Psychological Outcomes of Those Experiencing Early Pregnancy Loss

Home , Acceptance, Acute stress disorder, Doubt, Emotional detachment, Homesickness, Interest (emotion)

Jessie Bendavid

ORCID Identifier: https://orcid.org/0000-0002-4216-7437

Submitted in total fulfilment of the requirements of the degree of Doctor of Philosophy

April 2019

Melbourne School of Psychological Sciences

Faculty of Medicine, Dentistry and Health Sciences

The University of Melbourne

Abstract

Early Pregnancy Loss (EPL), a loss occurring before 14 weeks gestation, is a relatively common event, occurring in about 20% of pregnancies. Although many women and their partners do not experience psychological difficulties associated with this loss, a significant minority experience intense and sustained grief, depression and anxiety symptoms. Reliable prevalence rates of serious psychological consequences for women are not well established, and those of partners are largely unknown. Furthermore, it is unclear what factors increase the risk for developing serious psychological symptoms. A range of potential risk factors have been identified, but remain under- researched and have not been rigorously studied. According to Cognitive Behavioural Theory, it is possible that cognitions surrounding the loss may be a particularly relevant risk factor. Yet this topic has rarely been examined and the studies that have are characterised by major methodological shortcomings. Importantly, partners are rarely included in these studies.

This study aimed to determine prevalence rates for grief depression and anxiety over the first three and a half months after EPL. It also investigated cognitions after EPL through the

Common-Sense Model of Illness Representation, and their link with grief, depression and anxiety symptoms. This study included 28 male partners and 68 women diagnosed with EPL who attended the Early Pregnancy Assessment Service at the Royal Women’s Hospital in Melbourne, Australia.

Participants completed self-report measures two weeks (T1), and three months (T2) post-loss. These included the Perinatal Grief Scale, the Centre for Epidemiological Studies-Depression scale, the State

Trait Anxiety Inventory, and the Illness Perception Questionnaire-Revised.

Results showed that the prevalence of grief, depression and anxiety symptoms for women at

T1 were 20.6%, 54.4%, and 52.9%, respectively. For partners, the prevalence rates were 0% for grief,

32.1% for depression, and 25% for anxiety. These rates decreased by T2. Illness perceptions were found to significantly predict grief, depression and anxiety. Unexpectedly, it was often better perceptions of the loss that predicted worse psychological outcomes. These findings provide new 3

information about the experience of EPL and suggest that critical timing for assessment and treatment would be within the first 3 months after EPL. Treatment options, particularly in terms of grief theories presented in the introduction, are discussed. Considering the surprising results and that this is the first study to examine illness perceptions among this sample, replication of these results is needed.

Declaration

This is to certify that:

i) the thesis comprises only my original work towards the PhD

ii) due acknowledgement has been made in the text to all other material used;

iii) and the thesis is fewer than 100 000 words, exclusive of tables, maps, bibliographies

and appendices.

Jessie Bendavid

Acknowledgements

I am incredibly privileged to have received the guidance of two phenomenal supervisors.

Christina, your knowledge in this field, generosity with your time, unwavering support and mentorship have been integral to my completion of this dissertation. Fiona, your wisdom and expertise you have shared with me during my candidature have been inspiring. You have both shaped me into the psychologist and researcher I am today, and for that, I thank you.

Isabel Krug, I am so grateful for your insights, ideas and feedback you have given over the years. I am also very thankful for the practical support offered by Jennifer Boldero. To the entire

CWMH team, especially Lesley Stafford and Angela Komiti, your views on this project have been most appreciated. Rebecca Cockburn, thank you so much for your support with the recruitment process.

This thesis would not be possible without the contribution of the EPAS team. Patricia Moore, thank you so much for providing access into EPAS, for donating your time to this project and for your input into this study. To Mary and Geraldine, you went above and beyond to recruit participants for this project, showing your passion for your job and care of your patients.

