Psychosocial Interventions to Support Breast Cancer Patients Affected by Treatment-Related Hair Loss Melissa Pilkington A thesis submitted in partial fulfilment of the requirements of the University of the West of England, Bristol for the degree of Doctor of Philosophy Faculty of Health and Applied Sciences University of the West of England, Bristol January, 2017 Word count: 77, 581 Table of Contents Table of Contents ........................................................................................................ i List of Figures ............................................................................................................ ix List of Tables .............................................................................................................. x List of Appendices ..................................................................................................... xi Acknowledgements ................................................................................................. xiii Abstract ....................................................................................................................... 1 Chapter One: Introduction to the Research Area .................................................. 3 1.1 Introduction ................................................................................................ 3 1.2 Breast cancer .............................................................................................. 4 1.3 Breast cancer treatment .............................................................................. 4 1.4 Chemotherapy-induced alopecia ................................................................ 6 1.5 Techniques to prevent or reduce hair loss .................................................. 7 1.6 Hair re-growth ............................................................................................ 9 1.7 Social significance of hair .......................................................................... 9 1.8 Stigma of hair loss ................................................................................... 11 1.9 The use of headwear ................................................................................ 12 1.10 Impact of chemotherapy-induced alopecia on body image and distress 13 1.11 Adjustment to treatment-related hair loss .............................................. 14 1.12 Current policy around provision of care for breast cancer patients ....... 15 1.13 Support for cancer patients affected by treatment-related hair loss. ...... 16 1.13.1 Structured psychosocial interventions .................................... 17 1.13.2 Social support .......................................................................... 18 1.13.3 Role of specialist breast care nurses ....................................... 19 1.13.4 Information provision ............................................................. 19 1.13.5 Online information and support groups .................................. 20 1.13.6 Camouflage-based interventions ............................................. 21 1.13.7 HeadStrong ............................................................................. 22 1.13.8 Look Good Feel Better ............................................................ 22 1.14 The theoretical framework for this research .......................................... 24 1.15 The link between the ARC framework and the hair loss literature ........ 27 1.16 Research Questions ................................................................................ 28 1.17 Conclusion ............................................................................................. 31 i 1.18 Summary of the key points in this chapter ............................................. 31 1.19 The next stage of the research ................................................................ 32 Stage One: Review Chapter Two: Supporting Cancer Patients Affected by Alopecia: A Systematic Review of Psychosocial Interventions to Improve Psychological Outcomes for Individuals with Hair Loss ...................................................................................... 33 2.1 Introduction .............................................................................................. 33 2.2 Aim .......................................................................................................... 33 2.2.1 Identification of the research question ...................................... 34 2.3 Method ..................................................................................................... 34 2.3.1 Rationale for inclusion/exclusion criteria ................................. 34 2.3.2 Summary of the inclusion criteria ............................................. 35 2.3.3 Exclusion criteria ...................................................................... 35 2.3.4 Search protocol ......................................................................... 36 2.3.5 Assessment of the scientific quality of the evidence ................ 37 2.4 Results ...................................................................................................... 38 2.4.1 Systematic literature review ...................................................... 39 2.4.2 Types of interventions ............................................................... 52 2.4.3 Scientific quality ....................................................................... 57 2.4.4 Participants ................................................................................ 58 2.4.5 Design ....................................................................................... 59 2.4.6 Outcome measures .................................................................... 60 2.4.7 Methods of data collection and analysis ................................... 60 2.4.8 Conclusions and considerations of adverse effects ................... 61 2.4.9 Generalisability of findings (external validity) ......................... 61 2.4.10 Which interventions work, how well, for whom and in what setting? ................................................................................... 62 2.5 Discussion ................................................................................................ 70 2.5.1 Summary of main results .......................................................... 70 2.5.2 Internal validity ......................................................................... 70 2.5.3 External validity ........................................................................ 71 2.6 Conclusions .............................................................................................. 72 2.7 Implications for future provision of care ................................................. 72 2.8 Implications for future research ............................................................... 72 ii 2.9 Summary of the key points in this chapter ............................................... 74 2.10 The next stage of the research ................................................................ 74 Chapter Three: Methodology ................................................................................. 75 3.1 Introduction .............................................................................................. 75 3.1.1 The use of the MRC framework for complex interventions in this thesis ................................................................................... 75 3.2 Epistemology and choice of methods in this thesis ................................. 79 3.3‘Paradigm war’ .......................................................................................... 79 3.4 Mixed methods ......................................................................................... 81 3.5 Designs for mixed methods research ....................................................... 83 3.6 Recruitment challenges in psycho-oncology research ............................. 89 3.6.1 Barriers to recruitment .............................................................. 89 3.6.2 Specific challenges in Randomised Controlled Trials (RCTs). 90 3.6.3 Influence of healthcare professionals on recruitment ............... 91 3.6.4 Challenges of recruitment into psychosocial intervention studies ....................................................................................... 92 3.6.4.1 Attrition ...................................................................... 94 3.7 Methods to enhance recruitment and reduce attrition .............................. 94 3.7.1 Patient and public involvement (PPI) ....................................... 96 3.7.2 Patient and public involvement (PPI) in this thesis .................. 98 3.8 Summary ................................................................................................ 100 3.9 Summary of the key points in this chapter ............................................. 101 3.10 The next stage of the research .............................................................. 101 Stage Two: Current Interventions Chapter Four: A Camouflage Based Support Service ....................................... 102 4.1 Background ............................................................................................ 102 4.2 Aim ........................................................................................................ 103 4.3 Method ................................................................................................... 103 4.3.1 PPI involvement .....................................................................