the lived experience of younger women with cancer of the vulva

348 Pages·2009·3.38 MB·English

THE LIVED EXPERIENCE OF
YOUNGER WOMEN WITH CANCER
OF THE VULVA:
A PHENOMENOLOGICAL STUDY

by

HILARY JANE JEFFERIES

A thesis submitted to
The University of Birmingham
For the degree of
DOCTOR OF PHILOSOPHY

School of Health Sciences
The University of Birmingham
September 208
Abstract

Cancer of the vulva is a comparatively rare cancer that requires radical surgery. Whilst the
physical effects of the surgery can readily be described, little is known about the
psychological, emotional and social impact of this condition. A review of the literature
showed a paucity of studies (Andersen and Hacker 1983; van de Wiel 1990; and Green et
al 2004) and produced limited insights into the wider impact of this disease. The question
driving this work is ‘What must it be like to be diagnosed with, and have surgery for, a
vulval cancer?’ The purpose was to gain an understanding of the women’s own
perspectives of their care and to inform the development of clinical nursing practice.

An interpretative phenomenological approach was taken based on the work of Heidegger
and van Manen (van Manen 1990; Mulhall 1996). Thirteen women were identified by
purposive sampling and interviewed. The women were all below 50 years of age and had
surgery to remove the cancer between 6 months and 5 years prior to the interview. The
data was analysed using framework analysis (Ritchie and Spencer 1994). Four key
concepts emerged from the data, Searching, Aloneness, All Change and Professional
Connectivity, and were shown to be incorporated within the four existentials of the every
day world, Lived Body, Lived Relationship, Lived Time and Lived Space (Van Manen
1990). The lived experience is described in its entirety by the concept of Invisibility which
reflects the challenges the women faced in living with a condition that is not recognised or
widely discussed, a factor that impacts on the way in which these women can share their
experience with family, friends and the health care professionals. The study concludes by
making tentative suggestions as to how the insights gained could be used to improve the
care of women with vulval cancer in the future.
Acknowledgements

There are many people to whom I would like to express my gratitude for their
encouragement and support during my research journey. In particular, I would like to
express my appreciation and thanks to the following:
• To all the women who through their experience of vulval cancer, took part in the
study to teach us how to care for women in the future.
• My supervisors at The University of Birmingham, Professor C. Clifford and Dr D.
Farrell, for all their help and guidance. Kate Lillie and Wendy Walker, fellow
travellers along the phenomenology road, have also been a great encouragement.
• Ms Jacky Cotton and the Birmingham Women’s Hospital NHS Foundation Trust
who contributed towards my fees and study leave.
• Keith Shankland, General Manager International Business Units, Owen Mumford
Ltd, who provided financial assistance for secretarial support in transcribing the
tapes and the cost of travelling to the interviews.

In addition, I have many friends and colleagues who have helped in a myriad of practical
ways. I would like to mention especially:
• Rev Denise Jones for encouraging me to persevere.
• Liz Coombes, my clinical supervisor, who ‘saw’, ‘heard’ and ‘talked’ to me in the
crucial writing and re-writing phase – a very wise monkey indeed.
• Helen Grew, my dear friend, who helped with proof reading.
Lastly, but by no means least, I would like to thank my husband Doug for all his support.
Thank you for tiptoeing around the house, forgoing weekend leisure and holiday breaks,
and always being there for me.

