PATIENT AND PROFESSIONAL PERSPECTIVES ON LIVING WITH CHRONIC OBSTRUCTIVE

284 Pages·2016·2.25 MB·English

PATIENT AND PROFESSIONAL
PERSPECTIVES ON LIVING WITH
CHRONIC OBSTRUCTIVE PULMONARY
DISEASE

Jennifer Ann Watson

A thesis submitted in partial fulfilment of the
requirements of the Manchester Metropolitan
University for the degree of Doctor of Philosophy

Department of Health Professions
Faculty of Health, Psychology and Social Care
Manchester Metropolitan University

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Acknowledgements

My thanks go to my supervisory team; Jois Stansfield, Jenny Caunt and Lucy Webb
for sharing their knowledge, experience and wisdom, and guiding me so expertly
through this endeavour. To Neil Dagnall for his inspiration in my early years at MMU
and to Dan O’Connor for his invaluable assistance in the first, challenging year of my
PhD studies.

Thank you also to my parents, my husband Andrew, and my three children, Timothy,
Fiona and Laurence who have given me their support and encouragement over the
last three years.

I would particularly like to express my thanks to all those who gave their valuable
time so freely to act as participants. Despite individual challenges of ill-health and
busy schedules, each one made a valuable contribution to this research and without
them this study could not have taken place.

Finally, I would like to dedicate this thesis to my Granddaughters, Gretel and Clarice,
in the hope that, at some time in the future, they may each be inspired to follow their
own chosen pathway, wherever it may lead.

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Patient and Professional Perspectives on Living with Chronic Obstructive
Pulmonary Disease
Abstract
The aims of this study were to explore the lived experience of people with COPD and
the views of healthcare professionals involved in the care of patients with COPD. The
research question asked how health providers are meeting the psychosocial needs
of people with COPD. Recent literature suggests that some patients with COPD are
leaving primary care consultations with unmet psychosocial needs and that
healthcare providers report being unwilling to promote behaviour change as they
perceive it could damage their ongoing relationships with their patients. Data were
collected from semi-structured interviews carried out with nine people with COPD
and ten healthcare professionals (HCPs). The interviews were transcribed verbatim
and the data analysed using Attride-Stirling’s (2001) model of thematic network
analysis. Examples of themes deduced from the findings of the COPD group were loss
and lifespan health. Those from the HCP group included attitudes and patient care.
Both groups yielded a global theme of individuality. Findings from the study suggest
that COPD patients are happy with their experience of healthcare although they
valued prompt, accessible care in an emergency more highly than routine review
appointments. They did not indicate that their psychosocial needs were met in
routine consultations although they reported that some of these needs were met
during pulmonary rehabilitation. HCPs perceived that they provided good care but
that there were barriers to introducing psychosocial issues into routine
appointments. In a time of change in patient demographics resulting in an increased
number of older people with long-term conditions, this study adds to the body of
knowledge in this field by exploring the lived experience of both people with COPD
and of HCPs. The global theme of individuality for each group supports the need for
person-centred care in the healthcare system in order to meet individuals’
psychosocial needs. Recommendations include; increased provision of pulmonary
rehabilitation courses and training for HCPs in order for them to be more aware of
the psychosocial needs of patients attending routine appointments.

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Table of Contents

CHAPTER 1 - INTRODUCTION 11

1.1 Background to the study 11
1.1.1 Personal background 12
1.1.2 COPD – the present situation 15

1.2 Definition of chronic obstructive pulmonary disease (COPD) 17
1.2.1 Chronic bronchitis 18
1.2.2 Emphysema 18

1.3 Diagnosis of COPD 19

1.4 Symptoms of COPD 20
1.4.1 Breathlessness (dyspnoea) 21
1.4.2 Cough and sputum production 22
1.4.3 Fatigue 23
1.4.4 Severity measures for COPD 23
1.4.5 Exacerbations 24
1.4.6 Cor pulmonale 25

1.5 Interventions for COPD 26
1.5.1 Smoking cessation 26
1.5.2 Pharmaceutical treatments 27
1.5.3 Pulmonary rehabilitation (PR) 29
1.5.4 Lung surgery 30

1.6 Psychological comorbidities 31
1.6.1 Anxiety and COPD 31
1.6.2 Prescribed treatments for anxiety 33
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1.6.3 Self-help for anxiety 34

1.7 The care of people with COPD – is there a need for change in the 35
healthcare system?
1.7.1 Person-centred care 36

1.8 The lived experience of people with COPD 41

CHAPTER 2 – LITERATURE REVIEW 44

2.1 Introduction to the literature review 44
2.1.1 Literature concerning the accepted and perceived causes of COPD 45
2.1.2 Literature concerning the symptoms of COPD 50
2.1.3 Literature concerning COPD and comorbidities 53
2.1.4 Literature concerning the interaction between physical and 55
psychological symptoms in COPD
2.1.5 Literature around how the healthcare system meets psychosocial 59
needs of COPD patients
2.1.6 Literature concerning locus of control 64
2.1.7 Literature concerning pulmonary rehabilitation (PR) 65
2.1.8 Literature concerning self-management 69
2.1.9 Literature concerning person-centred care 72