I am very lucky to have had the support of friends and family from Montreal and Australia throughout this process. Marcelo, you have been there for the highs and lows and have been my cheerleader the whole way through. I am so glad to say that we can be parents at the same time again and look forward to lots of family time together. To my children – Harper, Jake and Reagan, thank you for making me a mom and giving me a new perspective on this topic. Jake, your occasional disruptions to my writing process for some delicious hugs were much appreciated and Harper, I hope one day you can do your own “GhB”, if you so choose. Reagan, thanks for giving me a surprising reason to try get this thesis finished. I am very grateful for your arrival. Laura and Mike, thanks for taking an interest in what I do and the laughs along the way. Solange, Eliel, Cris, Rene and

Fernanda, your help watching the kids so I could complete this thesis, feeding me, and giving me 6

some much-needed rest have been incredibly necessary. Ely, Jack, Jaime and Marissa, you have given me sanity and balance during this and all times in my life. To Caitlin, Carmen, Chaille, Emily,

Olivia and Tamsyn – you have shared all parts of this experience with me and your support through it has been such a comfort. Thank you all.

Finally, I am extremely grateful to the participants of this study. They donated their time during a stressful period in their lives to take part in this research and provided in depth and personal insights into their experience. This project would not have been possible without their generous contribution.

Table of Contents

Abstract ...... 2

Declaration ...... 4

Acknowledgements...... 5

Table of Contents ...... 7

List of Tables ...... 13

List of Figures ...... 17

Chapter One: Introduction ...... 18

1.1 Research on the Psychological Sequelae after EPL ...... 18

1.2 Risk Factors for the Development of Psychological Distress After Perinatal Loss ...... 20

1.3 Cognitions in Relation to Psychological Distress After Perinatal Loss ...... 20

1.4 Aims of the Study ...... 21

1.5 Outline of the Dissertation ...... 22

Chapter Two: Introduction to Early Pregnancy Loss ...... 23

2.1 Overview ...... 23

2.2 Key Terms ...... 23

2.2.1 Perinatal loss...... 23

2.2.2 Miscarriage...... 24

2.2.3 Ectopic pregnancy...... 25

2.2.4 Molar pregnancy...... 25

2.2.5 Anembryonic pregnancy (blighted ovum)...... 25

2.2.6 Stillbirth...... 25

2.2.7 Early pregnancy loss...... 25

2.3 Scientific and Societal Views of EPL ...... 26

2.4 The Subjective Experience of Perinatal Loss ...... 26 8

2.5 Unique Features of Early Pregnancy Loss ...... 29

2.6 Prevalence of EPL ...... 30

2.7 Aetiology of EPL ...... 31

2.8 Symptoms and Diagnosis ...... 32

2.9 Medical Treatment of EPL ...... 33

2.10 Possible Consequences ...... 33

