Exploring how practising mindfulness affects people's experiences of living with a long-term

302 Pages·2014·2.92 MB·English

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 Getting a new perspective: a changed relationship to my experience .............131
7.3 Feeling equipped to cope: having more resources, confidence and control ......145
7.4 Doing life differently: finding my way with my illness, with mindfulness...........153
7.4a Finding my way with mindfulness .......................................................................154
7.4b Finding my way with my illness ...........................................................................171
7.5 Seeing a change...................................................................................................188
7.6 Chapter summary and connecting the themes...................................................204
Chapter 8 Trainers’ focus group findings................................................................... 208
8.1 Introduction.........................................................................................................208
8.2 Getting a new perspective: a changed relationship to my experience...............208
8.3 Feeling equipped to cope: having more resources, confidence and control ......212
8.4 Doing life differently: finding my way with my illness, with mindfulness...........213
8.4a Finding my way with mindfulness .......................................................................213
8.4b Finding my way with my illness ...........................................................................220
8.5 Seeing a change...................................................................................................221
8.6 Summary of chapter and developing the themes...............................................222
Chapter 9 Reflexivity................................................................................................ 224
9.1 Researcher’s position and experience.................................................................224
9.2 Reflections on my interaction with the research ................................................227
9.3 Conclusion ...........................................................................................................232
Chapter 10 Discussion and conclusions..................................................................... 233
10.1 Introduction and chapter overview.....................................................................233
10.2 Discussion of thesis findings................................................................................233
10.3 Reflections and implications................................................................................254
10.4 Conclusion ...........................................................................................................261
Bibliography .......................................................................................................... 263
Appendices
Appendix A: Search strategies and results for overview.................................................275
Appendix B: Recruitment mailing for Breathworks graduates........................................277
Appendix C: Additional targeted recruitment information for second phase mailing ...283
Appendix D: Socio-demographic data collection form....................................................284
Appendix E: Consent form...............................................................................................285
Appendix F: First interview schedule...............................................................................286
Appendix G: Diary............................................................................................................288
Appendix H: Second interview questions........................................................................292
Appendix I: First draft of mindfulness model ..................................................................294
Appendix J: Graduates’ focus group confirmation details ..............................................296
Appendix K: Graduates’ focus group question schedule.................................................298
Appendix L: Trainers’ focus group question schedule.....................................................300
Appendix M: Mind map of first interview data...............................................................302
- 7 -
List of Figures
Fig 2.1 Mindfulness interventions and their underpinnings ..................................................... 24
Fig 3.1 Flow chart for inclusion of studies in systematic review............................................... 31
Fig 3.2 Characteristics of included reviews (by intervention)................................................... 33
Fig 3.3 Quality rating for included reviews ............................................................................... 39
Fig 3.4 Flow diagram for qualitative research review............................................................... 48
Fig 3.5 Characteristics of additional included qualitative studies............................................. 55
Fig 3.6 Quality rating for additional included qualitative studies ............................................. 56
Fig 5.1 Recruitment and data collection timeline ..................................................................... 86
Fig 5.2 Extract from interview field notes/reflections .............................................................. 95
Fig 5.3 Reflections on graduates' focus group ........................................................................ 100
Fig 5.4 Mapping of a section of coding ................................................................................... 103
