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Spirituality and Spiritual Changes in People Living with Dying

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Spirituality and Spiritual Changes in People Living with Dying http://researchcommons.waikato.ac.nz/ Research Commons at the University of Waikato Copyright Statement: The digital copy of this thesis is protected by the Copyright Act 1994 (New Zealand). The thesis may be consulted by you, provided you comply with the provisions of the Act and the following conditions of use: Any use you make of these documents or images must be for research or private study purposes only, and you may not make them available to any other person. Authors control the copyright of their thesis. You will recognise the author’s right to be identified as the author of the thesis, and due acknowledgement will be made to the author where appropriate. You will obtain the author’s permission before publishing any material from the thesis. Spirituality and Spiritual Changes in People Living with Dying A thesis submitted in fulfilment of the requirements for the degree of Masters of Arts in Psychology at The University of Waikato by Deidre du Toit 2014 i Abstract This study investigated spirituality and the spiritual changes people living with dying may experience. The study was based on a phenomenological perspective where the centrality of the participant’s personal worldview and experiences was highlighted. Data was gathered through open and semi-structured interviews with three participant groups: health care professionals working in palliative care and hospices, people who had experienced a serious or life-limiting health condition, and the caregivers of terminally ill patients. Interviews were recorded and transcribed verbatim. A thematic analysis approach was used to analyse the data. The findings showed a diversity of spiritual understandings and suggested that participants understood neither religion nor spirituality in exactly the same manner. The analysis revealed that some participants used religion to describe their understandings of spirituality. Some participants regarded the terms ‘spiritual’ and ‘religious’ as synonymous while for others the terms were conceptually independent. Participants used a variety of definitions to describe spirituality. These primarily involved regarding spirituality as a belief in a God or a higher being, or as a relationship with or connection to a God or higher being. Participants also viewed spirituality either in terms of the human spirit or soul and its continued existence into an afterlife, or in terms of mysterious events and the paranormal. Findings further revealed that many people living with dying described periods of gradual spiritual growth, or sudden and unexpected spiritual transformation: however, not all people reported spiritual changes. These findings imply that people may have a dominant spiritual perspective through which they understand experiences. Identification of these perspectives in clinical settings ii may make it possible to tailor spiritual support resources according to individual spiritual perspectives. However, further exploration of the different spiritual perspectives is suggested as different groups may have different spiritual needs. iii Acknowledgements I would like to express my sincere gratitude to the participants of this study. I appreciate your generosity and willingness to share your stories with me. I hope my analysis of your stories reflected their unique nature. I wish to convey my deep thanks to my research supervisors. Dr Neville Robertson, your input, advice and thoughtful comments during this study has been invaluable. Dr Tess Moeke-Maxwell, our conversations helped me to see things from a different perspective, you drew my attention to ideas I might otherwise have overlooked. Last but definitely not least I would like to extend my warmest thanks to my family. Stephen, Dominique and Donovan, for travelling this journey with me and always believing I could do it. To my mum, Marilyn, and sisters, Adele and Karene, thank you for your ongoing interest and encouragement. iv Table of Contents Abstract .................................................................................................................... i Acknowledgements ................................................................................................ iii List of Tables.......................................................................................................... vi Table of Figures ..................................................................................................... vi Chapter 1: Introduction ........................................................................................... 1 Statement of Purpose........................................................................................... 3 Phenomenology ................................................................................................... 3 Position of the researcher .................................................................................... 4 Outline of Thesis ................................................................................................. 8 Chapter 2: Literature Review ................................................................................ 10 Investigating Spirituality ................................................................................... 10 Spiritual changes and transformation ................................................................ 21 Spirituality and Religion in New Zealand ......................................................... 24 Chapter 3: Method................................................................................................. 33 Qualitative Research ......................................................................................... 33 Participants ........................................................................................................ 35 Interviews .......................................................................................................... 37 Analysis ............................................................................................................. 42 v Ethical Considerations ...................................................................................... 44 Summary ........................................................................................................... 47 Chapter 4: Findings ............................................................................................... 48 Introduction ....................................................................................................... 48 Spirituality synonymous with religion .............................................................. 54 Spirituality and religion as distinct concepts .................................................... 80 Māori Spirituality ........................................................................................... 106 Importance of religion and spirituality ............................................................ 108 Summary ......................................................................................................... 109 Chapter 5: Conclusion ......................................................................................... 111 General implications ....................................................................................... 111 Educational implications ................................................................................. 116 Research Limitations ....................................................................................... 118 Future research ................................................................................................ 119 References ........................................................................................................... 121 Appendix A ......................................................................................................... 138 Appendix B ......................................................................................................... 141 Appendix C ......................................................................................................... 145 Appendix D ......................................................................................................... 148 Appendix E ......................................................................................................... 149 vi List of Tables Table 1. Characteristics of different spiritual perspectives as identified in the current study. ............................................................................................... 120 Table of Figures Figure 1. The healthy person’s world .................................................................... 6 Figure 2. The sick person’s world .......................................................................... 6 Figure 3. The dying person’s world ....................................................................... 6 Figure 4. Doctor’s view of a dying patient. ........................................................... 6 Figure 5. Religious and spiritual self-description of a New Zealand sample based on the Massey International Survey Programme .......................................... 20 Figure 6. Diversity of Spirituality Model ............................................................. 52 1 Chapter 1: Introduction All people live with the knowledge that they are eventually going to die. However, to live with a life-threatening illness involves, among other things, dealing with the unavoidable finitude of life (Faber, Egnew, & Faber, 2004). During the progression
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