The Management of Emotions in Caring for the Dying. An Ethnographic Study in Addis Ababa

349 Pages·2015·4.22 MB·English

‘Not Wanting to Upset’: The Management of Emotions
in Caring for the Dying.
An Ethnographic Study in Addis Ababa, Ethiopia.
by

Nicola Ayers
Thesis
Submitted for the degree of Doctor of Philosophy

Faculty of Health and Medical Sciences
School of Health Sciences
University of Surrey
September 2014
© Nicola Ayers 2014
Statement of Originality
This thesis and the work to which it refers are the results of my own efforts. Any ideas,
data, images or text resulting from the work of others (whether published or unpublished)
are fully identified as such within the work and attributed to their originator in the
bibliography or in the reference/bibliography or in footnotes. This thesis has not yet been
submitted in whole or in part for any other academic degree or professional qualification.

This thesis is copyright and may not be reproduced in part or in full
without the express permission of the author or of the University

© Nicola Ayers 2014
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Abstract
‘Not Wanting to Upset’: The Management of Emotions in Caring for the Dying.
An Ethnographic Study in Addis Ababa, Ethiopia.

Ethiopia, one of the poorest countries in the developing world, has limited resources for
those with advanced cancer requiring end of life care. This thesis explores the care of the
dying situation in Addis Ababa, as families access palliative care services. A critical
review examined palliative care set-up in sub-Saharan Africa and the Middle East and
explored models of care used and the multiple factors affecting palliative care delivery.
The review revealed a dearth of knowledge about care of the dying in Addis Ababa. A
further review provided insight into cultural aspects of good death. A focused
ethnography, carried out over a 6-month period at a hospice facility, involved participant
observation, interviews and home visits with staff, patients and family. Following thematic
analysis a number of significant themes were revealed. The importance of emotional
support by family and hospice staff was found to be the essence of care provision. The
awareness of a terminal diagnosis is often kept from the ill person so as ‘not to upset’,
thus protecting them emotionally from distress. Various communication strategies were
used by staff to create openness, though ultimately they deferred to the dying person’s
family; also family and hospice staff talked ambiguously about dying. Emotional care was
expressed by family members ‘stopping everything’ to care for their dying relative.
Through physical care, the dying person’s emotional equilibrium and comfort were
maintained. Hospice staff provided a ‘family-style service’. This study offers unique
understanding into non-disclosure of terminal diagnosis and how the family emotionally
protects the dying person. It gives valuable insight into how families and the emerging
Ethiopian palliative care service together provide care for the dying. The study has
implications for international relief workers and professional carers. This study points to
further research into care of the dying in rural communities in Ethiopia.

Key words: Ethiopia, Truth-telling, Palliative care, Emotional labour, Non-disclosure

© Nicola Ayers: 2014 University of Surrey
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Acknowledgements
Many thanks go to the patients, family members and hospice staff who were prepared to
tell their story; I am so grateful for the way you allowed me to share your experiences.
Dr Vasso Vydelingum and Dr Anne Arber have been my supervisors throughout this
journey and have been such a great support and help. I am extremely grateful for your
guidance, advice and wisdom. You are stars!
Thanks also go to my ‘critical friend’ Mary Raleigh, who has taught me how to ‘perch and
focus’ and has been a support throughout this study. Oak, you have also been a great
support and encouragement to keep on going.
My family, Dad, Mum, Paul, Jes and children, Rob, Anna and children, thank you for
hanging in there with me during this process, and for the way you have put up with me
being away for so long.
Dr John Peet has once again been an important person in this project, from reading first
drafts, to seeing the big picture - thank you.
To Phil and Monika, Sam and Amy, who have cheered me on through the whole process.
Thank you for always being there. Thanks also go to Rebecca for your love, care and
support. To my ‘other family’ in Guildford, who have supported me in countless ways; I
love you.
Rose, you have been truly amazing through the whole of this project, thank you for seeing
the vision of it and ‘stopping everything’ to be such a support.
Finally, thanks to my Ethiopian friends in Yemen, where this story starts, who I miss and
have taught me more than I can say.

