable diseases categorised together due to their geographical spread and neglected status. There is significant evidence of the mutually reinforcing social and economic implications of NTD morbidity and associated disability. However, historically, NTD programmes have been highly verticalized, drawing on biomedical framings of disease control and management, with minimal consideration of social determinants. The multiple and intersecting inequities that shape disease risk and outcome are seldom explored, and there is a lack of data that fully elucidates the illness experience of NTDs by affected persons. However, an emerging paradigm shift within the NTD community suggests the need for better integration with the wider health system, and more holistic approaches to the management of NTDs. This includes disease management, disability, and inclusion (DMDI) strategies that align to the development of people-centred approaches. The Liberian NTD programme ‘Integrated Case Management Strategy’, focuses on DMDI for Buruli Ulcer, lymphoedema, hydrocele, leprosy and Yaws, and is designed to establish a person-centred approach to NTD management. Within this thesis, I apply narrative, intersectional and syndemic theory to empirical explorations with the aim of supporting the development of equitable and effective people-centred health systems responses to NTDs in Liberia. I align to capability approaches to disability, by situating health conditions within the broader economic, physical and social environment within which they are located. By discussing necessary health systems responses in relation to chronic disease, morbidity and disability as a result of preventable communicable infection, my analysis suggests that application of syndemic theory to other chronic disease conditions could be beneficial in mainstreaming disability within health systems reform. I use a qualitative case study approach, that draws on key informant interviews and critical reflections of implementation experience, to explore how changes in health sector governance (NTD policy and programme reform) can support systems change to enable the development of integrated people-centred services. My findings suggest that DMDI can serve as a bridge between the conflicting priorities of NTD programmes conceptualised around disease control, and integrated people- centred health systems focused on holistic care provision. Using an illness narrative approach, I then interrogate individual experiences of suffering linked to NTD-related morbidity. Narrative and intersectional analysis 2 enables me to consider how individual’s unique positions of power and privilege shape their illness experience and are a powerful tool in documenting experience of affected persons. NTDs create a profound disruption to the lives of people affected, frequently leading to periods of social isolation and mental distress, and require approaches that are transformative and contribute toward redressing existing power hierarchies. The creation of a ‘meta-narrative’ within this thesis allows commonalities in experiences to be documented to support the generation of chronic care packages that are guided by lived realities and to ensure that the needs and values of affected persons are at the centre of systems design. Finally, through the application of syndemic theory together with the concepts of structural violence and intersectionality, I draw together analysis at different societal levels to consider how the post-conflict context in Liberia has created a risk environment that shapes negative health outcomes in relation to NTDs and mental distress. Social and structural inequities as a result of conflict and fragility become embodied in varying ways to shape health and disability in Liberia. 3 Declaration I, Laura Charlotte Dean, declare that the work in this thesis is my own under the supervision of Sally Theobald and Rachel Tolhurst. At no previous time was this work submitted for a degree or qualification. Where information has been derived from other sources, or where co-authors have inputted to published papers, this has been indicated in the thesis. Laura Charlotte Dean 4 Table of Contents Abstract ......................................................................................................................... 2 Declaration .................................................................................................................... 4 List of Figures ............................................................................................................... 10 List of Tables ................................................................................................................ 10 List of Boxes ................................................................................................................. 10 List of Acronyms ........................................................................................................... 11 Acknowledgements ...................................................................................................... 13 Chapter 1: Introduction ................................................................................................ 16 1.1 Chapter Overview .................................................................................................. 16 1.2 Background to the Study........................................................................................ 17 1.2.1 Neglected Tropical Diseases .......................................................................... 17 1.2.2 People Centred Health Systems and Chronic Care Delivery .......................... 22 1.2.3 Health Equity, Gender and Intersectionality.................................................. 25 1.3 Rationale for the Study .......................................................................................... 29 1.4 Thesis Aims and Objectives .................................................................................... 31 1.5 Thesis Structure ..................................................................................................... 34 Chapter 2: Background to Liberia .................................................................................. 36 2.1 The Pathway to Conflict ......................................................................................... 36 2.2 Women and Peace ................................................................................................. 37 2.3 The Road to Recovery ............................................................................................ 38 2.4 The Journey Ahead................................................................................................. 41 Chapter 3: Literature Review ........................................................................................ 43 3.1 Chapter Overview .................................................................................................. 43 3.2 Health, Disease, Illness and Sickness ..................................................................... 45 3.2.1 Historical Perspectives of Disease and Illness: the dichotomy between the medical and the social, towards a more holistic paradigm? ......................................... 46 3.2.2 Constructs of subjective experience of illness through the use of narrative 47 3.3 Health and the Household ..................................................................................... 48 3.4 Disability and Disease in the Global Context ......................................................... 50 3.4.1 Defining Disability .......................................................................................... 51 3.4.2 Disability and Disease: What are the links? ................................................... 54 3.5 Disability and Development ................................................................................... 57 3.5.1 The United Nations Convention on the Rights of Persons with Disabilities .. 58 5 3.5.2 Approaches to Inclusion ................................................................................. 58 3.6 Intersectionality, Illness Experience and NTDs ...................................................... 59 3.6.1 Poverty, NTDs and Disability .......................................................................... 62 3.6.2 Gender, NTDs, Violence and Disability .......................................................... 64 3.6.3 Stigma, NTDs and Disability ........................................................................... 69 3.6.4 Conflict, Fragility, NTDs and Disability ........................................................... 71 3.6.5 NTDs and Mental Health ................................................................................ 72 3.6.6 NTDs and the Household ..............................................................................
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