AN ETHNOGRAPHIC STUDY OF PALLIATIVE CARE IN A NIGERIAN HOSPITAL A thesis Submitted for the Degree of PhD At the University of Northampton 2019 DAVID A. AGOM © [David A. Agom] [PhD in Nursing]. This thesis is copyright material and no quotation from it may be published without proper acknowledgement. Page i Contents ACKNOWLEDGEMENT ........................................................................................................................ VII ACRONYMS............................................................................................................................................. VIII ABSTRACT ................................................................................................................................................. IX CHAPTER ONE .......................................................................................................................................... 1 INTRODUCTION AND BACKGROUND TO THE THESIS ............................................................ 1 1.0 IDENTIFICATION OF THE BROAD AREA OF INVESTIGATION ...................................... 1 1.1 PALLIATIVE CARE ........................................................................................................................... 4 1.1.1 WHAT IS PALLIATIVE CARE? ................................................................................................................................ 4 1.1.2 WHY PALLIATIVE CARE? .................................................................................................................................... 5 1.1.3 PALLIATIVE CARE IN NIGERIA .............................................................................................................................. 5 1.2 RESEARCH QUESTIONS ................................................................................................................ 7 1.3 CHOICE OF RESEARCH DESIGN ................................................................................................ 8 1.4 THESIS STRUCTURE ...................................................................................................................... 9 CHAPTER TWO ........................................................................................................................................ 10 PROVISION AND UTILISATION OF PALLIATIVE CARE IN AFRICA: A SCOPING REVIEW ...................................................................................................................................................... 10 2.0 INTRODUCTION .............................................................................................................................. 10 2.1 METHODOLOGY OF THE SCOPING REVIEW ....................................................................... 10 2.1.1 STEP ONE: IDENTIFYING THE RESEARCH QUESTION ................................................................................................ 11 2.1.2 STEP TWO: IDENTIFYING THE RELEVANT STUDIES................................................................................................... 11 2.1.3 STEP THREE: SELECTION OF STUDIES ................................................................................................................... 13 2.1.4 STEP FOUR: CHARTING THE DATA ...................................................................................................................... 13 2.1.5 STEP FIVE: COLLATING, SUMMARIZING, AND REPORTING RESULTS ............................................................................ 13 2.2 FINDINGS ........................................................................................................................................... 14 2.2.1 INDIVIDUAL-LEVEL FACTORS INFLUENCING PALLIATIVE CARE .................................................................. 15 2.2.1.1 Knowledge and attitude of the healthcare Providers about palliative care ...................................... 16 2.2.1.2 Patients’ and relatives’ factors impacting on palliative care ............................................................ 17 2.2.2 SYSTEM-LEVEL BARRIERS IMPACTING ON PALLIATIVE CARE ..................................................................... 20 2.2.2.1 Availability and accessibility of palliative care services..................................................................... 20 2.2.2.2 Symptoms prevalence, burden and control ....................................................................................... 22 2.2.2.3 Education and training for healthcare professional in palliative care .............................................. 22 2.2.2.4 Political factors impacting on palliative care .................................................................................... 23 2.2.3 RELATIONAL BARRIERS TO PALLIATIVE CARE ............................................................................................ 26 2.3 DISCUSSION AND SUMMARY OF FINDINGS....................................................................... 27 2.4 GAPS IN LITERATURE THAT INFORM THE RESEARCH FOCUS ON NIGERIA ...... 30 2.5 CONCLUSIONS ................................................................................................................................ 31 CHAPTER THREE ................................................................................................................................... 34 Page ii METHODOLOGY AND METHODS ..................................................................................................... 34 3.0 INTRODUCTION .............................................................................................................................. 34 3.1 PHILOSOPHICAL PERSPECTIVES OF THE RESEARCH .................................................. 35 3.2 THEORETICAL PERSPECTIVE OF THE STUDY: SYMBOLIC INTERACTIONISM ... 37 3.3 CHOICE OF METHODOLOGY ..................................................................................................... 41 3.3.1 ETHNOGRAPHY .............................................................................................................................................. 43 3.4.1 THE SETTING ................................................................................................................................................. 45 3.4.2 THE PARTICIPANTS (SAMPLE DESIGNATION AND SIZE) ............................................................................................ 47 3.5 METHODS OF DATA COLLECTION .......................................................................................... 49 3.5.1 PARTICIPANT OBSERVATION ............................................................................................................................. 49 3.5.1.1 Field notes ......................................................................................................................................... 55 3.5.2 ETHNOGRAPHIC INTERVIEW ............................................................................................................................. 56 3.5.2.1 Interview procedures ......................................................................................................................... 60 3.5.3 DOCUMENTARY EVIDENCE ............................................................................................................................... 62 3.6 GAINING ETHICAL APPROVAL (NEGOTIATING FOR ACCESS) ................................... 62 3.6.1 ETHICAL CONSIDERATIONS ............................................................................................................................... 63 3.6.2 POTENTIAL RISKS AND ETHICAL ISSUES SPECIFIC TO THE STUDY ................................................................................. 64 3.7 ETHNOGRAPHIC DATA ANALYSIS ......................................................................................... 66 3.8 EVALUATING ETHNOGRAPHIC RESEARCH ........................................................................ 72 3.9 REFLEXIVITY ................................................................................................................................... 76 3.9.1 RESEARCHER’S BACKGROUND AND EXPERIENCE .................................................................................................... 76 3.9.2 DURING DATA COLLECTION AND ANALYSIS........................................................................................................... 78 3.9.2.1 Researcher’s positionality: the insider-outsider perspectives ........................................................... 79 3.10 SUMMARY OF THE CHAPTER ................................................................................................. 82 CHAPTER FOUR ...................................................................................................................................... 84 THE ORGANISATION OF PALLIATIVE CARE IN THE STUDY SETTING .......................... 84 4.0 INTRODUCTION .............................................................................................................................. 84 4. 1 AN HISTORICAL ACCOUNT OF PALLIATIVE CARE IN THE STUDY SITE .............. 84 4.1.1 THE INCEPTION OF THE PALLIATIVE CARE UNIT IN THE STUDY SETTING ....................................................................... 84 4.1.2 THE PHYSICAL LAYOUT OF THE PALLIATIVE CARE UNIT ............................................................................................ 86 4. 2 ORGANISATION OF SERVICE PROVISION ........................................................................