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Experiences of Disengagement from Mental Health Services: an Interpretative Study

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EXPERIENCES OF DISENGAGEMENT FROM MENTAL
HEALTH SERVICES: AN INTERPRETATIVE STUDY

by
CHRISTOPHER WAGSTAFF

A thesis submitted to the University of Birmingham for the degree of DOCTOR OF PHILOSOPHY

Nursing, Health & Population Sciences College of Medical & Dental Sciences
University of Birmingham
2015

University of Birmingham Research Archive

e-theses repository

This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation.

Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder.

ABSTRACT

Whilst there is evidence of a range of effective treatments available for people with severe mental health problems (SMHP), people frequently disengage from mental health services (MHS). This thesis investigates experiences of disengagement of people with SMHP and comprises two studies: 1) semi-structured interviews to elicit the experiences of people with SMHP and a history of disengagement from MHS; and 2) building on those findings, focus groups with staff from assertive outreach teams (specialising in providing care for people with SMHP and a history of disengagement).

The participants were those perceived as the most disengaged from MHS yet they were willing to engage with the research. Interpretative phenomenological analysis was used to develop themes for individual participants and then across the participants. Disengagement from MHS was part of a wider experience of a limited connection to social structures, including an ambivalent and complex relationship with MHS. There was a sense of sadness in all aspects of the participants’ experience but they had developed strategies to reinforce personal resilience and to reassert personal identity.

The findings of this thesis can be employed to better understand the context of disengagement from MHS and consequently better inform future engagement with this client group

ACKNOWLEDGEMENTS

Firstly, I would like to acknowledge my office mates Tracey Valler and Helen Frank for putting up with me whilst I wrote my PhD. Helen, in particular, showed great sufferance during my analysis of study 1. I would also like to thank various colleagues – Dr Amelia Swift, Dr Alistair Hewison, Dr Caroline Bradbury-Jones, Dr Tarsem Singh-Cooner, Prof Fiona Irvine, Dr Michael Larkin, and Richard Salkeld amongst others – who have offered invaluable support and guidance along the way.

I would also like to thank all the people in the participating NHS Trust for their support, time and patience whilst I was doing both study 1 and 2. Thanks must also go out to the seven participants in study 1 to whom the world of academia may seem a strange place, but agreed to share their experiences with me, especially to ‘Clue’ who has subsequently passed away. Without them there would not have been a thesis.

I must thank my supervisors Dr Bob Williams, Dr Derek Farrell and Dr Herman Wheeler for their input at various stages of the project, but most of all to Dr Hermine Graham for being with me from beginning to end.

Finally I would like to thank my eldest two sons, Zach and Sheridan, for taking an interest in the study and my wife, Angie, for providing constructive criticisms at opportune moments. Also I must thank my mother, Jean, for both proof reading this thesis and unflagging support throughout my education. Related to which I would like to thank my late father, Ian, for being an inspiration to me and without whom I probably would not have done a PhD.

TABLE OF CONTENTS

OVERVIEW .............................................................................................................................1 CHAPTER 1: INTRODUCTION ...........................................................................................3

1.1 Definitions ...................................................................................................................5
1.1.1 1.1.2 1.1.3 1.1.4 1.1.5
Severe mental health problems.............................................................................5 Dual diagnosis ......................................................................................................5 Disengagement from mental health services........................................................7 Assertive Outreach .............................................................................................13 Summary.............................................................................................................16
1.2 Literature Review ......................................................................................................17
1.2.1 1.2.2
Summary and critique of the literature...............................................................19 Background literature summary .........................................................................30
1.3 Study Aim and Research Questions...........................................................................31

CHAPTER 2: METHODOLOGY ........................................................................................33

2.1 IPA and Philosophical Underpinnings.......................................................................33
2.1.1 2.1.2 2.1.3
Phenomenology, hermeneutics and idiography..................................................33 Critique of phenomenology in nursing research.................................................34 Interpretative phenomenological analysis and methodological considerations .38
2.2 IPA and Focus Groups...............................................................................................43

CHAPTER 3: RESEARCH METHOD................................................................................46

3.1 Summary....................................................................................................................46 3.2 Study 1: Method.........................................................................................................46
3.2.1 3.2.2 3.2.3
Sampling, access and recruitment ......................................................................46 Development of the interview schedule .............................................................48 Data collection....................................................................................................48
3.2.4 3.2.5
Data analysis.......................................................................................................50 Ethical issues and trustworthiness of voice........................................................53
3.3 Study 2 .......................................................................................................................58
3.3.1 3.3.2 3.3.3 3.3.4 3.3.5
Background.........................................................................................................58 Sampling, access and recruitment ......................................................................58 Development of the interview schedule. ............................................................58 Method................................................................................................................59 Data analysis.......................................................................................................60

CHAPTER 4: FINDINGS......................................................................................................62

4.1 Participants’ Characteristics ......................................................................................62 4.2 Research Findings......................................................................................................65
Individual idiographic statements.....................................................................................65 4.2.1 4.2.2 4.2.3 4.2.4 4.2.5 4.2.6 4.2.7
Arthur .................................................................................................................65 Black Zee............................................................................................................67 Bubbles...............................................................................................................68 Clue.....................................................................................................................71 Josh.....................................................................................................................72 Rebel...................................................................................................................75 T..........................................................................................................................76
4.3 Superordinate and Subordinate Themes ....................................................................78
4.3.1 4.3.2
Theme A: Limited connection with social structures.........................................80 Theme B: Multiple strategies to reinforce personal resilience and to reassert personal identity .............................................................................................................102

