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"At the time I didn’t know what was going on, so they diagnosed me with schizophrenia". The lived experience of being diagnosed with schizophrenia for people of Black African and/or Black Caribbean heritage: An Interpretative Phenomenological Analysis. Abigail Gordon A thesis submitted in partial fulfilment of the requirements of the University of East London for the Professional Doctorate in Counselling Psychology University of East London September 2020 ! ! !!"#$%&$%'! ! "#$%&'()*+),)%-.!///////////////////////0! 1! 2)*1#3-1&%!//////////////////////////000! 11! "445)613-1&%.!/////////////////////////00! 111! 78&-)!95&,!:35-1#1:3%-!//////////////////////! 16! ()*+,-.+!///////////////////////////00! /! 01+,234.+521!/////////////////////////000! 6! ;).)35#<!-)5,1%&(&+=!//////////////////////00! >! 75+8,-+4,8!98:58;!//////////////////////000000! <! ?6)561)'!///////////////////////////0! @! 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Acknowledgements Firstly I would like to thank all of the eight participants: Peter, Sandra, Marcie, NSNG9, Glendora, Roy, Mary, Kwame and He-Man (pilot interview) who chose to take part in my research project. Without your engagement and participation the research would not have taken place. I would like to thank my research supervisor Dr Claire Marshall for her interest in my research topic, support and critical guidance throughout the research journey. I would like to thank Dr Pavlos Filippopoulos for his ongoing support. I would like to thank my family and friends who have been amazing over the last few years. I would like to specifically thank my sister Dawn, for her continuous support and being my personal cheerleader. You have witnessed the highs and the many lows on this path of becoming a counselling psychologist. To the One who loves unconditionally and brings peace to my soul. Thank you. ! "!! ! Dedication In loving memory of Winston Harry Gordon and Clytie Jeanne Gordon. ! ""!! ! Abbreviations AESOP Aetiology and Ethnicity in Schizophrenia and Other Psychoses APA American Psychiatric Association APA American Psychological Association BAME Black, Asian and Minority Ethnic BME Black and Minority Ethnic BPS British Psychological Society CPN Critical Psychiatry Network DCoP Department of Counselling Psychology DCP Department of Clinical Psychology DSM Diagnostic and Statistical Manual of Mental Disorders (Version 5) HVN Hearing Voices Network ICD-11 International Statistical Classification of Diseases and Related Health Problems (Version 11) ONS Office for National Statistics ISL Inquiry into ‘Schizophrenia’ label ISPS International Society for Psychological and Social Approaches to Psychosis NHS National Health Service NIMH National Institute of Mental Health UK United Kingdom WHO World Health Organisation ! """!! ! “… All I wanted is someone to talk to… and tell them about the voices in my head. So they call it schizophrenic. That’s what they call it. But even though they call it that, I just say “I hear voices, bad voices in my head”, but they call it schizophrenic”. (Glendora, participant) ! "#!! ! Abstract Schizophrenia has long been a contested and controversial psychiatric diagnosis. Over the last six decades, research has consistently demonstrated that Black, Asian and Minority Ethnic (BAME), specifically people of Black African and/or Black Caribbean descent in the United Kingdom (UK) are more likely to face mental health inequalities and be diagnosed with schizophrenia in comparison to other ethnic groups (Fernando, 2002; 2008; 2010; Read & Dillon, 2013b; Nazroo, 2020). However there has been a paucity in research into the lived experience of receiving a diagnosis of schizophrenia. This research seeks to contribute to the field of counselling psychology and allied professions by exploring the lived experience of receiving a diagnosis of schizophrenia amongst this specific population. The phenomenon was investigated by adopting Interpretative Phenomenological Analysis (IPA) (Smith, Flowers & Larkin, 2009). Semi-structured interviews were conducted with eight participants and subsequently analysed using IPA. The Six-Stages of Analysis was used (Smith et al., 2009) as a process of interacting with the data within an inductive and iterative cycle (Smith, 2007). The consisted of close interaction between the researcher and the text, using line-by-line analysis of each participant’s transcribed interview (Smith et al., 2009). The findings revealed that participants were engaged in a range of meaning-making processes regarding their experiences relating to the diagnosis. Four super-ordinate themes emerged from the data: ‘Schizophrenia is a form of social control’, ‘Living with schizophrenia is a dynamic sentence’, “A spiritual dimension to this experience” and ‘Being Black in the mental health system’. The findings highlighted that receiving a psychiatric