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Table of Contents
Statement of Originality ......................................................................................... i
Abstract ..................................................................................................................ii
Acknowledgements ............................................................................................... iii
Table of Contents .................................................................................................. iv
List of Figures........................................................................................................ xi
List of Acronyms .................................................................................................. xii
Chapter 1 Background and Context .................................................................... 14
1.1. Background to the Study .......................................................................................... 14
1.1.1. Focus of the Study .............................................................................................. 16
1.2. Personal Interest in the Study ................................................................................. 17
1.3. A Guide to the Rest of the Thesis ........................................................................... 19
1.4. An Overview of the Country ..................................................................................... 23
1.4.1. Geography ............................................................................................................. 23
1.4.2. History .................................................................................................................... 24
1.4.3. The Current Political Situation ......................................................................... 25
1.4.4. Living in Ethiopia ................................................................................................. 26
1.4.4.1. Languages in Ethiopia ............................................................................... 27
1.4.4.2. Family Life ..................................................................................................... 28
1.4.4.3. Community Life ............................................................................................ 29
1.4.4.4. Religion and Spirituality ............................................................................ 29
1.4.5. Health Structure in Ethiopia ............................................................................. 31
1.4.5.1. Public Health Sector ................................................................................... 31
1.4.5.2. Private Health Sector .................................................................................. 32
1.4.5.3. Traditional Medicine ................................................................................... 32
1.4.6. Problems surrounding Health in Ethiopia .................................................... 33
1.4.6.1. Poverty and War .......................................................................................... 33
1.4.6.2. Maternal Health ............................................................................................ 33
1.4.6.3. Infectious Diseases ..................................................................................... 34
1.4.6.4. Gender Roles ................................................................................................ 35
1.4.6.5. Health and Religion ..................................................................................... 35
1.5. Living and Dying with Cancer in Ethiopia ............................................................ 35
1.6. Death and Dying in Ethiopia ..................................................................................... 36
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1.6.1. End of Life Care in Ethiopia ................................................................................... 36
Chapter 2 A Literature Review of Palliative Care in Ethiopia, surrounding
African countries and the Middle Eastern Region and an Exploration of Good
Death .................................................................................................................... 38
2.1. Critical Review ............................................................................................................ 40
2.1.1. Search Strategy ................................................................................................... 41
2.1.1.1. Inclusion/Exclusion Criteria ..................................................................... 45
2.1.1.2. Appraising the Evidence ........................................................................... 45
2.1.1.3. Critiquing Strategy ...................................................................................... 47
2.1.1.4. Synthesis of Themes .................................................................................. 47
2.1.1.5. Defining Care of the Dying ........................................................................ 47
2.1.2. Findings of the Review ...................................................................................... 50
2.1.2.1. Models of Care ............................................................................................. 50
2.1.2.1.1. The Impact of Charismatic Leadership ............................................. 53
2.1.2.1.2. The Lack of Government Finance ...................................................... 56
2.1.2.1.3. The Underlying Historical Disease Burden of HIV/AIDS .............. 57
2.1.2.1.4. The Availability of Opioids in the sub-Saharan African and
Middle Eastern Region ............................................................................................... 58
2.1.2.1.5. The Lack of Integrated Palliative Care Education .......................... 62
2.1.2.2. Factors Affecting Palliative Care ............................................................. 66
2.1.2.2.1. The Priority of Advocacy in Palliative Care ..................................... 66
2.1.2.2.2. The Effect of Poverty and War on Palliative Care .......................... 68
2.1.2.2.3. Cultural Implications to Providing Palliative Care ......................... 69
2.1.2.2.4. The Complexity of Providing Integrated Palliative Care .............. 72
2.1.3. Summary of the Critical Review ...................................................................... 73
2.1.4. Gaps in the Literature ......................................................................................... 74
2.1.4.1. Gaps in Knowledge and Understanding ............................................... 74
2.1.4.2. Gaps in Methodology ................................................................................. 74
2.1.4.3. Gaps in Theory or Theoretical Understanding .................................... 75
2.2. Good Death ................................................................................................................... 76
2.2.1. Introduction of Good Death .............................................................................. 76
2.2.1.1. Changing Historical Influences ............................................................... 76
2.2.1.2. The Impact of Palliative Care in the West on a Good Death ............ 80
2.2.1.3. Uncontrolled Death ..................................................................................... 82
2.2.2. Cultural Variations of a Good Death .............................................................. 85
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2.2.2.1. A Good Death in the West ......................................................................... 86
