Developing consensus on what constitutes ‘success’ following upper limb loss rehabilitation A thesis presented to Dublin City University for the Degree of Doctor of Philosophy By Sinéad Eilís Ní Mhurchadha B.A., MSc. School of Nursing, Dublin City University Supervisors: Dr. Pamela Gallagher, Dublin City University Professor Malcolm MacLachlan, University of Dublin, Trinity College. March 2010 I hereby certify that this material, which I now submit for assessment on the programme of study leading to the award of Doctor of Philosophy is entirely my own work, that I have exercised reasonable care to ensure that the work is original, and does not to the best of my knowledge breach any law of copyright, and has not been taken from the work of others save and to the extent that such work has been cited and acknowledged within the text of my work. Signed: ____________ (Candidate) ID No.: ___________ Date: _______ ii Acknowledgements I would like to express my deep and sincere gratitude to my supervisor, Dr. Pamela Gallagher. For her effective personal guidance, wisdom, understanding, encouragement and for giving masses of her time listening patiently to any ‘mini Ph.D crisis’ I underwent, and gently and effectively guiding me in the right direction. For everything in the last three years, my heartfelt thanks. Thank you to my co- supervisor Professor Malcolm Mac Lachlan, for his support and wealth of knowledge. A special thank you to Professor Stephen Wegener who has been an encyclopaedia of wisdom through several stages of my research and has given valued support to me over the past three years. I also wish to extend my thanks to Dr. Susan Hofkamp for her help and guidance during the Repertory Grid study. Thanks also to Dr. Deirdre Desmond for all her invaluable advice at various intervals throughout my PhD. I am very grateful to Dr. Brian O’Neill, (WESTMARC) for co-ordinating the focus groups and interviews for me and for all the advice he gave to me on varying aspects of my research. Thank you also to Dr. Nicola Ryall (National Rehabilitation Hospital, Dun Laoghaire) and Dave Allen (IDS, Cappagh Orthopaedic Hospital) and Amputee Disability Federation of Ireland for helping to recruit patients for this study. The valuable contribution of the patients and Rehabilitation Professionals who participated in several stages of this research cannot be over-emphasised. I am very grateful to them for giving their time to this study and for the constructive and dedicated way each participant approached the research. I hope that this research may indirectly be of some benefit to all involved. I would also like to acknowledge all the postgraduate students in the School of Nursing for their constant encouragement. A special thank you to my fellow ‘psychoprosthetics’ researchers, Liz Schaffalitzky and Laura Coffey for their support and stimulation along the way. I am most grateful to the Health Research Board, Ireland for funding this research. Thank you must go to my family, especially Aoibhinn and Eoghan, who have always supported me and my decision to continue education and my Ph.D endeavour. I am privileged to have two wonderful parents, Joan Colbert and Donal Murphy who created a loving and stimulating environment for me to grow up. They valued education and provided every opportunity for me to succeed in life and they have continued to support me both emotionally and practically into my adult life, for which I am sincerely grateful. I dedicate this thesis to them, with all my love. iii Table of Contents Declaration……………………………………………………………………………ii Acknowledgements…………………………………………………………………..iii Table of contents……………………………………………………………………..iv List of tables………………………………………………………………………….vi List of figures………………………………………………………………………...vii List of Appendices…………………………………………………………………...viii Abbreviation List……………………………………………………………………..x Abstract………………………………………………………………………………xi Summary of thesis…….……………………………………………………………...xii ________________________________________________________________________ Chapter 1 Literature Review…………………………………………..1 1.1 Literature review overview 3 1.2 ULA epidemiology 5 1.3 Outcomes and associated variables 10 1.4 Outcomes Assessment 65 1.5 Lessons from Disability Studies 68 1.6 Research Statement 72 ___________________________________________________________________ Chapter 2 Thesis Methodology……………………………………….74 2.1 Mixed method design 76 2.2 Pragmatism 77 2.3 Present study design 78 2.4 Thematic analysis 82 2.5 Method of analysis 84 2.6 Reflexivity 86 2.7 Summary of methodology 87 ________________________________________________________________________ Chapter 3 Repertory Grid Interviews: Exploring perceptions of prosthetic devices……………..………………………………..