2.11 Summary ...... 35

Chapter Three: Anxiety and Depression Following Early Pregnancy Loss ...... 36

3.1 Introduction ...... 36

3.2 Methodological Issues ...... 36

3.3 Anxiety After EPL ...... 37

3.4 Prevalence of Anxiety Symptoms in Women ...... 39

3.5 Duration and Course of Anxiety Symptoms ...... 49

3.6 Anxiety Disorders ...... 49

3.6.1 Obsessive-compulsive disorder (OCD)...... 50

3.6.2 Acute stress disorder and post-traumatic stress disorder...... 53

3.6.3 Generalized anxiety disorder (GAD) and anxiety disorder not otherwise specified (NOS). . 54

3.6.4 Panic Disorder...... 55

3.6.5 Phobic disorders...... 55

3.7 Depression after EPL ...... 55

3.8 Prevalence of Depressive Symptoms in Women ...... 56

3.9 Course and Duration of Depressive Symptoms in Women...... 57

3.10 Mood Disorders ...... 58

3.11 Comparison of Anxiety and Depressive Symptoms ...... 69

3.12 Anxiety and Depression in Partners ...... 69

3.13 Conclusion ...... 71 9

Chapter Four: Grief Following Perinatal Loss ...... 75

4.1 Overview ...... 75

4.2 Defining Major Concepts Relating to Grief ...... 75

4.3 Theoretical Perspectives on Coping with Bereavement ...... 79

4.3.1 General grief theories: phases, stages, and tasks...... 80

4.3.2 The specific issue of grieving parents...... 84

4.3.2.1 The two-track model...... 85

4.3.3 Specific Coping with Bereavement Models: Cognitive Process Models Involved in Grieving ..

...... 86

4.3.3.1 Rumination...... 86

4.3.3.2 Positive psychological states...... 88

4.3.3.3 Confrontation and avoidance...... 88

4.3.4 General life event theories: the role of traumatic experiences and stress ...... 89

4.3.4.1 Trauma theory...... 89

4.3.4.2 Cognitive stress theory and the revised coping model...... 90

4.3.5 An integrative model: The dual process model of coping with bereavement...... 93

4.4 Grief Symptoms After Perinatal Loss ...... 96

4.4.1 Prevalence of grief symptoms...... 97

4.4.2 Course and duration of grief symptoms...... 98

4.5 Conclusion ...... 100

Chapter 5: Risk Factors for Psychological Distress after Perinatal Loss ...... 106

5.1 Introduction ...... 106

5.2 Demographic Factors ...... 106

5.2.1 Maternal age...... 106

5.2.2 Education and occupational status...... 107

5.2.3 Marital status and quality...... 108 10

5.2.4 Conclusion...... 109

5.3 Psychiatric History ...... 109

5.4 Pregnancy-Related Factors ...... 109

5.4.1 Attitude toward the pregnancy...... 109

5.4.2 Gestational age...... 110

5.4.3 Role of ultrasound examination...... 111

5.5 Reproductive History ...... 112

5.5.1 Prior reproductive losses...... 112

5.5.2 Infertility...... 112

5.5.3 Presence of living children...... 113

5.6 Medical Treatment ...... 114

5.7 Conclusion...... 116

Chapter Six: Cognitive Factors and Psychological Distress after Perinatal Loss ...... 118