To Tim, Julia, Claire, Craig, Elizabeth and Rebekah, my thanks and love.
Table of Contents
ABSTRACT..........................................................................................................................2
ACKNOWLEDGEMENTS.................................................................................................3
LIST OF FIGURES ...........................................................................................................10
LIST OF TABLES .............................................................................................................11
GLOSSARY........................................................................................................................12
CHAPTER I..........................................................................................................................1
INTRODUCTION................................................................................................................1
1.1 Introduction ................................................................................................................1
1.2 Cancer of the vulva ....................................................................................................1
1.3 Background to the study............................................................................................4
1.3.1 Anecdotal awareness...................................................................................................................... 5
1.3.2 As a woman ................................................................................................................................... 6
1.4 Research question.......................................................................................................8
1.5 Framework of the study...........................................................................................10
1.6 Summary...................................................................................................................12
CHAPTER 2 .......................................................................................................................13
LITERATURE REVIEW..................................................................................................13
2.1 Introduction ..............................................................................................................13
2.2 Review of the literature ...........................................................................................13
2.3 Research designs.......................................................................................................19
2.4 Findings in the literature .........................................................................................30
2.4.1 Physical impact............................................................................................................................ 30
2.4.2 Psychological effects ................................................................................................................... 32
2.4.3 Impact on sexual function............................................................................................................ 35
2.4.4 Information provision .................................................................................................................. 41
2.4.5 Relationship with the health care team ........................................................................................ 43
2.4.6 Recommendations........................................................................................................................ 44
2.5 Summary...................................................................................................................46
CHAPTER 3 .......................................................................................................................48
METHODOLOGY.............................................................................................................48
3.1 Introduction ..............................................................................................................48
3.2 Phenomenology as a philosophy .............................................................................49
3.2.1 An Overview of the work of Husserl ........................................................................................... 50
3.2.2 Hermeneutic phenomenology: the work of Heidegger ................................................................ 52
3.2.3 An overview of the work of van Manen ...................................................................................... 54
3.3 Phenomenology as a research method....................................................................56
3.4 Design of the study ...................................................................................................62
3.5 Interview schedule....................................................................................................67
3.7 Sampling....................................................................................................................71
3.7 Ethical issues.............................................................................................................73
3.8 Summary...................................................................................................................77
CHAPTER 4 .......................................................................................................................78
DATA ANALYSIS .............................................................................................................78
4.1 Introduction ..............................................................................................................78
4.2 Framework Analysis ................................................................................................79
4.2.1 Familiarisation ............................................................................................................................. 81
4.2.2 Identifying a thematic framework................................................................................................ 81
4.2.3 Indexing ....................................................................................................................................... 83
4.2.4 Charting ....................................................................................................................................... 87
4.2.5 Mapping....................................................................................................................................... 93
4.3 Development of concepts .........................................................................................93
4.4 Integration of themes and concepts within the phenomenological framework..98
4.4 Summary.................................................................................................................101
CHAPTER 5 .....................................................................................................................103
THE STORIES.................................................................................................................103
5.1 Introduction ............................................................................................................103
5.2 The Stories ..............................................................................................................104
5.3 Overview .................................................................................................................119
5.4 Symptoms experienced ..........................................................................................121
5.4 Summary.................................................................................................................123
CHAPTER 6 .....................................................................................................................124
SEARCHING....................................................................................................................124
6.1 Introduction ............................................................................................................124
6.2 Searching to control the symptoms ......................................................................126
6.2.1 Searching to control by surgery ................................................................................................. 131
6.2.2 Searching to control emotions: informational needs.................................................................. 132
6.3 Searching for meaning...........................................................................................135
6.3.1 Situational meaning ................................................................................................................... 136
6.3.3 Significance of precancerous conditions.................................................................................... 139
6.3.4 Existential meaning ................................................................................................................... 141
6.4 Searching: the time element ..................................................................................143
6.5. Summary.................................................................................................................146
CHAPTER 7 .....................................................................................................................147
ALONENESS....................................................................................................................147
7.1 Introduction ............................................................................................................147
7.2 Aloneness: for want of nearness............................................................................149
7.3 Aloneness: for want of normality..........................................................................150
7.4 Aloneness: for want of awareness .........................................................................168
7.5 Aloneness: for want of openness ...........................................................................172
7.5.1 Stigma........................................................................................................................................ 174
