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City Research Online City Research Online City, University of London Institutional Repository Citation: Baboulene, K. (2020). Meaning-making of the subjective experience of psychosis, when subject to a dominant psychiatric discourse: a dynamic phenomenological and discursive analysis. (Unpublished Doctoral thesis, City, University of London) This is the accepted version of the paper. This version of the publication may differ from the final published version. Permanent repository link: https://openaccess.city.ac.uk/id/eprint/26434/ Link to published version: Copyright: City Research Online aims to make research outputs of City, University of London available to a wider audience. Copyright and Moral Rights remain with the author(s) and/or copyright holders. URLs from City Research Online may be freely distributed and linked to. Reuse: Copies of full items can be used for personal research or study, educational, or not-for-profit purposes without prior permission or charge. 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City Research Online: http://openaccess.city.ac.uk/ [email protected] Meaning-Making of the Subjective Experience of Psychosis, When Subject to a Dominant Psychiatric Discourse: A Dynamic Phenomenological and Discursive Analysis Portfolio for Professional Doctorate in Counselling Psychology Katy Baboulene City University Department of Psychology Submitted December 2020 i Part 1: The Research Preface ……………………………………………………………………………………… vi Abstract ……………………………………………………………………………………... 1 Introduction ………………………………………………………………………………… 3 Madness …………………………………………………………………………………….. 6 Humanism …………………………………………………………………………………. 13 Human Rights …………………………………………………………………………...… 15 Critical and Alternative Perspectives …………………………………………….……….. 16 Critiques of Diagnosis …………………………………………………………………….. 18 Neoliberalism and Mental Health…………………………………………………………...20 Mainstream Approaches to Psychosis in the UK……………………………………………23 Alternatives – Phenomena, Phenomenology and Discourse ………………………………. 26 A Therapeutic Approach ……………………………………………………………...…… 31 Dominant Discourses Obscuring Meaning and the Person? ………………………………. 33 Qualitative Research in Psychology ……………………………………………………….. 37 Contemporary Qualitative Research on the Experience of Psychosis …………………...… 38 My Approach …………………………………………………………………………...….. 46 A Dual Focus Methodology …………………………………………………….……..…… 49 Methods ………………………………………………………………………………….…. 67 Design ……………………………………………………………………………………… 67 Service User Consultation ………………………………………………………………….. 68 Interview Schedule Development ………………………………………………………….. 68 Ethical Approval ………………………………………………………...………….……… 69 Sample ………………………………………………………………………………………69 Safety of Participants ……………………………...…………………..…….………….….. 70 Setting ………………………………………………………………………….……......…. 70 Recruitment and Participant Selection ………………………………………………..…… 71 The Participants ……………………………………………………………….………….... 72 Case Studies ………………………………………………………………………………... 73 Procedure ………………………………………………………………..……………….… 78 Interviews………………………………………………………………..……………....… 79 Ethics of Interpretation………………………………………………………………………80 Analysis …………………………………………………………………..…………….….. 82 The Questions………………………………………………………………………………..84 Quality ……………………………………………………………….…………………..… 86 Fidelity .…………………………………………………………….…………………….…87 Utility ……………………………………………………………….……………..……… 88 Reflexivity ……………………………………………………………………………...….. 88 IPA Results ……………………………………………………………...…………………. 91 Introduction of Findings ……….……………………………………………………….….. 91 Diagram 1: Connection between the implicitly expressed meanings (suggestive) and explicitly expressed meanings (manifest) represented in the master themes ……… 94 ii Table 1. Master Table of Themes ………………………………………………………….. 96 The Participants’ Meaning-Making ………...……………………………………………… 97 Jo ………………………...…………………………………………………………… 73 Maria ……………………………………...………………….………………….…… 74 Doreen……………………...…………………………………………………………. 75 Jacky ………………...……………………………………….…………………..…… 76 Interaction of Themes …………………………………………………………………..…. 151 Master Themes ………………………………………………………………………….… 151 Diagram 2. Dynamic and Multidirectional Interaction of Themes ………...…………….. 151 Summary of Meaning-Making as Related to Recovery………………………………….... 152 FDA Results……………………………………………………………………………..…155 The Discourses …………………………………………………………………………… 157 Diag. 3. Venn Diagram ……….…………………………………………………………... 158 1. Constructed as ‘an illness like any other’ …………………………………………….…161 2. Constructed as dangerous/risky/scary ………………………………………………...... 177 3. Constructed as abnormal/other/madness …………………………………………...…... 183 4. Constructed as an understandable part of the spectrum of human experience arising from a humanistic psychosocial discourse ………………………….