Women's experience of coping with termination of pregnancy for fetal abnormality

474 Pages·2016·3.19 MB·English

Women’s experience of coping with termination of
pregnancy for fetal abnormality: Coping strategies,
perinatal grief and posttraumatic growth

Caroline Lafarge

A thesis submitted in partial fulfilment of the requirements of the
University of West London for the degree of Doctor of Philosophy

June 2015
Abstract

Pregnancy termination for fetal abnormality (TFA) represents 2% of all terminations in
England and Wales. In recent years, the number of TFAs has risen (3,099 in 2014 compared
to 2,085 in 2009) due to technological developments in prenatal diagnosis and increased
maternal age, which have led to a growing number of fetal abnormalities being identified,
and this earlier in pregnancy. Research suggests that TFA can have negative, long-lasting
psychological consequences for women. These include depression, posttraumatic stress
disorder and complicated grief. However, at the inception of the research programme, no
research had been conducted on women’s coping processes when dealing with TFA despite
clear evidence of a relationship between coping processes and psychological adjustment in
other areas of health research. Similarly, although research indicates that some individuals
experience positive growth as a result of trauma, no empirical work had been undertaken on
potential positive psychological outcomes following TFA. Finally, a dearth of research on
health professionals’ understanding of women’s coping with TFA was also identified, despite
the likely impact this understanding would have upon women’s experience of care and the
way they cope with TFA.
This thesis aims to address these knowledge gaps in order to further our
understanding of women’s experience of TFA. Specifically, the research had three main
objectives: 1) to gain an understanding of women’s coping strategies when dealing with TFA;
2) to examine the relationship between coping and psychological outcomes, as defined by
perinatal grief and posttraumatic growth; and 3) to investigate health professionals’
perceptions of women’s coping to identify potential disparities between health professionals’
and women’s accounts.
To answer these objectives, a mixed methodology was utilised and five studies were
conducted: a systematic review of the qualitative evidence pertaining to women’s
experiences of TFA; two qualitative studies: the first one exploring women’s coping
strategies when dealing with TFA, and the second one investigating health professionals’
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perceptions of women’s coping; and, finally, two quantitative studies: the first one examining
the relationship between coping strategies and perinatal grief, and the second one
assessing the relationship between coping, perinatal grief and posttraumatic growth. The
empirical work relating to the women was carried out online, with participants recruited from
a specialist support organisation. The empirical work concerning the health professionals
was conducted face-to-face, with participants recruited from three hospitals in England.
Ethical approval was obtained for all studies prior to fieldwork commencing.
The research generated several important findings, which both build upon existing
evidence and further our insights into women’s experience of TFA. Firstly, the research
clearly indicates that women regard TFA as a traumatic event, which is akin to an existential
crisis and which can have negative psychological consequences. Women view TFA as a
unique form of bereavement, which can be misunderstood and stigma-bearing. The research
also indicates that TFA is an individual as well as a social phenomenon with women’s
experiences both shaping and reflecting the political and sociocultural environment within
which TFA occurs.
Secondly, the research shows that coping with TFA involves four main strategies:
‘support,’ ‘acceptance,’ ‘avoidance,’ and ‘meaning attribution’ which are relevant to both the
termination procedure and its aftermath. The findings also reveal that, despite mainly using
coping strategies considered to be adaptive, women’s levels of grief are high, and that, for
some individuals, distress persists long after the termination. The research also provides
evidence of a relationship between coping and psychological adjustment to TFA, with strong
associations observed between several coping strategies and psychological adjustment. In
particular, the research shows that coping strategies such as ‘acceptance’ and ‘positive
reframing’ are closely associated with lower levels of grief, whilst ‘self-blame’ and
‘behavioural disengagement’ relate to higher grief levels.
Thirdly, the research offers new insights into the potential for personal growth
following TFA. This is particularly manifest in the qualitative investigations and, although it is
less evident in the quantitative study, moderate levels of growth were observed for several
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growth dimensions: ‘relating to others,’ ‘personal strengths’ and ‘appreciation of others.’ The
findings also indicate that a relationship exists between coping and posttraumatic growth,
with ‘positive reframing’ being a significant predictor of growth.
Lastly, the findings reveal that health professionals have a valid understanding of
women’s short-term coping strategies when dealing with TFA, but have limited insights into
their long-term coping processes. This points to a deficit in aftercare, an issue which was
raised by the women in this research.
Collectively, these findings have important implications in terms of theory, practice
and future research in the area of TFA, which are considered in this thesis. Among the most
significant ones are the need to identify women at risk of poor psychological adjustment, the
need for a truly women-centred care that continues well beyond the termination, as well as
the importance of ‘acceptance’ and ‘positive reframing’ as potential protective factors against
distress and of ‘positive reframing’ as a potential foundation for growth. A corollary of the
research is the development and implementation of a psychological intervention to support
women following TFA. This proposed intervention is underpinned by the reported high levels
of grief, the deficit in aftercare, and the potential for growth following TFA, and represents
the next step of the research programme.

