of women with a cervical screening detected abnormality

311 Pages·2004·1.64 MB·English

The ‘lived experience’ of women with a
cervical screening detected abnormality:
A phenomenological study

Elaine Dietsch
RN, CM, FPNP, WHNP, ANS (WH), Dip SHC, MN (WH)

A Thesis Submitted in Total Fulfilment of
the Requirements for the
Degree of Doctor of Philosophy

Faculty of Health Studies
Charles Sturt University
July 2003
Table of Contents
Page
Certificate of Authorship of Thesis v
Acknowledgments vi
Abstract viii

Chapter 1: Introduction and literature review 1
Background to and rationale for the study 1
Literature review 4
Biomedical paradigm 5
Psychological paradigm 18
Social barriers to receiving follow-up investigations 22
Women’s experience 24
Sense of self threatened by an abnormal Pap test result 32
The experience of ‘marginalised’ women 39
The literature, or lack thereof, confirms the need for this study 43

Chapter 2: The philosophy, theory and methodology that informed this study 45
Introduction 45
The phenomenological evolution 46
Husserlian phenomenology 47
Heideggerian phenomenology 49
Gadamerian phenomenology 52
Habermasian phenomenology 60
The French phenomenologists 61
Theoretical principles at the heart of this study 62
Emancipation: The feminist approach 63
Critical theory 68
Phenomenology and nursing 75
From philosophy, theory and methodology to method 80

Chapter 3: Method 82
The ethical dilemma 83
The academic dilemma 84
The philosophical dilemma 85
The phenomenological process 85
Ethical considerations 85
Identifying the phenomenon 87
Selection of participants 88
Gathering the data 91
Analysing the data 94
Validity and reliability in phenomenological research 101
Maintaining rigour 104
Conclusion 108
ii
Chapter 4: Women defining themselves: Shared stories about private trauma 109
Perceived association between stress and cervical intraepithelial neoplasia 109
Back to the stresses … 110
Physical violence 113
Alcohol and drug misuse 118
Sexual trauma 120
Deep grief and profound loss 128
Terry’s paradigm story 133

Chapter 5:Abjection 135
Absolute fear 136
Loneliness 142
Guilt, judgment and punishment 146
Feeling dirty 148
Body dysphoria 151
Self-blame 153
Bleeding 155
The smell 156
The pain 157
Vulnerability 158
Fear of recurrence 165
Melanie’s paradigm story 168

Chapter 6: The Nocebo Effect 170
Waiting 171
Waiting months for an appointment 172
Waiting with many others 175
Waiting hours to see the clinician 176
Waiting weeks for the results 178
Health professionals serving the system 179
Inaccessibility and inflexibility of health professionals 181
Omnipotence, omniscience and infallibility – Medical dominance 182
Offensive language and communication 190
Confidentiality broken 192
Professional coolness 193
Reductionism 196
Heterosexism 197
Information withheld and consent uninformed 198
Not listening negates a person’s ‘knowing’ 203
Uncaring professionals 205
Clinical iatrogenesis 206
Cascade of problems 209
Professional incompetence 211
Jayne’s paradigm story 212

iii
Chapter 7: Transformations 215
A different time 216
‘Becoming’ 216
Enjoying life 217
More altruistic 219
Anger 220
Assertiveness 221
The road to self-healing 224
Spiritual comfort 228
Stronger 230
Janette’s paradigm story 232

Chapter 8: Recommendations 234
Working with women who have survived violence 236
Addressing feelings of loneliness 240
Reducing fear 242
Transforming nursing practice 246
Mutual respect 248

Chapter 9: Conclusion 250
Major outcomes from the review of the literature and key findings from the study 250
Strengths of the study 253
Limitations of the study 254
Power imbalance between myself and informants 256
A retrospective study 257
Avenues for further research 257
A few final words 258

List of references 260

Appendices 295
Appendix 1: Ethical clearance
Appendix 2: Publications, conference presentations, seminars and workshops
arising from the research project
Appendix 3: Research pathway
Appendix 4: Thesis pathway

iv
HD7
CERTIFICATE OF AUTHORSHIP OF THESIS &
AGREEMENT FOR THE RETENTION & USE OF
THE THESIS
DOCTORAL AND MASTER BY RESEARCH APPLICANTS
To be completed by the student for submission with each of the
bound copies of the thesis submitted for examination to the Centre of
Research & Graduate Training.

