Spirituality in men with advanced prostate cancer

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University of Southern Queensland

Faculty of Sciences

Centre for Rural and Remote Area Health

Spirituality in men with

advanced prostate cancer

“It’s a holistic thing … it’s a package”

A dissertation submitted by:

Laurence Lepherd BA, MEd (Hons)

For the award of Doctor of Philosophy

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Abstract

The aim of this doctoral research was to explore the nature of spirituality in men with

advanced prostate cancer, and to discover the role that spirituality might have in

these men as they face the challenges associated with living with their disease. The

concept of spirituality is widely discussed in literature but definitions of it can be

confusing. The term is often used synonymously with religion but such juxtaposition

can be misleading. This research sought to describe the concept of spirituality

through an analysis of literature and through an understanding of what spirituality

meant to men in specific circumstances. A qualitative approach using a methodology

that incorporated hermeneutic and dialectic principles, case study and narrative

method was used to explore the spirituality of nine men with advanced prostate

cancer who volunteered to participate and to tell the story of their cancer journey

with particular focus on their spirituality. In this study, advanced prostate cancer

referred to the condition existing when the cancer had become non-localised by

spreading beyond the prostate gland to other parts of the pelvic area, or had

metastasised to other parts of the body. The study found that spirituality for these

men was a “holistic thing” that involved physical, psychosocial and spiritual matters

that enabled them to transcend the everyday difficulties of their journey and obtain

greater comfort and peace of mind during what was for many of them a traumatic

time. The central theme in the men’s stories was that of Connectedness – to

themselves, to their partners, sometimes to a higher being and also to other people

such as their family and friends. It was also observed that their physical and spiritual

journeys progressed in parallel. The findings of this research will have considerable

benefit to healthcare practitioners who are frequently involved in caring for men in

this condition who have a need to discuss their spirituality as their life’s journey ebbs

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Certification of dissertation

I certify that the ideas, work, results, analyses, interpretations and conclusions

reported in this dissertation are entirely my own work, except where otherwise

acknowledged. I also certify that the work is original and has not been previously

submitted for any other award.

___________________________________ __________________

Signature of Candidate Date

Endorsement

___________________________________ ___________________

Signature of Supervisor/s Date

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Acknowledgements

This research could not have taken place without the generous involvement of nine special men. They were all enthusiastic about telling their stories in the hope that others would gain benefit. Unfortunately, two of the participants did not live to see the finished project. I sincerely trust that the conclusions reached in this research will achieve what they and the other men anticipated.

I have special gratitude for my supervisor, Professor Cath Rogers-Clark who has been a source of infinite wisdom, patience and encouragement. Her experience and expertise have been a source of inspiration for me. My long-time friend and colleague Dr Des Coates was always perceptive and incisive in his observations as an Associate Supervisor. His insight and encouragement are also appreciated.

During the course of my research I have had the pleasure of having frequent discussions with, and the support of, a number of colleagues. I especially thank Dr Susanne Pearce for her challenging and good humoured discussions, and Dr Jenny Moffatt for providing perspectives that I have found informative. I have appreciated the support of my colleagues in the Department of Nursing and Midwifery at USQ, especially those also undertaking the PhD journey. I thank colleagues in the Centre for Rural and Remote Area Health who have shown considerable interest in my work and always offered encouragement.

I gratefully acknowledge the help of my colleagues at Cancer Council Queensland – Megan, Sylvia, Brigid and Alex, the Prostate Cancer Foundation of Australia, particularly David and Daryl, the Toowoomba Prostate Cancer Support Group, and Pastoral Carers at the Toowoomba Hospital, especially Lyn, for their diverse assistance, interest and encouragement. I have also received support from many other friends and colleagues and I am very grateful for this.

I owe a debt of gratitude to Dr Denise Miner-Williams, whose work, acknowledged during this dissertation, was a catalyst for some of my thinking on spirituality. I also acknowledge with thanks the proofreading carried out by Ms Judy Brewer.

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We join spokes together in a wheel,

but it is the centre hole

that makes the wagon move.

We shape clay into a pot,

but it is the emptiness inside

that holds whatever we want.

We hammer wood for a house,

but it is the inner space

that makes it liveable.

We work with being,

but non-being is what we use.

