Spinal cord compression secondary to cancer: disability and rehabilitation Gail Eva Department of Nursing and Midwifery University of Stirling Submitted for the degree of Doctor of Philosophy June 2007 Contents List of Tables................................................................................................................xii List of Figures ............................................................................................................ xiii Abstract ........................................................................................................................xiv Introduction .........................................................................................................................xiv Research aims and questions.............................................................................................xiv Study design ......................................................................................................................... xv Results.................................................................................................................................... xv Conclusions.........................................................................................................................xvii Prologue and Acknowledgements.......................................................................xviii PART I INTRODUCTION AND LITERATURE REVIEW................................... 1 Chapter 1 Metastatic spinal cord compression .................................................. 2 1.1 Introduction.................................................................................................................. 2 1.2 Overview of metastatic spinal cord compression ................................................... 2 1.2.1 Incidence and aetiology .................................................................................................... 2 1.2.2 Diagnosis and treatment................................................................................................... 3 1.2.3 Prognosis............................................................................................................................. 4 1.2.4 Consequences of spinal cord compression..................................................................... 5 1.3 Rehabilitation in metastatic spinal cord compression............................................ 6 1.3.1 Approaches to rehabilitation............................................................................................ 6 1.3.2 Representations of rehabilitation................................................................................... 19 1.3.3 Questions arising out of these representations............................................................ 21 Chapter 2 Palliative care rehabilitation............................................................. 23 2.1 Introduction................................................................................................................ 23 2.2 Operationalising rehabilitation in palliative care.................................................. 23 2.2.1 Settings .............................................................................................................................. 25 2.2.2 Professionals..................................................................................................................... 26 ii 2.2.3 Procedures ........................................................................................................................ 28 2.2.4 Interventions..................................................................................................................... 29 2.2.5 Summary........................................................................................................................... 32 2.3 Partnership and participation .................................................................................. 32 2.3.1 The imagery of ‘helping’................................................................................................. 33 2.3.2 The nature of the partnership in palliative care rehabilitation.................................. 35 2.3.3 Disability as synonymous with deficiency................................................................... 36 2.4 The relationship between a life-threatening illness and disability..................... 38 2.4.1 Definitions of disability................................................................................................... 38 2.4.2 The Social Model of disability........................................................................................ 39 2.4.3 The implications for rehabilitation in palliative care.................................................. 41 2.5 The need for patients’ perspectives on the experience of disability................... 44 2.5.1 A brief summary so far ................................................................................................... 44 2.5.2 The lived experience of disability and life-limiting illness ........................................ 45 2.5.3 Anne’s story...................................................................................................................... 49 2.6 Conclusion .................................................................................................................. 51 PART II RESEARCH DESIGN AND METHODOLOGY................................... 54 Chapter 3 Research aims and design ................................................................. 55 3.1 Introduction................................................................................................................ 55 3.2 Researching complex interventions ........................................................................ 55 3.3 Research aims and questions ................................................................................... 57 3.4 Research design.......................................................................................................... 58 3.4.1 Question 1: Consequences of disability ........................................................................ 58 3.4.2 Question 2: Patients’ strategies for managing disability ............................................ 61 3.4.3 Question 3: Health care professionals’ views on disability and rehabilitation ....... 61 3.4.4 Question 4: Provision of rehabilitation and effects ..................................................... 61 3.4.5 Question 5: Reasons for non-provision of rehabilitation............................................ 62 iii 3.4.6 Summary........................................................................................................................... 63 3.5 Case study................................................................................................................... 64 3.5.1 Strengths of case study methods ................................................................................... 65 3.5.2 Limitations of case study methods................................................................................ 66 3.5.3 Case study ‘trade-offs’..................................................................................................... 67 3.5.4 Case study research and complex interventions ......................................................... 70 3.5.5 Identifying contexts, mechanisms and outcomes........................................................ 71 3.6 Quality of life data ..................................................................................................... 74 3.7 Sampling ..................................................................................................................... 75 3.8 Interviewing strategy ................................................................................................ 77 3.8.1 Realism versus phenomenology.................................................................................... 78 3.8.2 Flexible design.................................................................................................................. 80 3.8.3 A note on narrative.......................................................................................................... 81 3.9 Analytical strategy..................................................................................................... 81 3.9.1 Process tracing.................................................................................................................. 81 3.9.2 The constant comparative method ................................................................................ 84 3.9.3 Narrative ........................................................................................................................... 87 3.10 The audit ..................................................................................................................... 88 3.11 Summary..................................................................................................................... 90 Chapter 4 Philosophical considerations............................................................ 92 4.1 Introduction................................................................................................................ 92 4.1.1 Realism and antirealism.................................................................................................. 92 4.1.2 Borrowing from grounded theory................................................................................. 92 4.1.3