Exploring the experiences of patients with primary and secondary, non- cancer related, lower limb lymphoedema during the intensive and maintenance phases of Complex Decongestive Therapy and its’ impact on their lives. Mary Costello, BScN, MScN. School of Nursing and Midwifery RCSI A thesis submitted to the School of Postgraduate Studies, Faculty of Medicine and Health Sciences, Royal College of Surgeons in Ireland, In fulfilment of the Degree of Doctor of Philosophy Supervisors: Dr Declan Patton Professor Zena Moore March 2019 Declaration I declare that this thesis, which I submit to RCSI for examination in consideration of the award of Doctor of Philosophy is my own personal effort. Where any of the content presented is the result of input or data from a related collaborative research programme this is duly acknowledged in the text such that it is possible to ascertain how much of the work is my own. I have not already obtained a degree in RCSI or elsewhere on the basis of this work. Furthermore, I took reasonable care to ensure that the work is original, and, to the best of my knowledge, does not breach copyright law, and has not been taken from other sources except where such work has been cited and acknowledged within the text. Signed _____________________________________________________ Student No. 10100768 Date: 02/04/2019 2 Table of Contents Declaration .......................................................................................................... 2 Table of Contents ................................................................................................ 3 List of Abbreviations ............................................................................................ 9 List of Figures ................................................................................................... 10 List of Tables..................................................................................................... 11 Presentations arising from the dissertation ....................................................... 12 Summary .......................................................................................................... 14 Acknowledgements ........................................................................................... 17 Chapter 1 Introduction ...................................................................................... 18 1.1 Background ............................................................................................. 18 1.2 Research Questions ................................................................................ 21 1.3 Purpose of the study ................................................................................ 21 1.4 Research Aims and Objectives ................................................................ 22 1.5 Presentation of the thesis ........................................................................ 22 1.6 Summary ................................................................................................. 23 Chapter 2 Literature Review ............................................................................. 25 2.1 Introduction .............................................................................................. 25 2.2 Search Strategy ....................................................................................... 25 2.3 Aetiology of Lymphoedema ..................................................................... 26 2.3.1 Introduction ........................................................................................ 26 2.3.2 Anatomy of the Lymphatic System .................................................... 27 2.3.3 Scientific Advances in Lymphology ................................................... 28 2.4 Classification and staging of Lymphoedemas .......................................... 29 2.4.1 Introduction ........................................................................................ 29 2.4.2 Primary and Secondary Lymphoedema ............................................ 30 2.4.3 Summary ........................................................................................... 32 2.5 Lymphoedema – Epidemiology ............................................................... 32 2.5.1 Introduction ........................................................................................ 32 2.5.2 Definitions .......................................................................................... 33 2.5.3 Prevalence of lymphoedema ............................................................. 34 2.5.4 Primary Lymphoedema ..................................................................... 36 2.5.5 Non-Cancer Related secondary lymphoedemas ............................... 36 3 2.5.6. Summary .......................................................................................... 38 2.6 Complex Decongestive Therapy .............................................................. 38 2.6.1 Introduction ........................................................................................ 38 2.6.2 Manual lymphatic drainage ................................................................ 39 2.6.3 Compression Bandaging and Hosiery ............................................... 41 2.6.4 Skin care and Exercise ...................................................................... 44 2.6.5 Complex Decongestive Therapy ....................................................... 46 2.6.6 Summary ........................................................................................... 48 2.7 Impact of lymphoedema on health and social gain .................................. 48 2.7.1 Introduction ........................................................................................ 48 2.7.2 Economic impact of lymphoedema on service provision ................... 49 2.7.3 The economic impact of lymphoedema on the patient ...................... 50 2.8 Lymphoedema and Quality of Life ........................................................... 52 2.8.1 Summary ........................................................................................... 55 2.9 Self-management of Lymphoedema ........................................................ 55 2.9.1 Summary ........................................................................................... 59 Chapter 3 Methodology and Methods ............................................................... 60 3.1 Introduction .............................................................................................. 60 3.2 Research Aims and Objectives ................................................................ 60 3.3 Justification for choice of methodology .................................................... 61 3.4 Mixed Methods Research ........................................................................ 63 3.5 Definitions of Mixed Methods Research .................................................. 64 3.6 Classification of Mixed Method Designs .................................................. 65 3.7 Explanatory Sequential Design ................................................................ 65 3.8 Philosophy underpinning Research Methodologies ................................. 67 3.9 Pragmatism and Mixed Methods Research ............................................. 68 3.10 Methodology .......................................................................................... 69 3.11 Sample .................................................................................................. 73 3.12 Study subjects and the setting ............................................................... 76 3.13 Data Collection – Part 1. Quantitative Phase ......................................... 79 3.14 Data Collection – Part 2 Qualitative Phase ............................................ 83 3.15 Data Analysis – Part1 Quantitative ........................................................ 87 3.16 Data Analysis – Part 2 Qualitative ......................................................... 88 3.17 Pilot Study ............................................................................................. 90 4 3.17.1 Data Collection Part 1 Quantitative.................................................. 90 3.17.2 Data Collection Part 2 Qualitative .................................................... 91 3.17.3 Data Analysis Part 1 Quantitative .................................................... 92 3.17.4 Data Analysis Part 2 Qualitative ...................................................... 92 3.18 Reliability and Validity ............................................................................ 93 3.18.1 Reliability and validity in Mixed Methods Research ......................... 93 3.18.2 Veracity ........................................................................................... 93 3.18.3 Consistency ..................................................................................... 94 3.18.4 Applicability ..................................................................................... 95 3.18.5 Neutrality ......................................................................................... 96 3.19 Ethical Considerations ........................................................................... 96 3.19.1 Risks ................................................................................................ 98 3.19.2 Data Protection ................................................................................ 98 3.20 Summary ..............................................................................................