For duplication purpose, please TYPE or PRINT on this form in
BLACK PEN ONLY.
Please keep a copy for your own records.

I Elaine Dietsch

Hereby declare that this submission is my own work and that, to the best of my knowledge and belief, it contains
no material previously published or written by another person nor material which to a substantial extent has
been accepted for the award of any other degree or diploma at Charles Sturt University or any other
educational institution, except where due acknowledgment is made in the thesis. Any contribution made to the
research by colleagues with whom I have worked at Charles Sturt University or elsewhere during my
candidature is fully acknowledged.

Should this thesis be favourably assessed and the award for which it is submitted approved, I agree to provide
at my own cost a bound copy of the thesis as specified in the Rules for the presentation of theses, to be lodged in
the University Library. I also agree that the thesis be accessible for the purpose of study and research in
accordance with the normal conditions established by the University Librarian for the care, loan and
reproduction of thesis.*

Signature Date

* Subject to confidentiality provisions as approved by the University

v
Acknowledgments

Janette, Jayne, Annabelle, Ann, Margaret, Marie, Rita, Melanie, Joyce, Faye, Julie,
Terry and Megan are the women who shared their stories so generously with me. It is
these strong, wise and courageous women who breathed life into this thesis.

This study would not have been possible without the support, encouragement and
affirmation given to me selflessly by my husband, John. Early in the research journey,
when I was plagued with doubt that I could complete the task, I received a wonderful
endorsement from him in the form of a poster he’d made and placed above my
computer desk. It read:
When facing a tall and threatening mountain, there is no better place to
start climbing than in the shadow of the Almighty, hand in hand with the
one you love… John 9.2.99 … Together we will see this PhD through.
True to his promise, John has been by my side, hand in hand with me every step of the
way.

I have been blessed with the three most patient, supportive, encouraging and wise
supervisors, Professor Heather Gibb and Dr Karen Francis from Charles Sturt
University and Dr Michael Carey from the University of Technology, Sydney.

Almost thirty years ago, three women provided me with a nursing and midwifery
heritage that enabled me to complete this thesis. The late Pam Hind (nee Lloyd) taught
me the art of nursing gentleness and the value of listening to another human being.
Margaret Hind instilled in me the love, confidence and joy found in acquiring new
knowledge and Jan Robinson, a midwife, shared with me what it means to truly be with
women, learning from and with them.

I had the privilege of working with an incredible team of women’s health nurses in the
Greater Murray Area Health Service: Brigitte Weber, Hilda Fitzgerald, Marilynne
Watson and Jenny Jordan. This team of specialist nurses gave their time, expertise and
support willingly. They introduced me to the amazing participants in this project. As a
research support team they both challenged and affirmed my work.
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This project was enhanced by the assistance of fantastic librarians including Alice
Ferguson, Yuming Han-Hepworth and Robyn Lonard from Charles Sturt University,
Wagga Wagga Campus. They managed to find and obtain copious and often very
obscure reference materials. Their patience and support proved invaluable.

I have been sandwiched between two generations that believed in and supported me, my
parents, Lillian and Paddy Adams and John and my adult ‘children’ Sarah, Mark,
Nathan and Cathy. My father has, in recent years, taught me more about the art of
caring than I could have learnt from any nursing text.

The National Women’s Health Program provided a $10,000 research grant to cover the
costs of equipment needed to initiate this study. A $4,000 Mitchellsearch Award from
Charles Sturt University supported the continuation of the research, the presentation of
preliminary findings at conferences and allowed me to contract the services of Di
Davies in the final proofreading and presentation of this thesis. The encouragement,
time and energy given to me by Di and her wonderful sister, Carmel Davies has been
priceless. I am extremely appreciative to both Di and Carmel for their assistance.

vii
Abstract

This thesis focuses on the stories of thirteen women who had experienced an abnormal
Pap test result. A review of the literature demonstrated that, while much research had
investigated the biomedical aspects of cervical intraepithelial neoplasia (CIN) and
cervical cancer, very few studies in comparison had explored women’s experiences of
having a cervical screening abnormality detected. The majority of those studies related
to cervical cancer and assumed a homogenous sample of English speaking,
heterosexual, middle class and well-educated women.

