Young People, Their Carers and the Unit Cultures Anne Claveirole Phd Thesis NAPIER UNIVERSITY 2005
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Listening to the Voices in Four Scottish Adolescent Mental Health Units: Young People, their Carers and the Unit Cultures Anne Claveirole PhD Thesis NAPIER UNIVERSITY 2005 LISTENING TO THE VOICES IN FOUR SCOTTISH ADOLESCENT MENTAL HEALTH UNITS: YOUNG PEOPLE, THEIR CARERS AND THE UNIT CULTURES Thesis submitted in partfulfilment of the requirements for the degree of DOCTOR OF PIDLOSOPHY at The Faculty of Health and Life Sciences NAPIER UNIVERSITY by ANNE CLAVEIROLE June 2005 DECLARATION I declare that this thesis is my own work and that no material contained in it has been submitted for another academic award ~ Anne Claveirole ACKNOWLEDGEMENTS Many people have helped in the completion of this thesis. I should like to thank Andy Gibbs and the School of Community Health at Napier University. Without the School's financial support this study would not have been possible. I would also like to thank my colleagues in the mental health team and in the School for their patience and encouragement. Thanks are due to the Association for Professionals in Services for Adolescents (APSA) who paid for my travelling expenses during the data collection. I am indebted to the NHS services where my data was collected for their co-operation. My deepest gratitude goes to the young people, their parents and the unit staff who shared their lives and stories with me. I am most indebted to my supervisors Dr Maureen Macmillan and Dr David Lyall for their unfailing encouragement, advice and kindness. Throughout my studies, they have given their time generously and their academic expertise has been a source of inspiration to me. Several people have shared their time and competence to proof read and comment on parts of the manuscript: Willis Pickard, Martin Gaughan, Morgan Mathers, Neville Singh, Norrie Brown and Allison Alexander. Norrie Brown also assisted me in the completion of graphics. I am most grateful to them all. Special mention must be made of David and Helen Peacock. They offered me a substitute home when mine became temporarily uninhabitable during the last year of writing, and David ensured that my computer remained in good working order throughout the study. Finally, I want to thank my family in France for their constant encouragement and support, and my friends in Britain for their understanding and companionship. 11 ABSTRACT Serious mental health problems among young people are on the increase in Western countries. Involving young people in their mental health care, and working in partnership with them during the treatment process, is a primary concern of all mental health services; their parents have also been promised a place in the health care team. Research into the process and outcomes of hospitalisation of young people in specialist mental health units is complex and therefore limited. Qualitative investigations into the experience of young people as users of these services are few. Making use of ethnographic methods, this study explored young people and their carers' (both parents and staft) experience regarding treatment and participation in decision-making in four Scottish adolescent inpatient or day-care mental health units. The findings suggest that the young people (n = 18) valued the personalised relationships they developed with the staff and their peers and that if these relationships were empowering, they facilitated both treatment and participation in treatment. However, the findings also show that the parents (n = 16) and staff members (n = 21) were sometimes disempowered and that this impaired the overall participative nature of the units. The unit culture was an important contributor to the effectiveness of young people and parent involvement. Making use of concepts from the neighbouring academic field of pastoral theology to interpret the findings, the study concludes with a conceptual framework of what is required for a unit to be more participative. This theoretical framework adds significant elements to the existing knowledge regarding participation in adolescent mental health units. It places relationships of justice and care between all stakeholders at the core of successful participation, hereby drawing attention to the importance of humanistic and ethical considerations in user and carer involvement. iii LIST OF CONTENTS TITLE DECLARATION ............................................................................................................. i ACKN"OWLEDGEMENTS ........................................................................................... ii ABSTRACT .................................................................................................................... iii LIST OF CONTENTS ................................................................................................... iv LIST OF TABLES ....................................................................................................... xiii LIST OF FIGURES AND DIAGRAMS .................................................................... xiv CHAPTER 1: INTRODUCTION ............................................................................... 