How people with Intellectual Disabilities experience transitions through the Transforming Care programme : a grounded theory study

8 Chapter 1: Introduction and Literature Review 9 1.1. Chapter Overview 9 1.2. Introduction to and Definition of Key Terms 10 1.2.1. Intellectual Disabilities 10 1.2.2. Hospitals and Institutions 10 1.2.3. Transitions 11 1.3. My Relationship to the Topic 12 1.4. Epistemological Position 12 1.5. The Context of Transitions for People with ID 15 1.5. 1 The Historical and Cultural Context 15 1.5. 1.1. Moves Towards Institutionalisation for People with ID 15 1.5. 1.2. Moves Towards Deinstitutionalisation 16 1.5. 2. The Political and Economic Context 17 1.5. 2.1. Issues with Housing Options in the Community 17 1.5. 2.2. Where People with ID live 19 1.5. 3. Winterbourne View and Transforming Care 20 1.6. Systematic Literature Review 23 1.6. 1 Summary of Findings from Literature Review 25 1.6. 1.1. Transitions from Institutions and Hospitals 26 1.6. 1.2. Transitions from Forensic Settings 34 1.6. 1.3. Transitions from the Family Home 35 1.6. 1.4. Transitions from Other Settings 36 1.6. 1.5. Transitions as part of Transforming Care 37 1.6. 2. Synthesis of Findings 39 1.6. 3. Evaluation the Literature 40 1.7. Rational for the Current Project 41 Chapter 2: Methodology 43 2.1. Design 43 2.1.1. Qualitative Approach 43 2.1.1.1. Assessing Quality of the Research 43 2.1.2. Grounded Theory 44 2.1.2.1. Consideration of other Methodologies 44 2.1.3. Altering the Method – Issues of Power 44 Page 4 of 216 2.1.3.1. Dyadic Interviewing Technique 45 2.1.3.2. Keeping the Person with ID’s Voice Central 46 2.1.4. Other Adaptations for Research in ID Field 46 2.1.4.1. Issues of Understanding 48 2.2. Participants 49 2.2.1. Inclusion and Exclusion Criteria 49 2.2.2. Participant Recruitment 50 2.2.3. Participant Information 51 2.3. Service User Consultation 54 2.3.1. During Project Design 54 2.3.2. Dissemination 55 2.4. Ethical Considerations 56 2.4.1. Ethical Approval 56 2.4.2. Issues of Consent 56 2.4.3. Maintaining Confidentiality 57 2.4.4. Participant Wellbeing 57 2.5. Procedure 58 2.5. 1. Development of Interviews 58 2.5. 2. Interview Procedure 58 2.5. 3. Data Analysis 61 Chapter 3: Results 65 3.1. Concept: A Restricted Story 68 3.1.1. Category: Feeling Unsafe and Controlled by Others 68 3.1.1.1. Sub-category: Feeling Unsafe 68 3.1.1.2. Sub-category: Feeling Controlled 70 3.1.2. Category: Internalising a Restricted Identity 73 3.1.3. Category: Living with a Sense of Threat 75 3.1.4. Category: Hearing Exceptions 78 3.2. Concept: Going Through Transition 80 3.2.1. Category: Being Given a Chance 81 3.2.2. Category: Going through the Processes of Transition 82 3.2.2.1. Sub-category: Learning to believe 83 3.2.2.2. Sub-category: A Big and Scary Thing 85 3.2.2.3. Sub-category: Managing Loss 87 3.2.2.4. Sub-category: Going through Uncertainty 89 3.2.2.5. Sub-category: Learning to Feel Safe in New Relationships 92 3.4. Concept: A Widening Story 94 3.4.1. Category: Being Considered Differently by Others 95 3.4.1.1. Sub-category: Needing others to be Reliable 95 3.4.1.2. Sub-category: People Seeing Different Sides to Me 98 Page 5 of 216 3.4.2. Category: Changing Ideas about Who I Am 101 3.4.2.1. Sub-category: Becoming the Real Me 102 3.4.2.2. Sub-category: Feeling Connected 104 3.4.2.3. Sub-category: Feeling Equal Now 106 3.4.3. Category: Adapting to a New Life 108 3.4.3.1. Sub-category: Learning how to Have Control 108 3.4.3.2. Sub-category: Facing Problems Differently 110 Chapter 4: Discussion 112 4.1. Revisiting the Research Question 112 4.1.1. The Type of Transition 113 4.1.2. The Nature of Environments 115 4.1.3. The Characteristics of the Person Transitioning 117 4.2. Clinical Implications 121 4.2.1. Overall Implications 122 4.2.2. Specific Clinical Implications 123 4.2.2.1 Understanding other perspectives 123 4.2.2.2. Preparing to Move 123 4.2.2.3. Clearer Pathways 124 4.2.2.4. Increased Local Services 124 4.2.2.5. Wider Understanding of Behaviours which Challenge 125 4.3 Methodological Considerations 125 4.3.1 Strengths of the Current Project 125 4.3.2 Limitations of the Current Project 126 4.4. Areas for Future Research 128 4.4.1. Longitudinal Study 128 4.4.2. Young Adults / People who Are Non-Verbal 128 4.4.3. Significant Others’ Views on Transitions 129 4.5. Concluding Comments 129