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Exploring How Practising Mindfulness Affects People's Experiences Of Exploring how practising mindfulness affects people’s experiences of living with a long-term condition Jacqueline Ann Long Submitted in accordance with the requirements for the degree of Doctor of Philosophy The University of Leeds School of Healthcare June 2014 - 2 - The candidate confirms that the work submitted is her own and that appropriate credit has been given where reference has been made to the work of others. This copy has been supplied on the understanding that it is copyright material and that no quotation from the thesis may be published without proper acknowledgement. © 2014 The University of Leeds and Jacqueline Ann Long The right of Jacqueline Ann Long to be identified as Author of this work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988. - 3 - Acknowledgements I am grateful to everyone who has made it possible for me to reach this stage on the journey. It has been quite an adventure! I’d like to thank Vidyamala and everyone at Breathworks for their support and co- operation with the research, which made the recruitment process run very smoothly. The feedback from participants is testament to the value of the work they are doing. My supervisory team has changed over the study period, and each person has brought a distinctive and valuable contribution. I am very grateful, in date order, to Professors Kate Thomas, Felicity Astin, Michelle Briggs and Andrew Long for their support, guidance, challenge and encouragement. This research would not have been possible without the participants, and so special thanks goes to all of them. It was a privilege to meet them, and, quite apart from offering valuable data, they shared an enormous amount of wisdom, insight and kindness which helped me through the challenges I was facing, and which continues to inspire me. I am also extremely grateful to my friends and family for their support and encouragement, and for unfailingly believing in me at the many times when I was less convinced. Particular thanks to Emily and Hina for knowing what it was like and helping remind me I could trust myself. And most of all, a huge thank you to my partner Philippa, for listening to every twist and turn of the journey, offering wise advice and valuable reality checks and, when things were at their most difficult, making it possible for me to carry on at all. For my Dad – he would have been so proud. - 4 - Abstract There is increasing evidence that mindfulness meditation-based interventions (MMBIs) benefit people with many long-term conditions (LTCs), particularly in terms of psychological wellbeing. Most evidence however relates to short-term outcomes, and limited information exists about how people integrate mindfulness into life over the longer-term, and how this affects their experience. This PhD aimed to address these limitations through the research question: How does practising mindfulness affect people’s experiences of living with a LTC? A qualitative approach was adopted, using grounded theory to explore the processes of change. Using two-stage interviews, diaries and focus groups, data were gathered from 34 participants and seven trainers of Breathworks’ mindfulness course. Almost all study participants reported a diversity of physical and/or mental health problems, many with multi-morbidity. Fieldwork was supplemented by a subsequent Cochrane-informed overview of systematic reviews and a critical review of qualitative studies of MMBIs. Participants’ experiences were predominantly strongly positive, identifying significant changes in thinking and behaviour. They described in detail how mindfulness had become part of their lives, enabling them to be more effective and responsive in their self-care. Analysis identified a core process and metaphor of ‘Starting where I am’ on an unwanted journey to an unfamiliar place. This highlighted how people become more aware and accepting of their condition and its impact, but able to see it in a wider context, and thus to take appropriate action. The process was represented in five interrelated themes: Getting a new perspective; Feeling equipped to cope; Doing life differently; Seeing a change; and Finding it difficult. Through exploration of existing chronic illness literature, the study suggests that mindfulness is a powerful facilitator of transition, through which people come to terms with challenging life events. Transition is associated with improved, self-directed self- management, which is significant to both people with LTC and healthcare providers. - 5 - Table of Contents Acknowledgements .............................................................................................................3 Abstract................................................................................................................................4 Table of Contents.................................................................................................................5 List of Figures.......................................................................................................................7 Glossary ...............................................................................................................................8 Chapter 1 Introduction.................................................................................................. 9 1.1 Study rationale and aims.........................................................................................9 1.2 Thesis overview .................................................................................................... 10 1.3 Use of first person writing style............................................................................ 11 Chapter 2 Literature Review: Context......................................................................... 13 2.1 Introduction.......................................................................................................... 13 2.2 Long-term conditions: the context....................................................................... 13 2.3 Mindfulness: the context...................................................................................... 17 2.4 Chapter summary ................................................................................................. 26 Chapter 3 Literature Review: Empirical research......................................................... 27 3.1 Introduction.......................................................................................................... 27 3.2 Systematic review of reviews ............................................................................... 28 3.3 Review of qualitative research ............................................................................. 47 3.4 Chapter summary and research question ............................................................ 62 Chapter 4 Methodology............................................................................................. 64 4.1 Introduction.......................................................................................................... 64 4.2 Defining methodology and its role ....................................................................... 64 4.3 Philosophical perspective ..................................................................................... 65 4.4 Selecting a qualitative methodology .................................................................... 71 4.5 Ethical considerations........................................................................................... 77 4.6 Quality and credibility........................................................................................... 78 4.7 Chapter summary ................................................................................................. 80 Chapter 5 Methods.................................................................................................... 81 5.1 Introduction and chapter overview...................................................................... 81 5.2 Recruitment.......................................................................................................... 82 5.3 Sampling strategy, sample size and saturation .................................................... 87 5.4 Data collection...................................................................................................... 88 5.5 Ensuring ethical research practice........................................................................ 96 5.6 From data to concepts: the process of data analysis ........................................... 99 5.7 Chapter summary ............................................................................................... 116 Chapter 6 Participant numbers and characteristics ....................................................117 6.1 Flow of participants ............................................................................................ 117 6.2 Interview participants......................................................................................... 119 6.3 Focus group participants .................................................................................... 123 6.4 Chapter summary............................................................................................... 125 - 6 - Chapter 7 Interview and graduates’ focus group findings.......................................... 126 7.1 Introduction.........................................................................................................126 7.2
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