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Acknowledgements

I would like, first and foremost, to acknowledge both my supervisors, Professor Kathryn
Mitchell and Dr Pauline Fox, for their continuing support, encouragement and guidance
through this immensely stimulating and rewarding academic journey. I cannot thank them
enough for the advice they have given me and for their interest in my work. For all this, I am
extremely grateful. My thanks also go to my colleagues in the Psychology department and,
in particular, to Lee Usher for being such an empathetic listener.

I also wish to thank Jane Fisher and Sally George from Antenatal Results and Choices
(ARC) who have been extremely supportive throughout this process, not least by giving me
the opportunity to interview ARC members. I would also like to express my gratitude to
Helen Statham from the University of Cambridge for her support and for having shared with
me her experience of conducting research in the area of pregnancy termination for fetal
abnormality. Last but not least, I wish to acknowledge the generosity and openness of the
participants, whose moving and humbling stories I have had the privilege to share.

Finally, I wish to express my extreme gratitude to my husband, Tris, for his unwavering
support during this journey, and to my lovely children, Greta and Laszlo, who have been so
patient and have refrained from asking ‘when are you finishing your PhD?’ I would also like
to thank my close family and friends for their continuous support and encouragement, and
the hours of childcare they have provided me with.

To Tadzio

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Table of Contents
Abstract ............................................................................................................................... 2
Table of Contents ................................................................................................................ 6
List of Tables ..................................................................................................................... 11
List of Figures ................................................................................................................... 14
Overview of the thesis ...................................................................................................... 15
Chapter 1 - Introduction to the research ......................................................................... 18
1.1 TFA in context ....................................................................................................... 18
1.1.1 Medical and legal frameworks surrounding TFA ............................................ 18
1.1.2 Incidence of TFA ............................................................................................ 23
1.1.3 TFA as a unique form of perinatal loss ........................................................... 24
1.1.4 Ethical considerations related to TFA ............................................................. 26
1.1.5 TFA in practice ............................................................................................... 33
1.1.6 Summary - TFA in context ............................................................................. 36
1.2 Women’s psychological adjustment to TFA ........................................................... 37
1.2.1 Overview of the literature review .................................................................... 37
1.2.2 Women’s psychological adjustment to TFA .................................................... 39
1.2.3 Factors associated with psychological adjustment to TFA.............................. 42
1.2.4 Summary of the literature review .................................................................... 50
1.3 Coping, perinatal grief and posttraumatic growth in the context of TFA ................. 51
1.3.1 Coping with TFA ............................................................................................ 51
1.3.2 Perinatal grief following TFA .......................................................................... 55
1.3.3 Posttraumatic growth following TFA ............................................................... 58
1.3.4 Summary of the psychological constructs relevant to TFA ............................. 62
1.4 Rationale, aims and objectives of the research ..................................................... 63
1.4.1 Rationale and aims of the research ................................................................ 63
1.4.2 Knowledge gaps and research objectives ...................................................... 65
1.5 Conclusions and implications for the thesis ........................................................... 67
Chapter 2 - Pregnancy termination for fetal abnormality: A systematic review and
synthesis of women’s experiences ................................................................................. 68
2.1 Introduction ........................................................................................................... 68
2.1.1 The development of systematic reviews and syntheses of qualitative evidence .
...................................................................................................................... 68
2.1.2 Aims of the review ......................................................................................... 70
2.2 Methods ................................................................................................................ 70
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2.2.1 Design ........................................................................................................... 70
2.2.2 Search strategy and data sources .................................................................. 72
2.2.3 Study selection .............................................................................................. 73
2.2.4 Reflexivity ...................................................................................................... 74
2.2.5 Data extraction and synthesis ........................................................................ 75
2.3 Findings ................................................................................................................ 77
2.3.1 Description of the studies ............................................................................... 78
2.3.2 Themes identified in the review ...................................................................... 81
2.3.3 Interpretative framework: TFA as an existential crisis .................................... 97
2.4 Discussion .......................................................................................................... 100
2.4.1 TFA as a traumatic event ............................................................................. 100
2.4.2 The potential for growth ............................................................................... 101
2.4.3 Bereavement or abortion paradigm .............................................................. 102
2.4.4 The importance of context............................................................................ 103
