The experience of living with bowel cancer for Māori in Taranaki

276 Pages·2017·2.35 MB·English

The experience of living with bowel cancer
for Māori in Taranaki

TOM RUAKERE

A thesis submitted in partial fulfilment of the requirements for the
degree of Doctor of Health Science (DHSc)

Auckland University of Technology

November 2016

School of Public Health and Psychosocial Studies
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ABSTRACT
The title of this study is: The experience of living with bowel cancer for Māori in
Taranaki. Research methods for this study have been adapted from research
approaches collectively known as Kaupapa Māori. The study is also informed by
Gadamerian hermeneutic interpretive methodology which unpacks the nature of
how we understand and interpret. However, the lens through which
understanding is expressed, is from a Māori worldview.
Ten Māori patients, diagnosed with bowel cancer were interviewed and their
narratives analysed using Gadamerian hermeneutic methodology. The concepts
of whakapapa, mauri and tapu were fundamental to the analysis process .
Whakapapa in the context of this study examined the stories substance or origin
about participant experiences and initial signs that not all was right with their
health. The concept of amuri shed light on ways of experiencing bowel cancer
that came to reveal how particip asntot ries fell into one of three perstipvecs:
mauri moe; mauri oho a mndauri ora.S ignsa rchetypaol f mauri moew ere eviden t
where participant behaviours remaingerodu nded in responses framed within the