Fig 5.5 Extract from first interview, showing coding............................................................... 106
Fig 5.6 Section of coding re 'identity' ...................................................................................... 106
Fig 5.7 Location of 'identity' theme within coding.................................................................. 107
Fig 5.8 Memo exploring coding structure ............................................................................... 107
Fig 5.9 Memo discussing refinement of coding structure....................................................... 108
Fig 5.10 Initial reflections on journey metaphor ...................................................................... 109
Fig 5.11 Extract from memo ‘Journey, migration image’ ......................................................... 110
Fig 5.12 Memo extract discussing restructuring coding around journey metaphor ................ 110
Fig 5.13 Early model of key themes and relationships ............................................................. 111
Fig 5.14 Extract from coding frame........................................................................................... 112
Fig 5.15 Revised model of key themes and relationships......................................................... 113
Fig 5.16 Coding frame extract showing revision from trainers’ focus group analysis .............. 114
Fig 5.17 Extract from 'Starting where you are’ memo.............................................................. 115
Fig 6.1 Sampling frame and respondent numbers.................................................................. 117
Fig 6.2 Flow of participants through the study ....................................................................... 118
Fig 6.3 Interview participants’ health conditions, age and involvement in interviews .......... 120
Fig 6.4 Interview participants' demographic characteristics ................................................. 121
Fig 6.5 Interview participants’ course attendance information.............................................. 122
Fig 6.6 Graduates' focus group participant characteristics..................................................... 123
Fig 6.7 Trainers' focus group participant characteristics ........................................................ 124
Fig 7.1 Relationships between key themes and core process ................................................ 126
Fig 7.2 Themes, categories and sub-categories from the analysis.......................................... 128
Fig 7.3 Getting a new perspective: categories and sub-categories......................................... 131
Fig 7.4 Feeling equipped to cope: categories and sub-categories.......................................... 146
Fig 7.5 Finding my way with mindfulness: categories and sub-categories ............................. 154
Fig 7.6 Finding my way with my illness: categories and sub-categories................................. 171
Fig 7.7 Extract from ‘Starting where you are’ memo.............................................................. 172
Fig 7.8 Seeing a change: categories and sub-categories......................................................... 188
Fig 7.9 Relationships between key themes and core process ................................................ 205
Fig 7.10 Extract from ‘Starting where you are’ memo.............................................................. 206
Fig 8.1 Additions to and confirmation of the analysis from trainers' focus group ................. 209
Fig 10.1 Model of the mindfulness experience from the qualitative analysis.......................... 237
Fig 10.2 Model of cycles of awareness and action ................................................................... 241
Fig 10.3 Getting started on the cycle........................................................................................ 241
- 8 -
Glossary
ACT: Acceptance and Commitment Therapy – a mindfulness-based psychological
intervention which does not include meditation as a core element. Further described in
2.3.4.
DBT: Dialectical Behaviour Therapy – a mindfulness-based psychological intervention
which does not include meditation as a core element. Further described in 2.3.4.
GT: Grounded Theory – the qualitative methodology used in this research. See 4.4.2.
LTC: Long-term condition – defined in 2.2.1.
MBI: Mindfulness-based intervention – one of a range of interventions which base their
approach on mindfulness. To be distinguished from MMBI (see below).
MBCT: Mindfulness-Based Cognitive Therapy – an intervention developed from MBSR (see
below), incorporating elements of cognitive behavioural therapy. Further described in
2.3.4.
MBSR: Mindfulness-Based Stress Reduction – the first widely-used, standardised secular
mindfulness intervention, developed by Jon Kabat-Zinn. Further described in 2.3.4.
MMBI: Mindfulness meditation-based intervention – a sub-group of MBIs which give a
central role to meditation in the teaching of mindfulness. Discussed in 3.3.1.
TAU: Treatment as usual – a control group in a study receiving what is considered to be
standard care for their condition i.e. not the intervention being researched.
TBC: Triratna Buddhist Community – the Buddhist organisation with which Breathworks
has close links. See 5.2.1 for further information.
- 9 -
Chapter 1
Introduction
This study identifies how practising mindfulness affected the experiences of a group of
people with a range of long-term physical and mental health problems who had attended
mindfulness training between six months and nine years previously. The study particularly
highlights the longer-term experience of mindfulness, identifying how people integrated it
into their lives, and how this had in many cases affected both their thinking and behaviour
in relation to their illness and lives in general.