6.1 Overview ...... 118

6.2 Information About the Cause of the Loss and Cognitive Factors ...... 119

6.3 The Common-Sense Model of Illness Representation ...... 122

6.4 Illness Perceptions and Psychological Impact ...... 125

6.5 Conclusion...... 126

Chapter Seven: Rationale and Aims ...... 128

7.1 Rationale ...... 128

7.2 Aims and Hypotheses ...... 129

Chapter Eight: Methods ...... 131

8.1 Overview ...... 131

8.2 Participants ...... 131

8.3 Measures ...... 131

8.3.1 Demographics...... 131 11

8.3.2 Grief...... 132

8.3.3 Depression...... 132

8.3.4 Anxiety...... 133

8.3.5 Illness perceptions...... 133

8.4 Procedure ...... 135

8.4.1 Recruitment procedure...... 135

8.4.2 Two weeks after EPL – T1...... 136

8.4.3 Three months after EPL – T2...... 136

8.4.4 Delayed responses...... 136

8.5 Ethical Considerations ...... 136

8.6 Intended Statistical Analysis ...... 137

Chapter Nine: Results ...... 138

9.1 Overview ...... 138

9.2 Data Preparation and Questionnaire Completion Rates ...... 138

9.3 Sample Characteristics ...... 138

9.3.1 Characteristics of the sample at time 1...... 138

9.3.1.1 Reproductive history and current loss (T1)...... 141

9.3.2 Characteristics of the sample at Time 2...... 144

9.4 Aim 1: Determining the Prevalence and Course of Grief, Depression and Anxiety for

Women and Partners at T1 and T2 ...... 147

9.4.1 Prevalence for women at T1 and T2...... 147

9.4.2 Prevalence for partners at T1 and T2...... 147

9.4.3 Course of grief, depression and anxiety for women...... 148

9.4.4 Course of grief, depression and anxiety for partners...... 149

9.5 Aim 2: Predicting Psychological Distress from Illness Perceptions for Women at T1 and T2 ...

...... 150 12

9.5.1 Preparation of data and control variables...... 150

9.5.2 Predictors of psychological distress in women at T1...... 150

9.5.3 Predictors of psychological distress in women at T2...... 155

9.5.3.1 Summary of results for Aim 2...... 159

9.6 Aim 3: Predicting Psychological Distress from Illness Perceptions for Partners at T1 and T2 ..

...... 159

9.6.1 Predictors of psychological distress in partners at T1...... 159

9.6.2 Predictors of psychological distress in partners at T2...... 163

9.6.2.1 Summary of results for Aim 3...... 164

9.7 Chapter Summary ...... 164

Chapter 10: Discussion ...... 166

10.1 Overview ...... 166

10.2 Summary of the Findings ...... 166

10.2.1 Prevalence and course of grief, depression and anxiety...... 166

10.2.2 Illness perceptions and psychological distress...... 170

10.3 Strengths and contributions of this study ...... 176

10.4 Limitations ...... 178

10.5 Clinical Implications ...... 181

10.6 Future Directions ...... 183

10.7 Conclusion ...... 186

References ...... 188

Appendix A: Questionnaire Materials ...... 222

Appendix B: Ethics Approval ...... 259

Appendix C: Preliminary Analyses and Results ...... 260

List of Tables

Table 3.1 Prevalence and Course of Anxiety Symptoms after Pregnancy Loss ...... 40

Table 3.2 Rates of Anxiety Disorders associated with Pregnancy Loss ...... 51

Table 3.3 Prevalence and Course of Depressive Symptoms Associated with Pregnancy Loss ...... 59

Table 3.4 Rates of Mood Disorders associated with Pregnancy Loss ...... 73

Table 4.1 Prevalence and Course of Grief Symptoms after Perinatal Loss ...... 102

Table 9.1 Demographic Characteristics for Women (n = 68) and Partners (n = 28) – T1 ...... 139

Table 9.2 Reproductive Characteristics for Women and Partners at T1 ...... 142

Table 9.3 Characteristics of this Pregnancy Loss for Women and Partners at T1...... 143

Table 9.4 Sample Characteristics of Women and Partners at T2 ...... 145

Table 9.5 Prevalence of Grief, Depression and State Anxiety at T1 and T2 for Women ...... 147

Table 9.6 Prevalence of Grief, Depression and State Anxiety at T1 and T2 for Partners ...... 148

Table 9.7 McNemar’s Test of Difference of Matched Percentages (T1 – T2) for Women ...... 149

Table 9.8 McNemar’s Test of Difference of Matched Percentages (T1 – T2) for Partners ...... 149

Table 9.9 Multiple Regression Predicting Grief from Illness Perceptions and Trait Anxiety for Women –

T1 ...... 151

Table 9.10 Coefficients of Predictors of Grief for Women – T1 ...... 151

Table 9.11 Multiple Regression Predicting Depression from Illness Perceptions and Depression –

Women T1 ...... 152

Table 9.12 Coefficients of Predictors of Depression for Women – T1 ...... 153

Table 9.13 Multiple Regression Predicting State Anxiety from Illness Perceptions and Trait Anxiety for

Women - T1 ...... 154

Table 9.14 Coefficients of Predictors of State Anxiety for Women – T1 ...... 154

Table 9.15 Multiple Regression Predicting Grief from Illness Perceptions and Trait Anxiety for Women

– T2 ...... 155 14

Table 9.16 Coefficients of Predictors of Grief for Women – T2 ...... 156

Table 9.17 Multiple regression predicting depression from illness perceptions and trait anxiety for

women at T2 ...... 157

Table 9.18 Coefficients of Predictors of Depression for Women – T2 ...... 157

Table 9.19 Multiple Regression Predicting Anxiety from Illness Perceptions and Trait Anxiety for

Women – T2 ...... 158

Table 9.20 Coefficients of Predictors of State Anxiety for Women – T2 ...... 158

Table 9.21 Multiple Regression Predicting Grief from Illness Perceptions and Trait Anxiety for Partners

