Women's Long-Term Life Experience After Pregnancy Termination for Fetal Abnormality

290 Pages·2017·1.58 MB·English

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Heba A. Hassan, The University of Western Ontario
Supervisor: Dr. Marilyn K. Evans, The University of Western Ontario
A thesis submitted in partial fulfillment of the requirements for the Doctor of Philosophy degree
in Nursing
© Heba A. Hassan 2015
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Hassan, Heba A., "Women's Long-Term Life Experience After Pregnancy Termination for Fetal
Abnormality: Interpretive Phenomenological Study" (2015). Electronic Thesis and Dissertation Repository.
2872.
https://ir.lib.uwo.ca/etd/2872
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WOMEN'S LONG-TERM LIFE EXPERIENCE AFTER PREGNANCY TERMINATION FOR
FETAL ABNORMALITY: INTERPRETIVE PHENOMENOLOGICAL STUDY

(Thesis format: Monograph)

By
Heba Hassan
Graduate Program in Nursing

A thesis submitted in partial fulfillment
of the requirements for the degree of
Doctor of Philosophy

The School of Graduate and Postdoctoral Studies
The University of Western Ontario
London, Ontario, Canada

© Heba Hassan 2015
ABSTRACT AND KEYWORDS
Advances in prenatal screening and its availability for every woman have resulted in
increasing the number of identified fetal abnormalities. The discovery of fetal abnormalities in
the second trimester of pregnancy can force pregnant women into the dilemma of deciding the
fate of their wanted pregnancies. A woman's decision to terminate her pregnancy for a fetal
abnormality in the second trimester is a very difficult and complicated decision.
An interpretive phenomenological approach was used to gain an in-depth understanding
of the long-term experiences of women who terminated their pregnancy for fetal abnormalities
and reveal the meanings embedded in their experiences. Conversational in-depth interviews
were conducted with ten women who had terminated their pregnancy more than five years
previously. Thematic analysis guided by van Manen's approach was used to uncover the
meaning of the women's experiences. Six themes were identified as characteristics of the
women's experiences over time: encountering the unexpected, making sense of the unexpected,
facing the inevitable decision, living with the decision, feeling supported, and changing
perspectives.
The findings inform health care professionals about the complexities of these women's'
experiences, perinatal grief and bereavement. It is hoped that health care professionals will
evaluate their prenatal screening and counseling practices, and review their present models of
care in light of these findings. Implications for practice and recommendations for future research
are discussed.
Key words: pregnancy termination, pregnancy loss, fetal abnormality, perinatal grief, prenatal
screening.

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ACKNOWLEDGMENTS
There are many people to whom I would like to express my gratitude for their
encouragement and support during my research journey. I would first like to thank all the
wonderful women who shared their stories with me. They generously told their lived
experiences which were keys to making this research find fulfillment and completion. My
thanks and appreciation to Dr. Marilyn Evans, my thesis supervisor, for persevering with me as a
supervisor throughout the time it took me to complete this research and write the dissertation.
This work exists due to your direction, encouragement, and guidance. The members of my
dissertation committee, Dr. Cheryl Forchuk and Dr. Eunice Gorman, have generously given their
time and expertise to better my work. I thank them for their contribution and their good-natured
support. Both of you provided me with further insight into my work for which I am grateful.
Finally, I would like to thank my family for supporting me in every way possible. I thank
my husband, my best friend, and true love, Moustafa Ghanem, for always being there for me.
Without your support and cooperation my work could never have been completed. Thank you to
my daughters, Esraa, Alaa, and Hayat. Your hugs, love, patience, and encouragement sustained
me throughout the entire process. Thank you for being the joy and happiness of my life.

