SELF-MANAGEMENT STRATEGIES of CANCER SURVIVORS: WHO DOES WHAT and WHY? a MIXED METHODS STUDY By
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SELF-MANAGEMENT STRATEGIES OF CANCER SURVIVORS: WHO DOES WHAT AND WHY? A MIXED METHODS STUDY by CATHERINE SHNEERSON A thesis submitted to the University of Birmingham for the degree of DOCTOR OF PHILOSOPHY School of Health and Population Sciences College of Medical and Dental Sciences University of Birmingham 2014 University of Birmingham Research Archive e-theses repository This unpublished thesis/dissertation is copyright of the author and/or third parties. The intellectual property rights of the author or third parties in respect of this work are as defined by The Copyright Designs and Patents Act 1988 or as modified by any successor legislation. Any use made of information contained in this thesis/dissertation must be in accordance with that legislation and must be properly acknowledged. Further distribution or reproduction in any format is prohibited without the permission of the copyright holder. Abstract This thesis examined self-management (SM) strategies of cancer survivors from pre- diagnosis, through treatment and into survivorship. A healthcare definition of SM as a lifestyle modifying behaviour potentially impacting on cancer survivors’ health, wellbeing and quality of life (QoL) was given. Due to a lack of existing literature, a systematic review and meta-analyses investigating whether complementary and alternative medicine (CAM) improves cancer survivors’ QoL was undertaken, finding moderate to poor quality evidence of this. A mixed methods study explored SM patterns over time. The questionnaire study examined the prevalence and distribution of SM patterns, finding SM uptake was highest in survivorship. Subgroup analyses found SM uptake was highest in breast cancer and chemotherapy respondents, whilst correlation analysis revealed significant associations between SM uptake and both QoL and internal health locus of control (HLC), but none between SM uptake and work ability. The interview study explored how and why cancer survivors made decisions about incorporating SM practices into their daily lives. The concept of normality in survivorship emerged, with cancer survivors assembling a new health-related normality to adapt to their new lives post-cancer. A theoretical framework proposed that cancer survivors use SM as a supportive mechanism to attain their new health-related normality. Acknowledgements There are many people I would like to thank for making the completion of this research possible. To start, I would like to thank my two primary supervisors, Dr Nicola Gale and Dr Sheila Greenfield, for helping to guide me through this research process and for providing me with ongoing support, expert guidance, encouragement and positivity. I have been privileged to have you both as supervisors and you have helped to make this PhD process an altogether enjoyable, educational and rewarding experience. I would also like to thank my supervisor Dr Taina Taskila who has provided continuous input and support, from near and far, especially regarding the quantitative aspects of the study. Thanks also to my supervisor Roger Holder for his statistical support and my supervisor Inigo Tolosa for his clinical perspective, as well as for providing links to healthcare staff at University Hospitals Birmingham, without which the conduct of this study would not have been possible. I am grateful to the National Institute for Health Research for funding this PhD Studentship. I would like to extend my thanks to Yen-Fu Chen for his help and input with conducting the systematic review and preparing the subsequent manuscript for publication. Also, Sarah Damery, for providing additional statistical support and for reviewing draft versions of this thesis; Sabi Redwood for her help and support in our MedSoc sessions and Anu Krishnu, for data checking some of my questionnaire data. Thanks also to the patient representatives who kindly took the time to provide feedback on the design of some of the study tools used in both the quantitative and qualitative phases of the study. To my PhD allies, Gemma Taylor and Claire Madigan, for their shared knowledge, humour and understanding of PhD life. We have shared the experience as a team and it has been brilliant having you both alongside throughout the process. To my Mum and Dad, for supporting me in my choices and for their constant backing, love and encouragement. To my brother, Rob, for his Harborne presence (under both my roof and his) and to the rest of my family and friends, for keeping me on track and supporting me throughout this PhD. Finally, I would like to thank all of the study respondents who made this research possible. Contributorship Statement All the Chapters in this thesis are entirely the product of my own work, with help and guidance from my supervisors Dr Nicola Gale, Prof. Sheila Greenfield, Dr Taina Taskila, Dr Inigo Tolosa and Mr Roger Holder. The systematic review undertaken in Chapter 3 was undertaken primarily by myself, with contributions to the conduct of the review and manuscript being undertaken by Dr Yen-Fu Chen, Research Fellow in Systematic Review and Quality Improvement (Primary Care Clinical Sciences, University of Birmingham), as well as from three of my supervisors, Dr Taina Taskila, Dr Nicola Gale and Prof. Sheila Greenfield. The mixed methods study was designed primarily by myself with advice from two of my supervisors, Dr Nicola Gale and Dr Taina Taskila. The questionnaire data reported on in Chapters 4 and 5 were data checked by Anu Krishna. Table of Contents CHAPTER 1. INTRODUCTION.........................................................................................p1 1.1 Introduction to Chapter................................................................................................p2 1.2 Thesis Aims and Objectives.........................................................................................p3 1.3 Rationale for Using Mixed Methods............................................................................p4 1.4 Practice and Stakeholder Engagement and User Involvement Throughout the Research Process...............................................................................................................p13 1.5 Thesis Structure..........................................................................................................p16 1.6 Conclusion..................................................................................................................p19 1.7 Chapter Summary.......................................................................................................p20 CHAPTER 2. BACKGROUND TO THE STUDY……...………………………………p21 2.1 Introduction to Chapter.........................................................……....……………….p22 2.2 SM and Cancer Survivorship.....................................................................................p22 2.3 Integrating SM Practices with Biomedicine...............................................................p27 2.4 Defining SM...............................................................................................................p34 2.5 The Social Context of SM and Chronic Illness..........................................................p40 2.6 SM in a Policy Context..............................................................................................p42 2.7 Categories of SM........................................................................................................p44 2.8 Conclusion..................................................................................................................p44 2.9 Chapter Summary.......................................................................................................p45 CHAPTER 3. THE EFFECT OF COMPLEMENTARY AND ALTERNATIVE MEDICINE ON THE QUALITY OF LIFE OF CANCER SURVIVORS: A SYSTEMATIC REVIEW AND META-ANALYSES…………………………………..p47 3.1 Introduction to Chapter................................. ................................................p48 3.2 Background....................................................................................................p49 3.3 Methods.........................................................................................................p51 3.3.1 Criteria for Considering Studies for this Review...........................................p51 3.3.2 Search Methods for Identification of Studies.................................................p53 3.3.3 Selection of Studies........................................................................................p54 3.3.4 Data Extraction and Assessment of Risk of Bias...........................................p56 3.3.5 Missing Data..................................................................................................p56 3.3.6 Data Synthesis................................................................................................p56 3.4 Results............................................................................................................p57 3.4.1 Characteristics of Included Studies................................................................p57 3.4.2 Risk of Bias in Included Studies....................................................................p58 3.4.3 Description of Interventions and Controls.....................................................p58 3.4.4 Effectiveness of CAM Interventions of QoL.................................................p64 3.5 Discussion......................................................................................................p67 3.5.1 Summary of Main