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1 Strengthening Community Linkages to Ebola Virus Disease (EVD ANTHROPOLOGICAL RESEARCH ON EVD IN UGANDA Strengthening Community Linkages to Ebola Virus Disease (EVD) Outbreak Preparedness in Uganda Report on anthropological research on the socio-cultural context of EVD in the most-at-risk districts in Uganda Submitted by: David Kaawa Mafigiri, PhD, MPH Megan Schmidt-Sane, MPH Contact address: Department of Social Work and Social Administration Makerere University, School of Social Sciences P.O Box 7062 Kampala, Uganda Phone: +256 793371781 /773371781 Email: [email protected] Skype: mafigiridk Reporting Date: 17th June 2019 Version: 3.0 1 ANTHROPOLOGICAL RESEARCH ON EVD IN UGANDA Table of Contents Acknowledgements ............................................................................................................. iii Executive Summary ............................................................................................................. iv List of Abbreviations .......................................................................................................... xiv List of Tables and Figures .................................................................................................. xvi Definitions .........................................................................................................................xvii Part One: Background to the Study ...................................................................................... 1 1.1. Introduction ........................................................................................................................... 1 1.2. Ebola: The Current Epidemic in DRC ...................................................................................... 3 1.4. Literature Review .................................................................................................................. 8 1.4.1. Ebola: A Brief Virologic Overview ...................................................................................................8 1.4.2. Anthropology of Infectious Disease .............................................................................................. 10 1.4.3. Ebola: Historical, Social, and Cultural Context ............................................................................... 13 Part Two: Problem Statement, Objectives, and Frameworks ............................................. 19 2.1. Purpose of the Research and Theoretical Framing ............................................................... 19 2.2. Research Objectives ......................................................................................................... - 23 - 2.3. Research Questions and Variables ................................................................................... - 23 - 2.4. Theoretical Frameworks .................................................................................................. - 25 - 2.4.1. The Ecological Model and the Health-Belief Model ...................................................................- 25 - 2.4.2. Structural Violence ..................................................................................................................- 29 - Part Three: Methodology ............................................................................................... - 32 - 3.1. Introduction and Study design ......................................................................................... - 32 - 3.2. Study Setting.................................................................................................................... - 32 - 3.3. Sample and Recruitment ................................................................................................. - 33 - 3.4. Data Collection ................................................................................................................ - 36 - 3.4.1. Document Review ....................................................................................................................- 36 - 3.4.2. Focus Group Discussions (FGDs, II.a.) .......................................................................................- 37 - 3.4.3. Key informant interviews (KIIs, II.b.) .........................................................................................- 37 - 3.4.4. Participant Observation ...........................................................................................................- 38 - 3.5. Data Analysis ................................................................................................................... - 38 - 3.6. Training of Research Assistants ....................................................................................... - 40 - 3.7. Ethical Considerations ..................................................................................................... - 40 - 3.8. Risks and Benefits ............................................................................................................ - 41 - 3.9. Data Management ........................................................................................................... - 41 - 3.9.1. Data Storage and Management ................................................................................................- 41 - i ANTHROPOLOGICAL RESEARCH ON EVD IN UGANDA 3.9.2. Data Format and Future Storage ..............................................................................................- 42 - Part Four: Findings of the Study ..................................................................................... - 43 - 4.1. Findings Overview ........................................................................................................... - 43 - 4.2. Policy Review ................................................................................................................... - 44 - 4.3. Livelihoods & Health ........................................................................................................ - 46 - 4.4. Religious and Traditional Beliefs ...................................................................................... - 51 - 4.4.1. Religious Beliefs and Ebola .......................................................................................................- 51 - 4.4.2. Traditional Beliefs and Ebola ....................................................................................................- 53 - 4.5. Burial Practices and Funerary Rituals ............................................................................... - 57 - 4.6. Caretaking Practices and Gender ..................................................................................... - 61 - 4.7. Health Beliefs & Health-Seeking Behavior ....................................................................... - 64 - 4.8. Trust between the Community and Officials.................................................................... - 68 - 4.9. Social, Political, and Economic Context ............................................................................ - 73 - 5.1. Introduction ..................................................................................................................... - 78 - 5.2. A Cultural Context of Ebola in High-Risk Districts: An Ecological View ............................. - 78 - 5.3. Social, Political, and Economic Context of Ebola in High-Risk Districts: Structural Violence ... - 79 - Part Six: Conclusions and Recommendations ................................................................. - 80 - 6.1. Introduction ..................................................................................................................... - 80 - 6.2. Policy and Program Recommendations ........................................................................... - 80 - 6.3. Dissemination of research ............................................................................................... - 83 - References ...................................................................................................................... - 84 - Appendices ..................................................................................................................... - 93 - 1. Ethical Approvals ................................................................................................................ - 93 - 2. Map of High-Risk Districts in Uganda .................................................................................. - 98 - 3. Focus Group Discussion Guide ............................................................................................ - 99 - 4. Key Informant Interview Guide......................................................................................... - 103 - 5. Participant Observation Guide.......................................................................................... - 108 - 6. Research Assistants Training Agenda and Topics .............................................................. - 109 - 7. Extract from Code book .................................................................................................... - 112 - ii ANTHROPOLOGICAL RESEARCH ON EVD IN UGANDA Acknowledgements We are grateful for UNICEF's support of this study. We are also grateful to the Ugandan Ministry of Health and the National Task Force on Disease Outbreaks and Response members, who supported this work. We acknowledge the study team, including all research assistants who worked under hard circumstances to collect data needed for the study. We appreciate each district’s leadership for their collaboration and inputs provided. We also sincerely
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