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 2012
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 and flows.
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
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. My family is always a source of love and support and I especially thank my daughter, Louise, and my son Philip. My wife Marie Anne has my deepest thanks and love for her constant support and devotion during my PhD journey and over a much, much longer married life.
The poem on the following page is quoted from Tao Te Ching, translated by Stephen Mitchell (1988).
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. Tao Te Ching
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 Quantitative, qualitative or mixed methodologies?... 68 Page i
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 Conclusion... 177 Page ii
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 Conclusion... 227 Page iii
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 F Analysis processes... 294 Page iv
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 Table 6.2 Overview of subheadings used in the thematic analysis... 181 Page v