2.2.2.2. A Good Death in Africa and the Middle East ........................................ 86
2.2.2.3. A Good Death in the Far East ................................................................... 88
2.2.3. Cross- Cultural Factors of a Good Death ...................................................... 89
2.2.3.1. Dying Trajectory .......................................................................................... 89
2.2.3.2. Role of Family ............................................................................................... 90
2.2.3.3. Pain Relief ..................................................................................................... 93
2.2.3.4. Symptom Control ........................................................................................ 94
2.2.3.5. Emotional Care ............................................................................................. 95
2.2.3.6. Spiritual Care ................................................................................................ 97
2.2.4. Summary of the Good Death ............................................................................ 98
2.3. Conclusion .................................................................................................................... 98
2.4. Research Questions ................................................................................................. 100
2.4.1. Research Aim .............................................................................................................. 100
2.4.2. Objectives .................................................................................................................... 101
2.4.3. Research Questions .................................................................................................. 101
Chapter 3 Methodology and Methods .............................................................. 103
3.1. Methodology ............................................................................................................... 103
3.1.1. Ethnography as a Methodology .................................................................... 106
3.1.1.1. History .......................................................................................................... 106
3.1.1.2. The term ‘Ethnography’ ........................................................................... 107
3.1.2. Types of Ethnography ...................................................................................... 108
3.1.2.1. Conventional Ethnography ..................................................................... 108
3.1.2.2. Contemporary Ethnography ................................................................... 109
3.1.2.3. Critical Ethnography ................................................................................. 110
3.1.2.4. Feminist Ethnography .............................................................................. 111
3.1.2.5. Postmodern Ethnography ....................................................................... 112
3.1.2.6. Focused Ethnography .............................................................................. 112
3.1.3. The Rationale for Focused Ethnography .................................................... 113
3.1.4. Critique of Ethnography .................................................................................. 116
3.1.5. Ethnographic Methods ..................................................................................... 117
3.1.5.1. Participant Observation ........................................................................... 117
3.1.5.2. Field Notes and Research Diary ............................................................ 118
3.1.5.3. Ethnographic Interviewing ...................................................................... 119
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3.1.5.4. Natural Conversations ............................................................................. 121
3.1.6. Ethical Considerations ..................................................................................... 121
3.1.6.1. Non–maleficence and Beneficence ...................................................... 122
3.1.6.2. Autonomy/Self Determination ................................................................ 124
3.1.6.3. Justice .......................................................................................................... 124
3.1.7. Summary of Methodology ............................................................................... 125
3.2. Research Methods .................................................................................................... 126
3.2.1. Preparing to ‘Enter the Field’ ......................................................................... 126
3.2.2. Preparations for Scoping Visit ....................................................................... 126
3.2.2.1. Selecting a Setting .................................................................................... 126
3.2.2.2. Preparations to Gain Access .................................................................. 127
3.2.2.3. Personal Safety .......................................................................................... 128
3.2.2.4. Visas ............................................................................................................. 128
3.2.3. Scoping Visit....................................................................................................... 128
3.2.4. Entering the Field- Part One ........................................................................... 131
3.2.4.1 Multiple Identities as a Researcher ...................................................... 131
3.2.5. Fieldwork-Part One: Research Sites and Context .................................... 133
3.2.5.1. Familarisation ............................................................................................. 135
3.2.5.2. Experiencing the Hospice ....................................................................... 136
3.2.5.3. Admission Criteria for the Hospice ...................................................... 139
3.2.5.4. Sampling ...................................................................................................... 140
3.2.5.5. Creating Rapport ....................................................................................... 141
3.2.5.6. Over Rapport .............................................................................................. 142
3.2.5.7. Dress ............................................................................................................. 143
3.2.6. Participant Observation ................................................................................... 143
3.2.6.1. Adopting a Role ......................................................................................... 143
3.2.6.2. Social Situations ........................................................................................ 144
3.2.7. Field Notes .......................................................................................................... 147
3.2.8. Fieldwork - Part Two ......................................................................................... 149
3.2.8.1. Home Visits ................................................................................................. 149
3.2.8.2. Ethnographic Interviews.......................................................................... 151
3.2.8.3. Translation and Transcription of Interviews ...................................... 154
3.2.8.4. Participant Observation at the Hospice............................................... 155