4.4 Study 2 Findings ......................................................................................................110
4.4.1 4.4.2
Summary...........................................................................................................110 The dichotomy of assertive outreach teams’ roles ...........................................111
4.4.3 4.4.4 4.4.5 4.4.6 4.4.7 4.4.8
Words used were an important component of engagement..............................112 Medication is a difficult issue...........................................................................113 Drugs are part of everyday life for service users..............................................113 Cultural aspect to the experience of disengagement ........................................114 Professionals’ awareness of spirituality. ..........................................................117 Age does not make a difference?......................................................................118

CHAPTER 5: DISCUSSION...............................................................................................120

5.1 What are the Experiences of People with a Diagnosis of Severe Mental Health Problems and a History of Disengagement from Mental Health Services? .......................120

5.1.1 5.1.2 5.1.3 5.1.4 5.1.5 5.1.6 5.1.7 5.1.8 5.1.9
Recruitment of participants ..............................................................................122 Limited connections to social structures ..........................................................123 Relationship with mental health services .........................................................126 Medication and the relationship with mental health services...........................129 Models of disengagement.................................................................................130 Identity..............................................................................................................138 Belonging to and exclusion from community and society ...............................140 Disengagement, family and social support.......................................................144 Implications for future practice ........................................................................147
5.1.10 What are the experiences of people with a diagnosis of severe mental health problems and a history of disengagement from mental health services? Conclusion....152

5.2 How do the Research Participants Understand their own Health, Well-being and Illness?................................................................................................................................154

5.2.1 5.2.2
Future practice..................................................................................................159 How do the research participants understand their own health, well-being and illness? Conclusion.........................................................................................................160

5.3 How do the Research Participants Perceive their Needs in Relation to Statutory Mental Health Services?.....................................................................................................161
5.3.1 5.3.2 5.3.3 5.3.4 5.3.5
Perspectives on medication ..............................................................................162 Changing perceptions with age ........................................................................163 Faith, spirituality and solace.............................................................................165 Future practice..................................................................................................166 Conclusion........................................................................................................167
5.4 What are the Research Participants’ Understandings of the Role of Drugs and Alcohol within their Lived Experience?.............................................................................168

5.4.1 5.4.2
Future practice..................................................................................................173 Conclusion........................................................................................................174
5.5 Critique of Study/ Limitations of Study ..................................................................174 5.6 Publication ...............................................................................................................176

CHAPTER 6: CONCLUSION ............................................................................................179

6.1 Implications for Practice..........................................................................................179 6.2 Implications for the Methodology ...........................................................................183 6.3 Implications for Future Research.............................................................................184 6.4 Implications for Policy.............................................................................................185

REFERENCES .....................................................................................................................188 APPENDICES.......................................................................................................................222

Appendix 1: Cycle of Avoidance Permission................................................................222 Appendix 2: Interview Schedule....................................................................................224 Appendix 3: Reflective Diary ........................................................................................226 Appendix 5: Examples of Clustered Codes ...................................................................260 Appendix 6: Summary Table of all Themes ..................................................................272 Appendix 7: Permission from RCN Publishing.............................................................275 Appendix 8: Ethical Approval from BEN NRES ..........................................................276 Appendix 9: Consent Form............................................................................................280 Appendix 10: Patient Information Sheet (PIS1)..............................................................281 Appendix 11: Study 2 Consent Form ..............................................................................286 Appendix 12: Study 2 Participant Information Sheet (PIS2) ..........................................287 Appendix 13: Study 2 Ethical Approval..........................................................................290 Appendix 14: Oxford University Press Permission.........................................................291

LIST OF FIGURES AND TABLES

Figure 1: Process of the Literature Review ..............................................................................18 Figure 2: Biddle et al. (2007) Cycle of Avoidance (COA) ......................................................24 Figure 3: Analysis Process (Wagstaff & Williams, 2014) .......................................................52 Figure 4: Schematic Illustration of the Experience of Social defeat as the Common Mechanism Underlying Six Major Schizophrenia Risk Factors ............................................125

Table 1: Search Terms for the Literature Review ....................................................................17 Table 2: Participants’ Characteristics.......................................................................................62

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    Beatriz Caiuby Labate · Clancy Cavnar Editors Plant Medicines, Healing and Psychedelic Science Cultural Perspectives Plant Medicines, Healing and Psychedelic Science Beatriz Caiuby Labate • Clancy Cavnar Editors Plant Medicines, Healing and Psychedelic Science Cultural Perspectives Editors Beatriz Caiuby Labate Clancy Cavnar East-West Psychology Program Psychiatric Alternatives California Institute of Integral Studies (CIIS) San Francisco, California, USA San Francisco, CA, USA Center for Research and Post Graduate Studies in Social Anthropology (CIESAS) Guadalajara, Mexico ISBN 978-3-319-76719-2 ISBN 978-3-319-76720-8 (eBook) https://doi.org/10.1007/978-3-319-76720-8 Library of Congress Control Number: 2018935154 © Springer International Publishing AG, part of Springer Nature 2018 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made.