It is argued that the stories of women whose voices are silent in the literature need to be
heard, so that health professionals can learn from women how to enhance their clinical
practice to ensure the best possible health outcomes for women with a screening
detected cervical abnormality.

The research aimed to answer the question, ‘What is the “lived experience” of women
who have had an abnormal Pap test result?’ The thirteen participants were from groups
considered at greatest risk of developing CIN/cancer and least likely to access cervical
screening services. Each participant was interviewed on between two and five
occasions, for one and a half to four hours per interview. At the first interview,
participants were asked to respond to two predetermined prompts. The first, ‘Please tell
me about yourself as a woman’ was asked in an endeavour to encourage the woman to
share her story in a manner that was contextualised, integrated and whole. The second
prompt was, ‘Please tell me about your experience when you had an abnormal Pap test
result’. At the remaining interviews, an unstructured approach was adopted and the
women were asked to clarify any issues that had arisen in previous interviews. Only the
first interview was audiotaped, transcribed verbatim and analysed. Analysis and
interpretation occurred simultaneously and were in keeping with the principles outlined
by the hermeneutic phenomenologist, Gadamer (1975a).

Four major thematic interpretations emerged from the transcript analysis and form the
basis of the interpretive chapters. The first represents how the participants defined
themselves according to life stressors. These stressors were of a devastating nature
viii
related to physical violence, sexual trauma and/or profound grief and loss, mostly
experienced in their intimate and family relationships. This is the first study to explore
how women define themselves within the parameters of violence and how a woman’s
previously traumatised self can be further threatened by the experience of having an
abnormal Pap test result. This sense of being threatened is referred to as ‘abjection’ and
forms the second theme.

Feelings of abjection were accentuated by the disservice, harm and injury the
participants experienced within the health system and were identified as the ‘Nocebo
Effect’ in the third theme. The fourth and final interpretive chapter explores how
women, having felt threatened on multiple occasions, were able to transform and
redefine themselves as strong, assertive women, no longer the victims of their
circumstances.

The final chapter cautions against generalisations and concludes with a discussion of
potential further research avenues.
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Chapter 1
Introduction and literature review

Background to and rationale for the study
Everyday, millions of healthy women in industrialised nations attend a health
professional, usually a medical practitioner, for a Pap test. They choose to submit
themselves to this gynaecological procedure because they wish to be both reassured and
insured. Reassurance comes from an objective, scientific test that they are indeed as
healthy as they believe themselves to be and they feel insured against the possibility that
they might develop cervical cancer.

The majority of women receive their desired reassurance and insurance. However, a
significant minority, up to one in twenty women having a Pap test in New South Wales,
will be faced with an abnormal Pap test result (NSW Cervical Screening Program
1997). When a woman has an abnormal Pap test result, the previously hidden cervix is
not the only part of her to come under medical surveillance. Cervical pathology detected
at screening exposes her deeply personal and often times intimate past and present
lifestyle choices or impositions, such as a history of sexual abuse, to scrutiny. For a
woman with an abnormal Pap test result the past suddenly becomes the present and
threatens her future.

Thirteen women who had an abnormal Pap test result shared their stories in this
phenomenological research project and chose their own pseudonym. They wished to be
known as Ann, Annabelle, Faye, Janette, Jayne, Joyce, Julie, Margaret, Marie, Megan,
Melanie, Rita and Terry. The women, almost all of whom were clients of a women’s
health nurse clinic in rural Australia at the time the project was initiated, were invited to
participate in the study. The women were purposively invited because they identified as
being from groups whose voices were silent in the professional nursing/medical
journals. They were from the same groups identified as being at greatest risk of cervical
intraepithelial neoplasia (CIN) and given priority of access to cervical screening
attended by women’s health nurses. In keeping with the nature of phenomenology, the
participants were never asked to share instances of trauma. Instead, they were invited to
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