2.2 Summary of literature review 78

CHAPTER 3 – METHODOLOGY AND METHOD 79

3.1 Philosophical stance 79
3.2 Methodology 82
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3.3 Choice of method 84
3.4 Participants 88
3.5 Recruitment 88
3.6 Procedure 91
3.7 Analysis 94
3.8 Ethical issues 99
3.9 Summary 100

CHAPTER 4 – RESULTS FOR THE COPD GROUP 101

4.1 Participants’ demographic data (COPD group) 101

4.2 Results for the COPD group 102
4.2.1 Lifespan health 104
4.2.1.1 Childhood illness 104
4.2.1.2 Family respiratory illness 106
4.2.1.3 Exercise 108
4.2.1.4 Smoking 110
4.2.1.5 COPD exacerbations 113
4.2.1.6 Comorbidities 115
4.2.2 Loss 116
4.2.2.1 Loss of physical abilities 116
4.2.2.2 Loss of employment/role/identity 119
4.2.2.3 Loss of independence 120
4.2.2.4 Loss of friends/social life 121
4.2.2.5 Financial loss/gain 123
4.2.3 Experience of the healthcare system 125
4.2.3.1 Experience of primary care 125
4.2.3.2 Experience of secondary care 128
4.2.3.3 Experience of pulmonary rehabilitation 130
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4.2.3.4 Experience of emergency care 131
4.2.4 Locus of control 132
4.2.4.1 Medication use 133
4.2.4.2 Support 136
4.2.4.3 Causes/triggers of COPD 139
4.2.4.4 Progression/adjustment 141
4.2.5 Emotional reactions 144
4.2.5.1 Anxiety and dyspnoea 145
4.2.5.2 Mental health care 146
4.2.6 COPD group global theme of individuality 147

CHAPTER 5 – RESULTS FOR THE HCP GROUP 149

5.1 Participants’ demographic data (HCP group) 149

5.2 Results for the HCP group 150
5.2.1 Working experience 151
5.2.1.1 Professional/training 152
5.2.1.2 Personal experiences 154
5.2.2 Attitudes 156
5.2.2.1 Attitudes towards patients 156
5.2.2.2 Attitudes towards treatment 162
5.2.2.3 Attitudes towards the healthcare system 164
5.2.3 Patient care 167
5.2.3.1 Existing medical care 167
5.2.3.2 Other support (family, friends, support groups) 173
5.2.3.3 Outcomes (patients) 175
5.2.3.4 Outcomes (healthcare service) 179
5.2.3.5 Barriers to care 181
5.2.3.6 Future of care 184
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5.2.4 HCP group global theme of individuality 186

CHAPTER 6 – DISCUSSION: COPD GROUP THEMES 188

6.1 Discussion – lifespan health theme 188
6.2 Discussion – experiences of the healthcare system theme 196
6.3 Discussion – emotional reactions theme 204
6.4 Discussion – loss theme 207
6.5 Discussion – locus of control theme 210
6.6 Summary 213

CHAPTER 7 – DISCUSSION: HCP GROUP THEMES 215

7.1 Discussion – working experience theme 215
7.2 Discussion – attitudes theme 218
7.3 Discussion – patient care theme 224
7.4 Summary 230

CHAPTER 8 – CONCLUSION 232

8.1 Summary of themes 232
8.2 Similarities and mismatches between the data from the COPD group 235
and the HCP group
8.3 The global theme of individuality 237
8.4 Reflexivity 238
8.5 Limitations of the study 242
8.6 Final comments, recommendations & suggestions for future research 243
8.6.1 The role of PR in meeting psychosocial needs 244
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8.6.2 The role of psychological therapy in meeting psychosocial needs 245
8.6.3 Barriers to meeting the psychosocial needs of people with COPD 246
8.6.4 The role of the voluntary sector 247
8.6.5 Conclusions 248
8.6.6 Future research 250

REFERENCES 253

LIST OF APPENDICES
Appendix 1 COPD patient letter of introduction (V2) 276
Appendix 2 HCP letter of introduction (V5) 277
Appendix 3 COPD patient participant information sheet (V8) 278
Appendix 4 HCP participant information sheet (V2) 280
Appendix 5 Consent form (V7) 282
Appendix 6 Interview topic guide (COPD patients) (V7) 283
Appendix 7 Interview topic guide (HCP) (V4) 284

LIST OF FIGURES
Fig. 1.1 Gas exchange in the alveoli of the lungs 22
Fig. 1.2 Cor Pulmonale 25
Fig. 1.3 Philosophical framework - self-care and 38
lifestyle change intervention
Fig. 2.1 Clark’s model of the suggested sequence 57
of events in a panic attack
Fig. 2.2 The four principles of person-centred care 74
Fig. 3.1 The research onion 80
Fig. 4.1 Thematic network illustration for the data 102
from the COPD group
Fig. 5.1 Thematic network illustration for the data from the HCP group 150

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LIST OF TABLES
Table 1.1 Stages of COPD – based on the GOLD criteria 20
Table 1.2 Inhaled treatments for COPD 28
Table 3.1 Steps in analyses employing thematic networks 95
Table 3.2 Examples of the development of themes 96
in Stage A of TNA for this study
Table 3.3 Examples of field notes 9 8
Table 4.1 Participants’ demographic data (COPD group) 101
Table 4.2 Themes from the COPD participant group data 103
Table 5.1 Participants’ demographic data (HCP group) 149
Table 5.2 Themes from the HCP group data 151

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