AN EXPLORATION OF THE EXPERIENCES OF PAID SOCIAL CARE STAFF WHO HAVE SUPPORTED AND/OR CURRENTLY SUPPORT PEOPLE WITH LEARNING DISABILITIES LIVING WITH CANCER IN RESIDENTIAL SERVICES ACROSS WALES: A GROUNDED THEORY STUDY. TINA CRIMES A submission presented in partial fulfilment of the requirements of the University of South Wales/Prifysgol De Cymru for the degree of Doctor of Philosophy. April 2014 “When it comes to the pinch, human beings are heroic.” George Orwell (English Novelist and Essayist, 1903-1950) 2 Table of Contents Glossary of terms .....................................................................................................................8 List of tables..............................................................................................................................9 List of figures..........................................................................................................................10 List of boxes ............................................................................................................................11 List of appendices...................................................................................................................12 Acknowledgements.................................................................................................................13 Abstract...................................................................................................................................15 Introduction............................................................................................................................18 1.1. Origin, purpose and context of this study ...........................................................18 1.2. Using constructivist grounded theory..................................................................20 1.3. Organisation of the thesis .....................................................................................23 CHAPTER 1 ...........................................................................................................................25 Literature Review ..................................................................................................................25 1.1. Learning disability.................................................................................................30 1.1.1. What is a learning disability? ...........................................................................30 1.1.2. The current incidence and prevalence of learning disability in the UK ...........33 1.1.3. The history of and changing philosophy surrounding learning disability and service provision ............................................................................................................35 1.1.4. Deinstitutionalisation........................................................................................41 1.1.5. Ageing ..............................................................................................................43 1.1.6. Health inequalities and people with learning disability....................................49 3 1.2. Cancer.....................................................................................................................59 1.2.1. Learning disability and cancer..........................................................................60 1.3. Paid social care staff in the UK ............................................................................64 1.3.1. Paid social care staff supporting people with learning disabilities...................64 1.3.2. Changing social care policy context.................................................................65 1.3.3. Health and social care divide............................................................................68 1.3.4. Challenges for paid social care staff supporting people with learning disabilities ......................................................................................................................70 1.4. Summary ................................................................................................................71 1.5. Aims and objectives of this study .........................................................................72 CHAPTER 2 ...........................................................................................................................74 Methodology and Methods....................................................................................................74 2.1. Social research: its epistemologies and ontology ................................................75 2.2. Methodology...........................................................................................................78 2.2.1. Ethnography and Phenomenology....................................................................78 2.2.2. Grounded theory ...............................................................................................82 2.2.3. What is Grounded Theory?...............................................................................83 2.2.4. Grounded theory and its dichotomous trajectory .............................................86 2.2.5. Constructivist Grounded Theory ......................................................................90 2.2.6. Reflexivity ........................................................................................................94 2.2.7. The use of constructivist grounded theory in this study...................................97 2.3. Study Research Design..........................................................................................99 2.3.1. Sample ............................................................................................................102 2.3.2. Recruitment ....................................................................................................105 2.3.3. Ethical considerations.....................................................................................111 2.3.4. Fieldwork........................................................................................................117 2.3.5. Transcription...................................................................................................125 4 2.3.6. Data Analysis..................................................................................................127 2.4. Evaluation criteria within the qualitative paradigm........................................132 2.4.1. Grounded theory evaluation criteria ...............................................................134 2.4.2. Establishing constructivist grounded theory evaluation criteria.....................138 2.5. Summary ..............................................................................................................144 CHAPTER 3 .........................................................................................................................146 Role Identity .........................................................................................................................146 3.1. Staff Profile ..........................................................................................................148 3.2. Staff know best.....................................................................................................160 3.3. Staff commitment ................................................................................................164 3.4. Special relationship .............................................................................................180 3.5. Being strong .........................................................................................................185 3.6. Being professional................................................................................................189 3.7. A reflective account of role identity ...................................................................197 3.8. Summary ..............................................................................................................197 CHAPTER 4 .........................................................................................................................199 Role Ambiguity.....................................................................................................................199 4.1. Tenants’ barriers .................................................................................................201 4.2. Healthcare barriers .............................................................................................214 4.3. Knowledge Barriers.............................................................................................231 4.4. Internal Barriers..................................................................................................242 4.5. External barriers .................................................................................................260 4.6. Communication barriers.....................................................................................264 4.7. A reflective account of role ambiguity...............................................................270 4.8. Summary ..............................................................................................................270 CHAPTER 5 .........................................................................................................................273 5 Role Emotions.......................................................................................................................273