notion of mamaaend its negative elements of neglect, hurt, pain, a,n agnudi sh
sorrow. Mauri oho revealed distinct changes in behavioural patterns that signified
an upsurge in motivation by participants who were committed to overcome their
dilemma and be well again. M auri ora signified actions that revealed successful
outcomes when participants became highly motivated, felt good about their health
and were committed to keeping good health. The concept of tapu was utilised to
examine the un derlying principal issues that determined participant existence in
the present.
The findings show ed that participants had no understanding of bowel cancer
before they were diagnosed. Some participants experienced shame and
embarrassment at the prospect of having to live the rest of their lives with a stoma.
Recognition of tapu through the proper exercise of mana was an important factor
in participant recovery . Violation of tapu through the wrongful e xercise of mana
also manifested as having negative effects on participant recovery. Based on the
findings from this study the following recommenda tions for further research are
proposed: a Kaupapa Māori action research study in conjunction with introducing
the inflatable colon to the community working with a grou p of stakeholders to
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educate Māori about bowel cancer and; a Kaupapa Māori action research study
with a group of stakeholders to devise a treatment pathway that integrates the
concepts of whakapapa, mauri and tapu when assessing Māori who present to
healthcare providers with a suspected prognosis of bowel cancer.
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TABLE OF CONTENTS
Abstract ......................................................................................................................... i
List of Figures .............................................................................................................. ix
List of Tables ................................................................................................................ x
Attestation of Authorship .............................................................................................. xi
Acknowledgements ...................................................................................................... xii
Dedication................................................................................................................... xiii
Prologue ..................................................................................................................... xiv
MY STORY ................................................................................................................. xv
Timeless wisdom for the ages – Te Raukura ........................................................... xv
Suppression of historicity- what we were not taught at school ............................... xviii
The legacy of inspirational leaders .......................................................................... xix
A legacy with a difference ....................................................................................... xix
Growing up on the land ........................................................................................... xx
THE MOUNTAIN SAW IT ALL ................................................................................ xx
An awakening – the revelations of historicity .......................................................... xxii
Being disconnected - an outcome fabricated through acculturation ........................ xxii
Loss of land, loss of tapu, loss of mana, loss of health .......................................... xxiv
European solutions to Māori problems .................................................................. xxiv
Locating self as researcher .................................................................................... xxv
Locating self in relation to others ......................................................................... xxviii
CHAPTER ONE: CONTEXT OF THE STUDY .............................................................. 1
1.1 Introduction ......................................................................................................... 1
1.2 The Approach of the Study .................................................................................. 1
Who am I? (The realm of whakapapa) ................................................................... 1
How am I? (The realm of mauri) ............................................................................ 2
Why am I? (The realm of tapu) .............................................................................. 2
What is Cancer? .................................................................................................... 2
Understanding Bowel Cancer ................................................................................ 3
Why a Study on Bowel Cancer ?............................................................................ 4
1.3 Background ......................................................................................................... 6
Researching Māori Health – The Reason Why ...................................................... 6
Māori Population – Taranaki .................................................................................. 9
Demographics of Taranaki Iwi ............................................................................... 9
Māori Health Status in Taranaki ............................................................................. 9
Bowel Cancer Management for Māori in Taranaki ............................................... 10
1.4 Summary ........................................................................................................... 10
1.5 Overview of the thesis ....................................................................................... 11
CHAPTER TWO: THEORETICAL FOUNDATIONS OF TE AO MĀORI ...................... 13
2.1 Introduction ....................................................................................................... 13
2.2 Kaupapa Māori Theory ...................................................................................... 13
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Māori Cosmology ................................................................................................. 13
2.3 Notions of Ontology, Epistemology, Axiology .................................................... 16
2.4 Māori Narratives ................................................................................................ 18
2.5 Māori Consciousness – The Māori Mind ............................................................ 20
Te Reo Māori ....................................................................................................... 21
Whakapapa ......................................................................................................... 21
Wairua ................................................................................................................. 22
Tapu .................................................................................................................... 23
Noa ...................................................................................................................... 26
Mana ................................................................................................................... 27
Mauri ................................................................................................................... 29
Whenua ............................................................................................................... 30
2.6 Māori Social Structures ..................................................................................... 31
Rangatira ............................................................................................................. 31
Tohunga .............................................................................................................. 31
Kaumātua ............................................................................................................ 32
Whānau, Hapū, Iwi .............................................................................................. 32
Waka ................................................................................................................... 33
Nga Tikanga Māori .............................................................................................. 33
Marae and Papakainga ........................................................................................ 34
Manaaki and Kai .................................................................................................. 34
Whānaungatanga and Hui ................................................................................... 34
2.7 Summary ........................................................................................................... 35
CHAPTER THREE: A REVIEW OF THE LITERATURE ............................................. 36
3.1 Introduction ....................................................................................................... 36
3.2 The Prevalence of Cancer Worldwide ............................................................... 37
3.3 Indigenous Populations ..................................................................................... 40
Defining Indigenous ............................................................................................. 40
Indigenous Peoples ............................................................................................. 40
Indigenous Peoples and Health Status ................................................................ 40
3.4 International Perspectives on Bowel Cancer - Journeys of Emotion and Despair