– T1 ...... 160

Table 9.22 Coefficients of Predictors of Grief for Partners – T1 ...... 160

Table 9.23 Multiple Regression Predicting Depression from Illness Perceptions and Trait Anxiety for

Partners – T1 ...... 161

Table 9.24 Coefficients of Predictors of Depression for Partners – T1 ...... 162

Table 9.25 Multiple Regression Predicting State Anxiety from Illness Perceptions and Trait Anxiety for

Partners – T1 ...... 162

Table 9.26 Coefficients of Predictors of State Anxiety for Partners – T1 ...... 163

Table C.1 ANOVA for Multiple Regression Predicting Grief from Illness Perceptions, for Women – T1

...... 260

Table C.2 Model Summary of Multiple Regression Predicting Grief from Illness Perceptions, for

Women – T1 ...... 260

Table C.3 Coefficients of Illness Perceptions Predicting Grief for Women – T1 ...... 261

Table C.4 ANOVA for Multiple Regression Predicting Grief from Age, Number of Children and Illness

Perceptions, for Women – T1 ...... 261

Table C.5 Model Summary of Multiple Regression Predicting Grief from Age, Number of Children and

Illness Perceptions, for Women – T1 ...... 262 15

Table C.6 Coefficients of Age, Number of Children and Illness Perceptions Predicting Grief for Women

– T1 ...... 262

Table C.7 ANOVA for Multiple Regression Predicting Depression from Age, Number of Children and

Illness Perceptions, for Women – T1 ...... 263

Table C.8 Model Summary of Multiple Regression Predicting Depression from Age, Number of

Children and Illness Perceptions, for Women – T1 ...... 263

Table C.9 Coefficients of Age, Number of Children and Illness Perceptions, Predicting Depression for

Women – T1 ...... 264

Table C.10 ANOVA for Multiple Regression Predicting State Anxiety from Age, Number of Children

and Illness Perceptions, for Women – T1 ...... 265

Table C.11 Model Summary of Multiple Regression Predicting State Anxiety from Age, Number of

Children and Illness Perceptions, for Women – T1 ...... 265

Table C.12 Coefficients of Age, Number of Children and Illness Perceptions Predicting State Anxiety

for Women – T1 ...... 266

Table C.13 Best Subsets Regression Predicting Grief from Illness Perceptions and Trait Anxiety for

Men – T2 ...... 267

Table C.14 ANOVA for Multiple Regression of Grief Predicted from Control and Consequences for Men

– T2 ...... 268

Table C.15 Model Summary of Multiple Regression Predicting Grief from Control and Consequences

for Men – T2...... 268

Table C.16 Coefficients of Predictors of Grief for Men – T2 ...... 268

Table C.17 Best Subsets Regression Predicting Depression from Illness Perceptions and Trait Anxiety

for Men – T2...... 269

Table C.18 ANOVA for Multiple Regression of Depression Predicted from Trait Anxiety and Coherence

for Men – T2...... 270 16

Table C.19 Model Summary of Multiple Regression Predicting Depression from Trait Anxiety and

Coherence for Men – T2 ...... 270

Table C.20 Coefficients of Predictors of Depression for Men – T2 ...... 270

Table C.21 Best Subsets Regression Predicting State Anxiety from Illness Perceptions and Trait Anxiety

for Men – T2...... 271

Table C.22 ANOVA for Multiple Regression of State Anxiety Predicted from Trait Anxiety for Men – T2

...... 272

Table C.23 Model Summary of Multiple Regression Predicting State Anxiety from Trait Anxiety for

Men – T2 ...... 272

Table C.24 Coefficients of Predictors of State Anxiety for Men – T2 ...... 272

List of Figures

Figure 6.1. The Common-Sense Model of Illness Representation ...... 127

Figure 9.1. Number of participants with pregnancy losses by weeks of gestation ...... 142

Chapter One: Introduction

This thesis examines heightened levels of grief, depression and anxiety symptoms, referred to henceforth as “psychological distress” in women experiencing early pregnancy losses (EPL), or losses occurring prior to 14 weeks gestation, and their partners. The lack of research on EPL in the social sciences in general, and especially with respect to mental health, led to the formulation of the research questions that are addressed. The main questions are: what is the prevalence of psychological distress in this population? And why is it that some people experience poorer psychological well-being after EPL? This introductory chapter will contextualize the problem within the literature and outline the structure of the thesis.