2.4.5 Limitations of the review .............................................................................. 104
2.5 Conclusions and implications for the thesis ......................................................... 105
Chapter 3 - Methods ........................................................................................................ 106
3.1 Theoretical framework ........................................................................................ 106
3.1.1 Paradigms in social research ....................................................................... 106
3.1.2 Theoretical grounding of pragmatism ........................................................... 107
3.1.3 Pragmatism and the mixed methods approach ............................................ 108
3.1.4 Rationale for adopting a mixed methods approach ...................................... 109
3.1.5 Methodological approaches ......................................................................... 110
3.2 Quantitative empirical work ................................................................................. 112
3.2.1 Sampling ...................................................................................................... 112
3.2.2 Data collection ............................................................................................. 119
3.2.3 Ethics ........................................................................................................... 127
3.2.4 Quantitative analyses and statistical tests .................................................... 130
3.3 Qualitative empirical work ................................................................................... 132
3.3.1 Qualitative exploration of women’s coping strategies when dealing with TFA ....
.................................................................................................................... 133
3.3.2 Health professionals’ perceptions of women’s coping with TFA ................... 141
3.4 Conclusions and implications for the thesis ......................................................... 147
Chapter 4 - Women's coping with pregnancy termination for fetal abnormality: An
Interpretative Phenomenological Analysis of women's experiences .......................... 148
4.1 Introduction ......................................................................................................... 148
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4.2 Methods .............................................................................................................. 149
4.2.1 Summary of the methodology ...................................................................... 149
4.2.2 Participants’ profile....................................................................................... 150
4.2.3 Data analysis ............................................................................................... 153
4.3 Findings .............................................................................................................. 155
4.3.1 Coping with the procedure ........................................................................... 155
4.3.2 Post termination coping ............................................................................... 164
4.4 Discussion .......................................................................................................... 175
4.4.1 Support ........................................................................................................ 176
4.4.2 Acceptance .................................................................................................. 177
4.4.3 Avoidance .................................................................................................... 178
4.4.4 Meaning attribution ...................................................................................... 179
4.4.5 Other coping strategies ................................................................................ 179
4.4.6 Adaptive versus maladaptive coping strategies ............................................ 180
4.4.7 Limitations of the study ................................................................................ 181
4.5 Conclusions and implications for the thesis ......................................................... 183
Chapter 5 - Perinatal grief following termination of pregnancy for fetal abnormality:
The role of coping strategies ......................................................................................... 185
5.1 Introduction ......................................................................................................... 185
5.2 Methods .............................................................................................................. 186
5.2.1 Summary of the methodology ...................................................................... 186
5.2.2 Statistical data analysis ................................................................................ 187
5.3 Results ................................................................................................................ 192
5.3.1 Participants’ profile....................................................................................... 192
5.3.2 Women’s use of coping strategies ............................................................... 195
5.3.3 Women’s levels of perinatal grief ................................................................. 209
5.3.4 Relationship between coping strategies and perinatal grief .......................... 216
5.3.5 Comparison between the qualitative findings and quantitative results on
women’s coping strategies ........................................................................... 228
5.4 Discussion .......................................................................................................... 234
5.4.1 Women’s use of coping strategies ............................................................... 234
5.4.2 Women’s levels of perinatal grief ................................................................. 235
5.4.3 The relationship between coping strategies and levels of perinatal grief ...... 236
5.4.4 Other factors contributing to women’s high levels of grief ............................ 237
5.4.5 Limitations of the study ................................................................................ 238
5.5 Conclusions and implications for the thesis ......................................................... 239
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Chapter 6 - Health professionals’ perceptions of women’s coping with pregnancy
termination for fetal abnormality ................................................................................... 241
6.1 Introduction ......................................................................................................... 241
6.2 Methods .............................................................................................................. 242
6.2.1 Summary of the methodology ...................................................................... 242
6.2.2 Participants’ profile....................................................................................... 243