This chapter begins by identifying the context in which the study is set, and then outlines
its specific aims and intended contribution to knowledge and practice. A brief overview of
the thesis structure and content is then provided, outlining how the research question was
explored and what was discovered. The final section contains a brief discussion of the
writing style used in this thesis.
1.1 Study rationale and aims
The study is located at the point where two growing strands of interest converge:
providing effective care and support to people living with long-term conditions (LTCs), and
identifying and understanding the effects of mindfulness-based interventions.
There is an increasing awareness of the need to find new ways to support people living
with LTCs, both to enable them to have a better quality of life and to manage the demands
on health services resources which their conditions present. Self-care is increasingly being
recognised as a key element within this process, both for the benefits it may bring to
people’s health and wellbeing and the potential cost savings it may offer.
In parallel with this strand is a growing interest in the ways that mindfulness interventions,
which first came to prominence in the 1980s, can improve a wide range of outcomes for
people experiencing various challenges, including long term illness. There is increasing
evidence that mindfulness provides a means for people to cope better with these
challenges and to see improvements, particularly in their psychological health. The
structure of these interventions also makes them a potentially valuable approach to self-
management, as their intention is to teach skills and attitudes which people are
encouraged to take and integrate into their lives.
It is in this context that the research is set, exploring how practising mindfulness affected
people’s experience of living with a LTC, including both changes in attitudes and behaviour
in relation to their illness, of which their self-care formed a significant dimension.
Reviewing the rapidly growing literature, it became apparent there was an absence of
knowledge of the long-term of experiences of practising mindfulness, and of how people
with LTC integrated mindfulness into their everyday lives. There was also a lack of
understanding of the variation in people’s experiences, for example in relation to their
- 10 -
condition or patterns of mindfulness practice. These areas needed to be better
understood in order to clarify mindfulness’s potential to benefit people living with LTCs.
In the light of these considerations, the following research question was developed:
How does practising mindfulness affect people’s experiences of living with a long-
term condition?
A number of subsidiary questions were also identified:
 How do people understand and describe their experiences (positive and negative)
of practising mindfulness in relation to living with a LTC?
 In what ways and for what reasons do people with LTCs integrate mindfulness into
their lives?
 How do people with LTCs perceive that practising mindfulness affects the way they
relate to and manage their condition?
 In what ways are people’s experiences similar, and how do they differ?
 Does the variation seem to relate to any identifiable characteristics e.g. condition,
amount (e.g. frequency, length) of mindfulness practice, personal circumstances?
The research was designed to address these key questions, and its different elements are
outlined below. Recognising the extensive existing literature regarding the chronic illness
experience, and its limited discussion within the mindfulness literature, a further goal of
this PhD was to explore and embed its findings in this context. The intention was to
identify how experiences of mindfulness practice informed, and were informed by, existing
understandings of how people learn to live with a LTC. The PhD therefore sought to clarify
the role that mindfulness may play in enabling people to live well with long-term health
problems. It also aimed to identify the specific changes in thinking and behaviour which
both contribute to and result from this. Through this process, it was hoped that the
research would provide clearer information and insight into the benefits of practising
mindfulness, and the circumstances in which those benefits are likely to be obtained.
1.2 Thesis overview
Following this introduction, it contains nine further chapters as follows:
Chapters 2 and 3 review the existing literature and provide a context and rationale for the
research. Chapter 2 offers an overview of definitions and key issues in relation to LTC,
including current policy initiatives. It also explores the varying understandings of
mindfulness within both Buddhism, where it originates, and western psychology, where
the majority of current research is being undertaken. An overview of mindfulness
interventions is also provided. Chapter 3 reviews the empirical research into mindfulness
meditation based interventions to establish what is known about their effectiveness and
how they are experienced by participants. Two different approaches are used: an
overview of existing systematic reviews based on the Cochrane overview process; and a
review of the qualitative literature, including a meta-ethnography of participants’
experiences. The chapter concludes by summarising key findings and gaps in the research,
and identifying the research question for the study.