3.2.8.5. Surviving in the Field................................................................................ 155
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3.2.8.6. Emotions in the Field................................................................................ 156
3.2.9. Data Analysis ...................................................................................................... 157
3.2.9.1. Matrix Formation ....................................................................................... 158
3.2.9.2. Thematic Analysis ..................................................................................... 159
3.2.9.2.1. Familiarisation ....................................................................................... 160
3.2.9.2.2. Generating Initial Codes ..................................................................... 161
3.2.9.2.3. Searching for Themes ......................................................................... 163
3.2.9.2.4. Reviewing Themes ............................................................................... 163
3.2.9.2.5. Defining and Redefining Themes ..................................................... 164
3.2.10. Data Verification ............................................................................................ 164
3.2.10.1. Reflexivity .................................................................................................... 165
3.2.10.1.1. Reflexivity as Recognition of Self .................................................. 166
3.2.10.1.2. Reflexivity as Recognition of Other ............................................... 166
3.2.10.1.3. Reflexivity as Truth ............................................................................ 167
3.2.10.1.4. Reflexivity as Transcendence ......................................................... 167
3.2.10.2. Credibility .................................................................................................... 168
3.2.10.3. Fittingness ................................................................................................... 169
3.2.10.4. Auditability .................................................................................................. 169
3.2.11. Summary of Research Methods ................................................................ 170
3.3. Conclusion .................................................................................................................. 170
Chapter 4 Care of the Dying in a Hospice Setting in Addis Ababa ................. 172
4.1. ‘Not Wanting to Upset’ ............................................................................................. 173
4.1.1. Not Wanting to Upset Loved Ones ............................................................... 174
4.1.1.1. ‘It is a small problem and it can be sorted’ ......................................... 174
4.1.1.2. ‘We want to keep Saga happy’ ............................................................... 175
4.1.1.3. ‘The doctor said I had a lump’ ................................................................ 176
4.1.1.4. ‘I want to know if my mother is at the end’ ......................................... 177
4.1.1.5. ‘If you cry it will cause side effects’ ..................................................... 179
4.1.2. How Hospice Staff Avoid Upset .................................................................... 180
4.1.2.1. ‘If you go and see my mother we can then talk outside’ ................ 181
4.1.2.2. ‘How do you feel about that?’ ................................................................ 183
4.1.2.3. ‘What I do is, I tell patients to follow, to follow’ ................................. 184
4.1.3. Not Wanting to Upset the Family .................................................................. 186
4.1.3.1. ‘I didn’t want to upset the children’ ...................................................... 186
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4.1.3.2. ‘Then the pain increased… then she told them’ ............................... 187
4.1.3.3. ‘Mum is sick’ ............................................................................................... 188
4.2. ‘Sick...Very Sick’ ........................................................................................................ 190
4.2.1. ‘Wax and Gold’ as a Way of Life .................................................................... 190
4.2.2. She’s Sick...Very Sick ....................................................................................... 191
4.2.2.1. ‘She’s Sick’ .................................................................................................. 192
4.2.2.2. ‘Sick...Very Sick...Seriously Sick’ .......................................................... 193
4.2.3. Community Working Together ....................................................................... 196
4.2.4. Encouraging Words .......................................................................................... 198
4.2.4.1. Blessings as Encouraging Words ........................................................ 198
4.2.4.2. Prayer as Encouraging Words ............................................................... 200
4.2.4.3. Encouraging Words of Accompaniment ............................................. 201
4.2.5. ‘What They Say’: ‘Good Death’ Sayings ...................................................... 202
4.3. A Stopping of Everything ........................................................................................ 207
4.3.1. ‘It Affects my Family…my Marriage’ ............................................................ 208
4.3.2. ‘I Do Everything’ ................................................................................................ 211
4.3.3. Providing Money for the ‘Best Care’ ............................................................ 213
4.3.3.1. ‘People Think Outside Is Better’ ............................................................ 214
4.3.3.2. ‘Now There Is No Money Left’ ................................................................ 216
4.3.4. ‘I Stopped Work’ ................................................................................................ 218
4.4. Care is all about Comfort ........................................................................................ 221
4.4.1. The First Thing is to Make Everything Clean ............................................. 222
4.4.1.1. ‘May God give me health…so that she won’t feel any sadness’ .. 223
4.4.1.2. ‘The first thing…is to make everything clean and then the
medicine’.. ....................................................................................................................... 225
4.4.1.3. ‘We have a real problem with water’ .................................................... 226
4.4.2. Handling Body Fluids and Smell ................................................................... 228
4.4.2.1. Body Fluids Associated with Cervical Cancer .................................. 228
4.4.2.2. Managing Body Fluids in Public ............................................................ 231
4.4.2.3. Managing Body Fluids in the Home ..................................................... 231
4.4.2.4. ‘The smell was so offensive’ .................................................................. 234
4.4.3. ‘I Have to Cook to Please Him’ ....................................................................... 236
4.4.3.1. ‘I made porridge and after a while she was happy’. ......................... 236
4.4.3.2. ‘I have to be there as my Mum prefers my cooking’. ....................... 238
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