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TABLE OF CONTENTS
ABSTRACT AND KEYWORDS...................................................................................................ii
ACKNOWLEDGMENTS..............................................................................................................iii
TABLE OF CONTENTS...............................................................................................................iv
LIST OF TABLES.......................................................................................................................viii
LIST OF APPENDICES................................................................................................................ix
CHAPTER ONE-INTRODUCTION...............................................................................................1
Background and Significance..........................................................................................................5
Purpose and Specific Aims..............................................................................................................7
Research Questions..........................................................................................................................7
Significance of the Study.................................................................................................................8
Declaration of Self...........................................................................................................................8
Organization of the Dissertation....................................................................................................13
CHAPTER TWO-LITERATURE REVIEW.................................................................................14
Search Strategy..............................................................................................................................14
Prenatal Screening and Diagnosis..................................................................................................15
Current Practice.............................................................................................................................16
Prenatal screens...................................................................................................................16
Normalization and Routinization of Prenatal Screening Tests......................................................19
Autonomy and Informed Consent..................................................................................................23
Perinatal Loss................................................................................................................................27
Termination of Pregnancy for Fetal Abnormality.........................................................................30
Perinatal Bereavement, Perinatal Grief, Mourning.......................................................................31
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Grief and Bereavement after TOPFA............................................................................................34
Empirical Research on TOPFA.....................................................................................................38
Grief and Psychological Sequelae due to TOPFA.........................................................................38
Short-term studies................................................................................................................38
Long-term studies................................................................................................................42
Decision Making Process in TOPFA.............................................................................................45
Qualitative Studies on TOPFA......................................................................................................51
Summary........................................................................................................................................57
CHAPTER THREE- Ethical Issues Regarding Abortion..............................................................58
Abortion Law and Policy...............................................................................................................58
Canada's legal situation........................................................................................................58
The Abortion Debate......................................................................................................................59
The moral status of the fetus................................................................................................59
Sentience..............................................................................................................................63
Personhood...........................................................................................................................65
The potentiality argument....................................................................................................67
The autonomy and rights of women....................................................................................69
Summary..............................................................................................................................72
CHAPTER FOUR- Research Methodology and Methods............................................................73
Historical Background of Phenomenology....................................................................................74
van Manen's Research Approach............................................................................................................83
Recruitment....................................................................................................................................86
The study sample...........................................................................................................................87
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Data collection methods.................................................................................................................90
Data Analysis.................................................................................................................................93
Credibility and Authenticity of Interpretive Phenomenology.......................................................96
Credibility criteria................................................................................................................96
Authenticity criteria.............................................................................................................99
Research Ethics............................................................................................................................102
Summary......................................................................................................................................103
CHAPTER FIVE- Women's Voiced Experiences of Pregnancy Termination............................104
Participants' Profiles....................................................................................................................105
Participants' Themes....................................................................................................................115
Theme I Encountering the Unexpected.............................................................................118
Theme II Engaging in sense making of the unexpected...................................................122
Theme III Facing the Inevitable Decision.........................................................................127
Conceptualizing the decision...................................................................................128
Decision paradoxes..................................................................................................134
Persistent unresolved issues.....................................................................................140
Theme IV Living with the Decision..................................................................................143
The challenges.........................................................................................................143
Moving on................................................................................................................147
Theme V Feeling Supported.............................................................................................150
Women's needs........................................................................................................150
Relating with others.................................................................................................153
Seeking support.......................................................................................................159
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Theme VI Changing Perspectives.......................................................................................161
Summary......................................................................................................................................163
CHAPTER SIX- What Can We Learn?.......................................................................................165
Violation of Expectations............................................................................................................165
Perception of Prenatal Screenings...............................................................................................167
Dealing with Uncertainty.............................................................................................................174
Perceived Decisional Dilemmas..................................................................................................179
Dealing with Complicated Grief..................................................................................................190
Perceived Support........................................................................................................................194
CHAPTER SEVEN-CONCLUSION..........................................................................................203
The Limitation of the Research...................................................................................................205
Strengths of the Research.............................................................................................................206
Implications for Nursing Practice................................................................................................206
Implications for Policy.................................................................................................................212
Implications for Future Research.................................................................................................214
Summary......................................................................................................................................215
REFERENCES............................................................................................................................216
APPENDICES.............................................................................................................................262
CURRICULUM VITAE..............................................................................................................278

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LIST OF TABLES
Table I Participants' characteristics.......................................................................................89
Table II Participants' Themes and Sub-themes......................................................................118

viii
LIST OF APPENDICES
APPENDIX...............................................................................................................................Page
A Organization Request letter....................................................................................................262
B Poster.......................................................................................................................................263
C Web Research Study Announcement......................................................................................264
D Letter of Information...............................................................................................................265
E Consent Form..........................................................................................................................269
F Demographic Questionnaire....................................................................................................270
G Interview Guide (First Interview)...........................................................................................274
H List of Services and Resources...............................................................................................275
I Interview Guide (Second Interview)........................................................................................276
J Ethics Approval Notice............................................................................................................277

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