................................................................................................................................ 41
3.5 Bowel Cancer in Aotearoa/New Zealand - A National Dilemma ......................... 43
Māori, Cancer and the Quest for Meaning ........................................................... 44
3.6 Government Policy and Māori Health - Changing the Landscape for Māori ....... 46
He Korowai Oranga ............................................................................................. 47
3.7 Whānau Ora - Focusing on Outcomes That Make a Difference ......................... 48
3.8 Relevance of Other Studies ............................................................................... 49
Māori and Cultural Safety .................................................................................... 50
3.9 Cross Cultural Perspectives .............................................................................. 51
3.10 Summary ......................................................................................................... 53
CHAPTER FOUR: METHODOLOGY .......................................................................... 54
4.1 Introduction ....................................................................................................... 54
4.2 Gadamers Hermeneutics and Te Ao Māori........................................................ 54
Gadamerian Hermeneutics .................................................................................. 55
Hermeneutics - Assumptions ............................................................................... 57
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4.3 Kaupapa Māori Research Methodology ............................................................. 58
Kaupapa Māori Research Principles and Assumptions ........................................ 58
The Principles of Te Reo and Tikanga Māori ....................................................... 59
The Principle of Rangatiratanga........................................................................... 60
The Principle of Extended Family Structure ......................................................... 60
The Principle of Collective Philosophy ................................................................. 60
The Principle of Pono .......................................................................................... 61
The Principle of Tika ............................................................................................ 61
The Principle of Aroha ......................................................................................... 62
4.4 Māori Consciousness and the Concepts of Tapu and Noa ................................ 63
Whakanoa as a Derivative of Noa ........................................................................ 63
Whakanoa i te Hauora o te Tangata .................................................................... 65
4.5 Mauri - A Method to Determine Behavioural Patterns of Māori Experiences of
Bowel Cancer .......................................................................................................... 65
Tapu as Antecedent to Mauri ............................................................................... 65
Diminished Tapu as a State of Being of Mauri Moe. ............................................ 66
Enhanced Tapu as a State of Being of Mauri Oho ............................................... 66
Restored Tapu as a State of Being of Mauri Ora ................................................. 67
4.6 Summary ........................................................................................................... 67
CHAPTER FIVE: METHOD ........................................................................................ 69
5.1 Introduction ....................................................................................................... 69
5.2 A Kaupapa Māori Approach .............................................................................. 69
5.3 Engaging Participants ....................................................................................... 70
5.4 Ethical Considerations ....................................................................................... 71
Consultation with Iwi ............................................................................................ 71
Accessing Participants ......................................................................................... 71
Informing Participants .......................................................................................... 71
Protecting Participants ......................................................................................... 72
Privacy and Confidentiality ................................................................................... 72
Koha .................................................................................................................... 73
Provision for Counselling ..................................................................................... 73
5.5 Research Questions .......................................................................................... 74
5.6 Semi-structured Interviews ................................................................................ 74
The Fit Between Research Questions and Methodology ..................................... 74
5.7 Unpacking the Stories – Working with the Data ................................................. 75
Interpretive lens ................................................................................................... 75
Tapu is Dynamic .................................................................................................. 76
Mauri is Dynamic ................................................................................................. 77
Tapu as Antecedent to States of Mauri ................................................................ 78
5.8 Analysis ............................................................................................................. 78
5.9 Presentation of Data in the Thesis ..................................................................... 80
5.10 Trustworthiness ............................................................................................... 81
5.11 Summary ......................................................................................................... 83
CHAPTER SIX: DIMINISHED TAPU AS STATE OF BEING - OF MAURI MOE ......... 85
6.1 Introduction ....................................................................................................... 85
Mihi’s Story ............................................................................................................. 85
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Whakapapa of Mihi’s Story .................................................................................. 85
6.2 Mihi’s Story – The Search for Meaning .............................................................. 90
Manifestation of Anxiety - We Were Worried........................................................ 90
Manifestation of Withdrawal – Being Alienated .................................................... 92
Being Pono – We Didn’t Know ............................................................................. 94
Manifestation of Distress - He Suffered in Silence ............................................... 95
6.3 Summary ........................................................................................................... 97
Manu’s Story ........................................................................................................... 98
Whakapapa of Manu’s Story ................................................................................ 98
6.4 Manu’s Story – The Search for Meaning ......................................................... 107
Being in Denial .................................................................................................. 107
Being in Withdrawal ........................................................................................... 107
Being in Distress ................................................................................................ 108
Being Rejected .................................................................................................. 109
Being Both Nurse and Patient ............................................................................ 109
Being in Ignorance ............................................................................................. 110
The Road to Nowhere ........................................................................................ 110
The Road to Redemption - Turning to God ........................................................ 111
Reflecting the Past............................................................................................. 112
6.5 Summary ......................................................................................................... 113
6.6 Conclusion ...................................................................................................... 114
CHAPTER SEVEN: ENHANCED TAPU AS STATE OF BEING - OF MAURI OHO .. 115
7.1 Introduction ..................................................................................................... 115
Matanuku’s Story .................................................................................................. 115
The Whakapapa of Matanuku’s Story ................................................................ 115
7.2 Interpreting Matanuku’s Story – The Search for Meaning ................................ 119
Being Pono – Facing Reality .............................................................................. 119