6.2.3 Data analysis ............................................................................................... 244
6.3 Findings .............................................................................................................. 245
6.3.1 Health professionals’ reflexions about coping with TFA and their role in
supporting women ....................................................................................... 246
6.3.2 Health professionals’ perceptions of women’s coping strategies .................. 263
6.3.3 Comparison between health professionals’ and women’s accounts ............. 275
6.4 Discussion .......................................................................................................... 278
6.4.1 Health professionals’ assumptions regarding women’s coping with TFA ...... 279
6.4.2 Congruence between health professionals and women ............................... 279
6.4.3 Women’s need for health professionals’ emotional support .......................... 280
6.4.4 The need for aftercare ................................................................................. 281
6.4.5 Limitations of the study ................................................................................ 282
6.5 Conclusions and implications for the thesis ......................................................... 283
Chapter 7 - Posttraumatic growth following termination of pregnancy for fetal
abnormality: The role of coping strategies and perinatal grief .................................... 285
7.1 Introduction ......................................................................................................... 285
7.2 Methods .............................................................................................................. 286
7.2.1 Summary of the methodology ...................................................................... 286
7.2.2 Statistical data analysis ................................................................................ 287
7.3 Results ................................................................................................................ 291
7.3.1 Participants’ profile....................................................................................... 291
7.3.2 Women’s use of coping strategies ............................................................... 294
7.3.3 Women’s levels of perinatal grief ................................................................. 310
7.3.4 Longitudinal analysis .................................................................................... 318
7.3.5 Women’s levels of posttraumatic growth ...................................................... 319
7.3.6 Relationship between coping strategies, perinatal grief and posttraumatic
growth .......................................................................................................... 328
7.4 Discussion .......................................................................................................... 340
7.4.1 Women’s use of coping strategies and their levels of perinatal grief ............ 341
7.4.2 Women’s levels of posttraumatic growth ...................................................... 342
7.4.3 The relationship between coping strategies and posttraumatic growth ......... 345
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7.4.4 Limitations of the study ................................................................................ 346
7.5 Conclusions and implications for the thesis ......................................................... 348
Chapter 8 - General discussion and conclusions ......................................................... 350
8.1 Introduction ......................................................................................................... 350
8.2 Summary of the findings ..................................................................................... 351
8.3 Contribution to knowledge ................................................................................... 353
8.4 Implications of the research ................................................................................ 356
8.4.1 Theory ......................................................................................................... 356
8.4.2 Implications for practice ............................................................................... 363
8.5 Limitations of the research .................................................................................. 374
8.6 Future research directions .................................................................................. 378
8.7 Beyond the PhD: Development of an online intervention to support women following
TFA ....................................................................................................................... 381
8.7.1 Effectiveness of interventions following bereavement and perinatal loss ...... 381
8.7.2 Development and evaluation of the effectiveness of an intervention to support
women following TFA ................................................................................... 384
8.8 Conclusions ........................................................................................................ 392
References ...................................................................................................................... 395
Appendix I: Critical Appraisal Skills Programme Checklist ......................................... 444
Appendix II: Questionnaire - Study 2b (chapter 5) ........................................................ 446
Appendix III: Questionnaire - Study 4 (chapter 7) ......................................................... 451
Appendix IV: Information sheet - Studies 2a and 2b (chapters 4 and 5) ..................... 458
Appendix V: Information sheet - Study 4 (chapter 7) ................................................... 460
Appendix VI: Consent form - Studies 2a, 2b and 4 (chapters 4, 5 and 7) .................... 462
Appendix VII: Topic guide - Study 2a (chapter 4) ......................................................... 463
Appendix VIII: Topic guide - Study 3 (chapter 6) .......................................................... 465
Appendix IX: Histograms illustrating the data distribution for the Brief COPE and
Short Perinatal Grief Scale - Study 2b (chapter 5) ........................................................ 466
Appendix X: Group differences in levels of perinatal grief by key termination-related
variables based on parametric (t test) and non-parametric (Mann-Whitney U) tests . 469
Appendix XI: Histograms illustrating the data distribution for the Brief COPE, the
Short Perinatal Grief Scale and the Posttraumatic Growth Inventory - Study 4 (chapter
7) ...................................................................................................................................... 470
Appendix XII: Differences in posttraumatic growth based on whether participants had
participated in Study 2b or not....................................................................................... 474
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