7.5.2 A sense of embarrassment ......................................................................................................... 177
7.5.3 A lack of shared experience....................................................................................................... 179
7.6 Summary.................................................................................................................182
CHAPTER 8 .....................................................................................................................183
ALL CHANGE.................................................................................................................183
8.1 Introduction ............................................................................................................183
8.2 All Change: a difference ........................................................................................184
8.2.1 Delayed wound healing ............................................................................................................. 195
8.2.2 New challenges.......................................................................................................................... 198
8.3 All change: lack of choice ......................................................................................200
8.4 All Change: uncertainty ........................................................................................202
8.5 All Change: family and friends.............................................................................206
8.6 Summary.................................................................................................................213
CHAPTER 9 .....................................................................................................................215
PROFESSIONAL CONNECTIVITY ............................................................................215
9.1 Introduction ............................................................................................................215
9.2 Knowledge...............................................................................................................217
9.2.1 Nursing knowledge.................................................................................................................... 223
9.2.2 Dependency ............................................................................................................................... 227
9.2.3 Loss of faith ............................................................................................................................... 229
9.4 Communication ......................................................................................................231
9.4.1 Time element ............................................................................................................................. 239
9.4.2 Information provision ................................................................................................................ 241
9.4.3. Information provider.................................................................................................................. 248
9.5 Summary.................................................................................................................252
CHAPTER 10 ...................................................................................................................254
THE LIVED EXPERIENCE ..........................................................................................254
10.1 Introduction ............................................................................................................254
10.2.1 Invisibility: no-one can see it..................................................................................................... 257
10.2.2 Invisibility: no-one has heard of it ............................................................................................. 262
10.2.3 Invisibility: no-one talked about it ............................................................................................. 265
10.3 Impact of invisibility ..............................................................................................271
10.3.1 Invisibility of understanding...................................................................................................... 272
10.3.2 Invisibility of support ................................................................................................................ 274
10.4 Conclusion...............................................................................................................276
CHAPTER 11 ...................................................................................................................279
IMPLICATIONS AND FINAL REFLECTION ...........................................................279
11.1 Introduction ............................................................................................................279
11.2 Giving a voice..........................................................................................................279
11.3 Limitations ..............................................................................................................281
11.4 Considerations for practice ...................................................................................282
11.5 Considerations for further research.....................................................................285
11.6 Final reflection........................................................................................................286
REFERENCES.................................................................................................................289
Appendices ........................................................................................................................303
Appendix 1 Role of the Gynaecology Oncology CNS ..................................................304
Appendix 2 Cancer of the vulva.....................................................................................308
2.1 Aetiology of cancer.............................................................................................................................. 308
2.2 Anatomy of the vulva .......................................................................................................................... 309
2.3 Aetiology of vulval cancer................................................................................................................... 310
2.4 Incidence.............................................................................................................................................. 312
2.5 Screening methods............................................................................................................................... 312
2.6 Natural History .................................................................................................................................... 312
2.7 Signs and symptoms ............................................................................................................................ 313
2.8 Diagnosis ............................................................................................................................................. 313
2.9 Treatment............................................................................................................................................. 314
2.10 Adjuvant treatment ............................................................................................................................ 315
2.11 Prognosis ........................................................................................................................................... 315
Appendix 3 The nursing care of a patient following surgery for vulval cancer........316
Appendix 4 Interview schedule ......................................................................................320
Appendix 5 Information regarding the study...............................................................326
Appendix 6 Letter inviting the woman to participate in the study.............................328
Appendix 7 Consent form...............................................................................................329
Appendix 8 Letter to the hospital Consultant and GP ................................................330
Appendix 9 Copy of the ethical approval......................................................................331
Appendix 10 Letter from LREC requiring further clarification for Study ..............332
Appendix 11 Letter awarding £1500 from Owen Mumford Ltd for secretarial
support ..............................................................................................................................333
Appendix 12 Costs of completing the study..................................................................334
List of Figures

Figure 1 The continuum of the woman’s experience .......................................................5
Figure 2: Hermeneutical Circle of understanding ..........................................................53
Figure 3: Hermeneutical Spiral of understanding ..........................................................54
Figure 4: The Concept of Searching...............................................................................126
Figure 5: The Concept of Aloneness...............................................................................148
Figure 6: The Concept of All Change.............................................................................184
Figure 7: Altered body image: the impact .....................................................................186
Figure 8: The Concept of Professional Connectivity ....................................................217
Figure 9: The Concept of Invisibility .............................................................................257
Figure 10: The Impact of Invisibility .............................................................................271
Figure 11: The Lived Experience....................................................................................278
Figure 12: My Lived Experience ....................................................................................288