A New Awakening – A Rebirth ........................................................................... 120
Being with a Stoma ............................................................................................ 121
7.3 Being with Whānau ......................................................................................... 122
7.4 Reflecting the Past .......................................................................................... 123
7.5 Summary ......................................................................................................... 123
Rihari’s Story ......................................................................................................... 124
The Whakapapa of Rihari’s Story ...................................................................... 124
7.6 Interpreting Rihari’s Story – The Search for Meaning ...................................... 129
Trust in the System ............................................................................................ 129
We Didn’t Know Any Better ................................................................................ 131
Being with Others .............................................................................................. 132
7.7 We Have a Lot to Live for ................................................................................ 133
7.8 Summary ......................................................................................................... 134
7.9 Conclusion ...................................................................................................... 134
CHAPTER EIGHT: RESTORED TAPU AS THE STATE OF BEING - OF MAURI ORA
................................................................................................................................. 136
8.1 Introduction ..................................................................................................... 136
Moana’s Story ....................................................................................................... 136
Whakapapa of Moana’s Story ............................................................................ 136
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8.2 Interpreting Moana’s Story – The Search for Meaning ..................................... 140
Accepting the Challenge .................................................................................... 140
8.3 Being with a Stoma – Overcoming Whakamā .................................................. 141
8.4 Whanaungatanga – The Essence of Collective Wellbeing ............................... 142
The Proper Exercise of Mana ............................................................................ 144
8.5 Being in Mauri Ora .......................................................................................... 145
We are Happy in Our lives ................................................................................. 145
8.6 Summary ......................................................................................................... 146
Roimata’s Story ..................................................................................................... 147
Whakapapa of Roimata’s Story.......................................................................... 147
8.7 Roimata’s Story – The Search for Meaning ..................................................... 149
I Had Never Heard of Bowel Cancer .................................................................. 149
Being in Fellowship - The Grace of Atua ............................................................ 150
8.8 The Proper Exercise of Mana .......................................................................... 151
8.9 Being in Mauri Ora - I’m loving my Work and loving my life ............................. 152
8.10 Summary ....................................................................................................... 153
Ripeka’s Story ....................................................................................................... 153
Whakapapa of Ripeka’s Story ............................................................................ 153
8.11 Interpreting Ripeka’s Story – The Search for Meaning .................................. 161
I Thought It Was Haemorrhoids ......................................................................... 161
8.12 Being with a stoma ........................................................................................ 161
8.13 The Intervention of Tohunga ......................................................................... 162
8.14 I Hated What was Happening to me .............................................................. 164
8.15 I was Close to Saying no to Surgery .............................................................. 164
8.16 Whanaungatanga – Being with Whānau ........................................................ 165
8.17 The Irony of Invasive Therapy ....................................................................... 166
8.18 Being in Mauri Ora ........................................................................................ 166
8.19 Summary ....................................................................................................... 167
8.20 Conclusion .................................................................................................... 167
CHAPTER NINE: DISCUSSION ............................................................................... 168
9.1 Introduction ..................................................................................................... 168
9.2 Whakapapa ..................................................................................................... 169
9.3 Mauri ............................................................................................................... 169
9.4 Whanaungatanga – Maintaining the Boundaries of Tapu ................................ 171
The Proper Exercise of Mana ............................................................................ 171
9.5 Violating the Boundaries of Tapu ..................................................................... 172
The Wrongful Exercise of Mana ......................................................................... 172
9.6 Alienation Through Ignorance.......................................................................... 174
9.7 Alienation Through Unconscious Bias ............................................................. 175
9.8 Being with a Stoma ......................................................................................... 177
9.9 Whanaungatanga – A Health-Giving Relationship ........................................... 178
9.10 Surviving with Bowel Cancer ......................................................................... 179
9.11 Implications for Ongoing Research ................................................................ 180
Proposed Study 1 .............................................................................................. 180
Proposed Study 2 .............................................................................................. 181
9.12 Limitations of the Study ................................................................................. 183
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9.13 Conclusion .................................................................................................... 184
List of References ..................................................................................................... 187
Appendices ............................................................................................................... 195
Appendix A: Glossary ............................................................................................ 195
Appendix B: Three Stories .................................................................................... 200
Appendix C: Signs and symptoms of bowel cancer ............................................... 227
Appendix D: Research Documents ........................................................................ 230
Appendix E: Bowel Cancer Advertisement ............................................................ 240
Appendix F: The Inflatable Colon – To See is to Believe ....................................... 242
Appendix G: Mapping the Boundaries of Tapu that Protect Life ............................ 244
Appendix H: Registration and Mortality Bowel Cancer Rates – Māori/Non-Māori .. 246
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LIST OF FIGURES
Figure 1: Te Raukura – the three-feathered emblem .................................................. xvi
Figure 2: Parihaka Pa in the early 19th century ......................................................... xvii
Figure 3: Te Whiti o Rongomai’s resting place .......................................................... xviii
Figure 4: The family farm 1955 ................................................................................. xxvi
Figure 5: Puniho Pā ................................................................................................. xxvii
Figure 6: Research design .......................................................................................... 69
Figure 7: Tapu is dynamic ........................................................................................... 76
Figure 8: The behavioural patterns linked to mauri ..................................................... 77
Figure 9: The dynamic movement of mauri ................................................................. 77
Figure 10: Tapu as antecedent to states of mauri ....................................................... 78
Figure 11: Analysis framework .................................................................................... 80