1 CHAPTER 2: LITERATURE REVIEW ................................................................... 5 Introduction ..................................................................................................................... 5 1. Participation .............................................................................................................. 5 Introduction 1.1 Involvement, Partnership and Participation 1.2 User and Carer Involvement 1.3 Critique of User and Carer Involvement 1.4 Philosophical Background 1.4.1 Postmodernism 1.4.2 A Critique of Postmodernism and Possible Ways Forward 1.5 Ethical Themes 1.5.1 Values 1.5.2 Human Rights 1.6 Religious Themes 1.6.1 Liberation Theology 1.6.2 Pastoral Care 1.6.3 Liberation Theology as a Model for Participative Care 1.6.3.1 Liberating the Person (John Swinton) 1.6.3.2 Liberating the Care Community (Mary Grey) IV 1.6.3.3 Liberating the Context of Care - Socio-political Action (Stephen Pattison) Conclusion 2. Young People ........................................................................................................... 27 Introduction 2.1 Adolescence as a Developmental Phase 2.2 The Sociology of Childhood 2.3 Children and Young People's Rights 2.4 Young People and Participation 2.5 Mental Capacity and Decision-making 2.6 Young People's Mental Health Conclusion 3. Adolescent Mental Health Services ....................................................................... 38 Introduction 3.1 Intensive Treatment Settings 3.1.1 Historical Developments Prior to the Start of this Study (pre-1998) 3.1.1.1 Milieu Therapy 3.1.1.2 Young People's Participation 3.1.1.3 Involvement with Carers and Families 3.1.1.4 The Staff 3.1.1.5 The Role of the Unit 3.1.1. 6 Outcomes 3.1.1.7 Day-care 3.1.2 Developments 1999-2004 3.2 Treatment Issues 3.2.1 Psychosis 3.2.2 Nursing Observation 3.3 Young People's Views of the Mental Health Services 3.4 Carers' and Families' Perspective Conclusion Conclusion ..................................................................................................................... 59 CHAPTER 3: RESEARCH DESIGN AND METHODS ........................................ 60 Introduction ................................................................................................................... 60 1. Epistemology: the Nature of Scientific Knowledge ............................................. 60 1.1 The Object of Knowledge 1.2 The Status of the Object of Knowledge v 2. Methodology ............................................................................................................ 63 2.1 The Quantitative-Qualitative Debate 2.2 Ethnography 2.2.1 Main Characteristics 2.2.2 Epistemological Underpinnings 2.2.3 Credibility 2.2.4 Relevance 2.3 Ethnography and Mental Health Care 3. Design and Methods ................................................................................................ 70 3.1 Aim of the Study 3.2 Research Questions 3.3 Design 3.3.1 Sites 3.3.2 Samples 3.3.3 Data Collection 3.3.3.1 Participant Observation 3.3.3.2 Intervievvs 3.3.3.3 Documents 3.4 The Analytic Process 3.4.1 Data Display 3.4.2 Data Management and Reduction 3.4.3 Analysis 3.4.3.1 Content Analysis 3.4.3.2 Making Sense of the Data 3.4.3.3 Theorising 3.4.4 Fulfilling Criteria of Trustvvorthiness 3.4.4.1 Internal Validity 3.4.4.2 Reliability 3.5 Reflexivity: the Place of the Researcher in the Research 3.5.1 Values 3.5.2 Roles 3.5.3 Relationships, Feelings and Emotions 3.6 Ethical Issues 3.6.1 Confidentiality 3.6.2 Informed Consent 3.6.3 Mental State 3.6.4 Causing Distress 3.6.5 Use ofPovver 3.7 Gaining Ethical Approval and Negotiating Access 3.7.1 Ethical Approval 3.7.2 Access 3.8 Limitations of the Research Conclusion ................................................................................................................... 105 VI CHAPTER 4: YOUNG PEOPLE'S PERSPECTIVE ............................................. 106 Introduction ................................................................................................................. 106 1. Base Data ............................................................................................................... 107 2. Young People's Views Regarding their Treatment ........................................... 109 2.1. Being with Other People 2.2. Admission to a Specialist Unit 2.3. One-to-one Therapy 2.4. Meetings and Groups 2.5. Medication 2.6. Nursing Observations