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Page i

Table of Contents

CHAPTER 1 – INTRODUCTION ... 1

Background ... 3

Aim of the study ... 4

Research questions ... 5

The researcher ... 5

Research outline ... 7

CHAPTER 2 – LITERATURE REVIEW ... 11

About spirituality ...13

Spirit and spirituality ... 14

Multidimensional nature of spirituality ...20

Manifestation of spirituality through behaviour ...29

Outcomes of spirituality ...34

Transcendence – fundamental to spirituality ...36

Other considerations ... 41

Spiritual depth or intensity ...41

Measurement of spirituality ...43

Spiritual needs and distress ...43

About prostate cancer ...46

The disease and its prevalence ... 46

Medical issues ... 47

Advanced prostate cancer and treatments ... 49

Stress ... 51

Coping with stress ... 52

Spirituality, well-being, cancer and prostate cancer ...55

Spirituality and well-being ... 55

Spirituality and cancer ... 58

Spirituality and prostate cancer, and advanced prostate cancer . 61 Conclusion ...67

CHAPTER 3 – RESEARCH METHODOLOGY ... 68

Paradigm and methodology ...68

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Page ii

Qualitative paradigm – constructivist position ... 70

Research process ... 73

Phase 1 – The researcher ... 74

Phase 2 – Interpretive paradigms ... 75

Phase 3 – Strategies of inquiry ... 77

Phase 4 – Methods of collection and analysis ... 78

Phase 5 – Interpretation and evaluation ... 80

Conclusion ... 80

CHAPTER 4 – DESIGN AND METHOD ... 81

Participants ... 81

Selection ... 81

Recruitment assistance ... 82

Interviews ... 83

Unstructured, semi-structured or structured interviews? ... 84

Interviewing process ... 86

Interviewing men ... 88

Working with participants ... 90

Difficulties ... 90

Ethical considerations ... 91

Analysis ... 93

Narrative analysis ... 93

Thematic analysis ... 95

Research rigour and quality ... 97

Personal statement ... 99

Conclusion ... 100

CHAPTER 5 – MEN’S STORIES ... 102

Michael ... 102

Craig ... 109

Wayne ... 117

Colin ... 124

Ben ... 131

Jason ... 138

Stephen ... 147

Alan ... 158

Ken ... 166

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Page iii

CHAPTER 6 – THE JOURNEY ... 178

Two perspectives ... 178

The journey – medical, physical, psychological and social ... 182

Medical matters – climbing a mountain ... 183

Beginnings – “a hell of a shock” ... 183

Diagnosis – “a knock in the face” ... 183

Treatments – “that’s it?” ... 184

Physical matters – “look after your own body” ... 187

Age – “I feel robbed” ... 187

Sex – “I’m no longer a man!” ... 188

Keeping active – “dancing lifts me” ... 190

Food – “If it comes out of the ground, we eat it” ... 191

Psychological matters – “I have a good mindset” ... 192

Attitude – “it’s not going to get me!” ... 192

Stress – sometimes “the chips were down” ... 192

Emotional volatility – from “Beauty!” to “blubbering mess” .. 193

Suffering – “the pain … worries me” ... 195

Social matters – “they were a great help to me” ... 196

Support – “Wow, I’m not alone in this journey!” ... 196

Dissatisfaction – “my GP really let me down” ... 198

The journey – spiritual ... 199

Connectedness – “a problem shared” ... 200

Connectedness with self ... 201

Connectedness with a partner ... 205

Connectedness with a higher being ... 207

Connectedness with other(s) ... 210

Connectedness – being lifted ... 214

Process and journey ... 214

Values ... 218

Purpose and meaning ... 221

Peace of mind, fulfilment and alleviation of suffering ... 224

“It’s the holistic approach … it’s the whole package” ... 226

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Page iv

CHAPTER 7 – “THE WHOLE PACKAGE THAT HAS COME TOGETHER”

... 228

Introduction ... 228

Spiritual dimensions and outcomes – were they evident? ... 232

Spiritual – or psychosocial? ... 236

What is spiritual depth? ... 239

Transcendence – a “lift” ... 240

Does holistic spirituality help in coping with stress? ... 241

Holism and inductive reasoning ... 244

Conclusion ... 244

CHAPTER 8 – CONCLUSIONS AND RECOMMENDATIONS ... 245

Outcomes of this research ... 245

Significance, future research and recommendations ... 247

Conclusion ... 252

REFERENCES ... 253

APPENDICES ... 287

A Consent Form ... 287

B News release to Prostate Cancer News ... 289

C Second news release to Prostate Cancer News ... 291

D Letter to individuals ... 292

E Cancer Council Queensland Helpline ... 293

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Page v

List of Conceptual Maps

Conceptual Map 2.1 – Spirituality: synthesis of the literature ... 40

Conceptual Map 6.1 – Thematic analysis: the medical, physical, social and psychological journey ... 182

Conceptual Map 6.2 – Thematic analysis: the spiritual journey ... 200

Conceptual Map 7.1 – Thematic analysis: the “Holistic Package” ... 231

List of Figures Figure 3.1 – Paradigm and process for this inquiry ... 74

List of Tables Table 2.1 – Overview of five sections in the literature review of spirituality... 14

Table 2.2 – Concept and practice of values: summary of references ... 33

Table 2.3 – The chance of occurrence of prostate cancer ... 47

Table 3.1 – Basic beliefs of alternative inquiry paradigms – updated ... 71

Table 3.2 – Five philosophical assumptions about a constructivist paradigm ... 72

Table 6.1 – Age-related matters ... 180

Figure

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References

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