Space, Place and 'Home': lived experiences in Hospice Day Care

333 Pages·2012·9.29 MB·English

“Space, Place and ‘Home’: lived experiences in 
Hospice Day Care” 

By 

Andrew Moore 

A thesis submitted for the degree of DPhil at the University 
of Central Lancashire 

2010 

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"Space, Place and 'Home': Lived Experiences in Hospice Day
Care"
by
Andrew Moore
A thesis submitted in partial fulfilment for the requirements of
the degree of Doctor of Philosophy at the University of Central
Lancashire
February 2010
:g
'1J/1
TABLE OF CONTENTS
LIST OF FIGURES� vii
ACKNOWLEDGEMENTS � ix
A READER'S GUIDE TO THE TEXT� xi
ABSTRACT� xiii
AN INTRODUCTION TO THE STUDY � xv
Why this study? � xv
Volunteering as an introduction to place � xvii
A guide to the chapters � xxi
CHAPTER 1: BACKGROUNT AND LITERATURE REVIEW 1
The relationship between palliative care and traditional medical care �2
Palliative care and hospice � 4
The current situation and influences on hospice care � 6
Palliative day care � 8
Cancer �
9
Space, place and home � 9
Space, place and home in hospice care � 14
Health, Homelikeness and Inhabitation � 18
Hospice, place and the use of CAM � 20
Therapeutic Landscapes � 24
Conclusions � 26
CHAPTER 2: METHODOLOGICAL APPROACH � 27
The Aims of the Study � 28
Ontology, Epistemology and Theoretical Perspective � 29
Esences �
32
Embedded Knowledge and Fields of Care 32
Hermeneutic phenomenology 33
The Hermeneutic Circle 35
Sampling 36
Sample size and inclusion/exclusion criteria 37
Methods of Data Collection 38
Semi-structured Interviews 39
Photo-elicitation Interviews 41
Observation 43
Postcard Diaries 44
Trustworthiness and Validity 46
Generalisability 48
Conclusion 48
CHAPTER 3: CONDUCTING THE STUDY 50
Access and Ethical Considerations 50
Recruitment and consent 55
Data Collection: How the methods were used 60
Day care Patients
Interviews 60
Taking photographs 61
Photo-elicitation Interviews 61
Postcard Diaries 61
Observations 62
Staff and Therapists
Photo-elicitation interviews 64
Postcard diaries 65
Data Organisation and Analysis 65
Transcribing the Interviews 66
Analysing the interviews 69
Grappling with technique 70
II
Returning to a hermeneutic approach� 71
Ensuring validity in the analysis � 75
Deviant cases� 76
Observation: format and analysis� 76
Postcard Diaries: format and analysis� 77
The Reflective Diary
Data used� 78
Conclusion � 78
CHAPTER 4: AN INTRODUCTION TO THE FINDINGS �80
The Hospice Location � 80
The Complementary Therapy Rooms and the Building Development �83
An introduction to the participants � 84
Three Existential Modes of Being � 89
CHAPTER 5: DRIFTING � 91
Losing the map � 91
A sense of isolation - present but distant � 97
Fear of entering the hospice � 100
CTasawayin � 111
CT - "trying to put things back together" - Re-creating self � 115
Conclusion � 118
CHAPTER 6: SHELTERING � 121
The Certainty of Being Cared For � 122
"Nothing was trivialised" - The certainty of time and place � 122
Beyond expectations of care - developing confidence � 125
Feeling cared for - "A sense of care without a sense of duty" � 129
Called into belonging - "everybody knows your name here" - Being known �131
Finding a space - being smothered � 132
111
A Sense of Relatedness 133
"We're a rather odd group of people" - Normality in the abnormal community 133
Permanence and sustaining the community 138
Creating a space to cope 140
Walking with the patient 141
Sheltering within relationships - intimate spaces 143
A Sense of Homeliness 146
"A home from home" 147
Caring for day care and maintaining the home 152
Placing day care - "An extension of their own home" 153
Complementary Therapies: Sheltering/protecting/relieving 160
CT as an invitation to shelter 161
CT room as a homely environment 163
CT as a shelter 167
CT as part and parcel of sheltering 171
Conclusion 176
CHAPTER 7: VENTURING 178
The opportunity to live 179
Making achievements 182
"A vastly more interesting way forward" 183
"The opportunity to make a new start" 184
Venturing on common ground 186
The Garden: A part of place and a place apart 187
Expanding spaces 192
"They don't have to be here to get all this..." - moving out of the safe haven 194
CT as expanding the patients' world 195