………..…… 190 5. Constructed as trauma related response to adverse life events/threat …………….…….202 Discussion of the Integration of IPA & FDA Findings ……………………………...…… 207 Phenomenological Consequences of the Subjective Embodied Experience of Psychosis and Implications of the Discursive Constructions Deployed in Meaning-Making... 211 Figure 1. Impact of discourses on lived experience and meaning-making ………………...198 So, what did I find? ………………………………………………………………………...218 Table 1. Master Themes and Subthemes …………………………………………………. 220 Table 2. Discursive Constructions of Psychosis ………………………………………….. 221 Intersection of Language and Experience …………………………………………….….. 224 How dangerous am I? …………………………………………………………………… 224 Is psychosis a consequence of trauma? …………………………………………………. 227 Who am I? Experiential consequences of loss ………………………………………….. 229 Meaning in madness or meaningless ‘psychotic ramblings’? ……………………………. 238 Who can I trust? Power and threat? …………………………………………………..….. 240 How can I live? ‘Experiencing oneself as the agent’ ……………………………….....… 242 How can I manage life? Is Psychosis a life-long condition requiring medication for life? 245 Summary - Interaction of discourse and lived experience – a clash of meanings? ……… 247 Conclusion ………………………………………...……………………………………... 249 Recommendations for practice……………………………………………….……..260 Limitations and further research…………………………………………………… 263 References ………………………………………………………………………………... 265 Appendix 1: Application for Ethical Approval …………………………………..………. 287 Appendix 2: Ethical Approval Letter ………………………………..…………………… 297 Appendix 3: Participant Study Information Sheet ……………………………………….. 298 Participant Recruitment Poster ……………………..……………………… 302 iii Participant Consent Forms ………………………………………………… 303 Participant Debrief Forms ……………………………………….……..……304 Appendix 4: Interview Schedule ……………………………………………………….… 305 Appendix 5: Transcription Notation …………………………..…………………………. 307 Appendix 6: Master Table of IPA Themes ………………………………………………. 308 Appendix 7: Summary Grid Table of IPA Master Themes………………………………...316 Appendix 8: The Questions in Pursuit of Meaning…...………………………………..…. 321 Appendix 9: Participant Table of Superordinate Themes . ……………………………….. 322 Part 2: Case Studies Developments in Understanding Psychosis and Therapeutic Interventions: Two Case Studies ………………….…..…………………………….……………………….. 337 The Messiah …………………………………..……………………........…….….. 339 I am a ‘schizophrenic’ – am I? ……………………..………………………….….. 346 Conclusion …………………………………………………………...………....……...… 355 References ………………………………………………………….....................…….…. 356 Part 3: Publishable Paper Introducing a Dual Focus Methodology Utilising IPA and FDA in Understanding Meaning-Making of the Experience of Psychosis When Subject to a Psychiatric Discourse and the Interplay Between Language an Experience …………………. 357 References ………………………………………………....…………………….……….. 370 iv City, University of London Northampton Square London EC1V 0HB United Kingdom T +44 (0)20 7040 5060 THE FOLLOWING PARTS OF THIS THESIS HAS BEEN REDACTED FOR COPYRIGHT AND DATA PROTECTION REASONS: Part 2: Case study..........................................................................................................336-356 Part 3: Publishable paper................................................................................................357-372 www.city.ac.uk Academic excellence for business and the professions For Mum With many thanks to my supervisor, Professor Carla Willig for her patience, encouragement, expert guidance and knowledge throughout the research journey! v Preface This course of study was inspired by the painful childhood experience of growing up with my mother, who was struggling to cope emotionally and was in receipt of psychiatric services. When I was six years old, she gave birth to my brother and subsequently became postnatally depressed, which escalated to the point that she started to develop unusual perceptual experiences. These experiences included seeing and hearing things that were not shared by the rest of the family, and she would frequently engage in conversations and behaviours that seemed to be related to some other reality and existence. I was aware that she was unhappy and that some of her behaviours were unusual, with claims that she was communicating with the Queen and royal family. She was also awake most of the night and napping in the daytime. My mother reverted to speaking her first language, Greek, which infuriated my father who was already struggling to cope with her and the responsibilities of having a young family. My father, being Scottish, could not understand Greek, beyond greetings or menus – or my mother’s seemingly bizarre behaviour – and he was
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