……88 3.1 Introduction 90 3.2 Method 96 3.3 Results 101 3.4 Discussion 117 ________________________________________________________________________ iv Chapter 4 Qualitative Studies: Identifying factors of importance to consider in ULA rehabilitation …………………………………..123 4.1 Introduction to qualitative studies 1 & 2 126 4.2 Method for study 1 & 2 135 4.3 Results for study 1 & 2 142 4.4 Discussion of Studies 1 & 2 199 ________________________________________________________________________ Chapter 5 Delphi study: Reaching consensus on ‘success’ following ULA and factors of importance to consider in rehabilitation……...222 5.1 Introduction 225 5.2 Method 236 5.3 Results 245 5.4 Discussion 269 ________________________________________________________________________ Chapter 6 Thesis Conclusion ... ……………………………………..283 6.1 Review of the rationale for conducting this research 285 6.2 Summary of findings 287 6.3 Implications of research 292 6.4 Concluding comments 297 References…………………………………………………………………………..298 Appendices………………………………………………………………………….332 Research Dissemination……………………………………………………………476 v List of Tables Table 1.1 Key studies that measure prosthesis use that are discussed in this review .................................................................................................. .40 Table 1.2 Overview of variables assessed by main studies in relation to prosthesis use ............................................................................................ 46 Table 3.1 List of elements for Repertory Grid........................................................... 98 Table 3.2 Randomly generated sets of elements…………………………………….98 Table 3.3 Jennifer’s Grid............................................................................................ 102 Table 3.4 Declan's Grid.............................................................................................. 109 Table 4.1 Demographic information for individuals with ULA ................................ 139 Table 5.1 Demographic information for all participants across 3 rounds.................. 245 Table 5.2 Demographic information for all RP’s across rounds................................ 246 Table 5.3 Years experience working with people with ULA..................................... 247 Table 5.4 Demographic information for all individuals with ULA across rounds .... 248 Table 5.5 Further demographic information regarding individuals with ULA.......... 249 Table 5.6 Demographic data for individuals who are RP’s with ULA...................... 250 Table 5.7 Further information regarding individuals who are RP’s with ULA ......... 250 Table 5.8 Analyses of differences between RP’s (Group 1) and those with ULA (Group 2) across rounds............................................................ 254 Table 5.9 Analyses for those who completed/ did not complete round 2 on their round 1 statements/ items ..................................................................................... 255 Table 5.10 Analyses for those who completed/ did not complete round 3 on their round 1 and round 2 statements/ items................................................................. 256 Table 5.11 Means and standard deviations of ‘Prosthesis use’ statements.................. 259 Table 5.12 Means and standard deviations of ‘Activities and Participation’ statements................................................................................................... 261 Table 5.13 Means and standard deviation for ‘Self image’ statements ....................... 262 Table 5.14 Items that should be taken into consideration by RP’s in rehabilitation.... 264 Table 5.15 Section 2 items that were rejected by participants..................................... 266 vi List of Figures Figure 1.1 Levels of upper limb absence from NASD (2009)……………………….…7 Figure 1.2. Cause of limb absence amongst individuals with ULA and lower limb absence from NASD (2009)………………………………8 Figure 2.1 Design of thesis………………………………………………………..……82 Figure 5.1. Overview of Delphi procedure……………………………………………..240 vii List of Appendices Appendix A Exemplar of coded data extract from an interview with a psychologist………………………………………………………….334 Appendix B Information sheet for repertory grid study……………………………336 Appendix C Letter of invitation to participants for repertory grid study…………..341 Appendix D Consent form for repertory grid study………………………………...343 Appendix E Demographic questionnaire for repertory grid study………………….346 Appendix F Interview guide for RP’s qualitative interviews………………………349 Appendix G Email invitation to RP’s for participation in qualitative studies………351 Appendix H Information sheet for RP’s qualitative interviews…………………….353 Appendix I Consent form for RP’s qualitative interviews…………………………359 Appendix J Interview guide for qualitative study with individuals