Autonomy and the freedom to venture 197
Illness and venturing: the journey into new places 199
Crossing Thresholds And The Limits To Venturing 203
The boundaries to venturing 203
Upstairs Downstairs - the Living and Dying places 206
Conclusion 209
iv
CHAPTER 8: DISCUSSION AND CONCLUSIONS 211
The discovery of three existential modes of being 212
A view through the lens of my experience 213
Returning to the beginning 214
Notions of Home 216
Drifting and the loss of home 217
Crossing the hospice threshold 221
Complementary therapies as a way of finding home 225
Blurring the boundaries of therapies 228
Coming to Shelter 229
A home from home 233
Venturing - points of departure 235
Sheltering and venturing: dialectic experiences in hospice 238
Conclusion - Finding a sense of home 240
Limitations of the study 241
Contributions to knowledge 243
Implications for practice and recommendations 246
REFERENCES � 248
Appendix 1: Electronic mail correspondence with Gavin Andrews 262
Appendix 2: Memo to hospice departments from Head of Care 264
Appendix 3: Letter to Head of Care and Day Care Sister suggesting a
gardening activity 266
Appendix 4: Table of participation in data collection methods 270
Appendix 5: Core Services available across the whole hospice 272
Appendix 6: Electronic mail correspondence with David Seamon 273
Appendix 7: Invitation Letter to Patient 278
Appendix 8: Invitation Letter to Staff 279
Appendix 9: Invitation Letter to Complementary Therapist 280
Appendix 10: Patient Information Sheet 281
Appendix 11: Healthcare Staff Information Sheet 286
V
Appendix 12: Complementary Therapist Information Sheet � 291
Appendix 13: Patient Consent Form � 296
Appendix 14: Staff Consent Form � 297
Appendix 15: Complementary Therapist Consent Form � 298
Appendix 16: Patient Interview Schedule 1 � 299
Appendix 17: Patient Interview Schedule 2 � 301
Appendix 18: Healthcare Staff Interview Schedule � 304
Appendix 19: Complementary Therapist Interview Schedule � 307
vi
LIST OF FIGURES
Figure 3.1 Thematic analysis and the cut and paste method......................p.74
Figure 6. 1 The dining room............................................................................p.135
Figure 6.2 'The butterfly monument' ............................................................ p.'39
Figure6.3 A symbol of simplicity...................................................................p.143
Figure 6.4 The kitchen in day care................................................................p.148
Figure 6.5 The balcony in day care overlooking the gardens......................p.150
Figure 6.6 The gardens as viewed from the balcony in day care.................p.150
Figure 6.7 Flowers on the balcony in day care .............................................. p.155
Figure6.8 The day care living room..............................................................p.158
Figure6.9 The physiotherapy room...............................................................p.164
Figure 6.10 The reflexology chart, the picture of flowers and fruit,
andthe light box...............................................................................................p.164
Figure6.11 The complementary therapy room............................................p.165
Figure 7.1 The river at the bottom of the garden.........................................p.187
Figure 7.2 Cathy's reading place....................................................................p.188
Figure 7.3 A view of the garden from the dining room in day care............p.188
vii
Figure 7.4 The expansive top lawn of the hospice gardens..........................p.192
Figure 7.5 The front entrance and reception.................................................p.200
Figure 7.6 The reception and corridor looking towards the inpatients'
wards.................................................................................................................p.200
Figure7.7 The corridor from reception.........................................................p.202
Figure7.8 The corridor through day care.....................................................p.202
Figure7.9 The staircase from day care..........................................................p.207
viii