1.1 Research on the Psychological Sequelae after EPL

In general, the topic of EPL, usually studied under the terms “miscarriage” and “perinatal loss”, and its effect on mental health have been neglected in the literature. This is surprising considering that EPL is a relatively common event, occurring in around 15-20% of pregnancies, and is the most prevalent of all perinatal losses. One of the first references to possible psychological harm stemming from miscarriage in a scientific context was an article published in 1964, in which the author noted the grief, anger, guilt and fear that women feel (Cain, Erickson, Fast, & Vaughan, 1964).

Yet, this topic only began to receive attention from researchers in the 1980s, with a growth of interest since the 1990s. There are several factors that likely explain this lack of research. The medical perspective on miscarriage has historically been that EPL is not rare, and is a positive thing because it is nature’s way of removing a collection of malformed cells (Reinharz, 1988). In other words, EPL is a self-correcting mechanism in the mother’s body. This sentiment is reflected in the numerous studies examining the medical experiences of women and partners after perinatal losses that revealed that often, the negative psychological aftermath for parents was not considered a core issue by the medical community (see Geller, Psaros, & Kornfield, 2010 for review). This subject will be elaborated on in Chapter 5. Recently, though, there has been a shift toward ensuring better care for those experiencing perinatal losses, evidenced by increased research on how to improve hospital 19

care of patients with pregnancy losses (Corbet-Owen & Kruger, 2001; Evans, Lloyd, Considine, &

Hancock, 2002; Geller et al., 2010; Sehdev, 2000). At a societal level, discussing losses occurring early in a pregnancy in particular, was, and to a large extent, is still considered taboo (Earle, Foley,

Komaromy, & Lloyd, 2008). Within the research community, the emphasis on ensuring pregnancy success rather than focussing on what went wrong with pregnancy failures has also been blamed as a cause of overlooking this topic (Earle et al., 2008; Reinharz, 1988). Furthermore, traditional models of grief emphasised detaching from the deceased and moving forward, a sentiment historically echoed by healthcare professionals (Earle et al., 2008; Hughes & Riches, 2003).

Strengthening of the feminist movement, and changes within the medical community and societal views have led to increased attention on the mental health consequences of perinatal losses

(Layne, 1990). This shift in attention to the mental health of women post-EPL has shown that there is a wide range of possible reactions to the loss. While some feel guilt, and shame, others may feel relief and hopeful about the future, others still may feel ambivalent about the pregnancy and the loss. Even though there has been an increased focus placed on the women’s experiences, the same consideration has not been accorded to partners.

Partners have been seriously neglected in the perinatal loss literature. This is perhaps not surprising given that even research on the women experiencing the loss is limited. In addition, there was a historical perception that male partners did not bond with the baby as much as the mother

(Conway & Russell, 2000; Duncan, 1995). Partners are placed in a unique position in the context of

EPL. They are not the patient directly experiencing the medical aspects of a pregnancy loss, yet they are the parent of the unborn child (Miron & Chapman, 1994). Furthermore, a handful of studies suggest that partners may be at an increased risk of developing psychological distress post-EPL as they feel the need to act as the carer of the mother of the lost child and in doing so, may deny their own feelings and delay grieving the loss (Murphy, 1998; Stinson, Lasker, Lohmann, & Toedter, 1992).

Thus, partners may be especially vulnerable to psychological distress after EPL. 20

The research to date suggests that the majority of women and their partners experiencing

EPL do not develop intense and long-term psychological distress. Yet, there appears to be a significant subgroup of this population that experiences sustained and increased levels of grief, depression and anxiety symptoms. Thus far, research into how many women and partners experience these symptoms over time is limited and has been fraught with various methodological issues, leaving the picture of prevalence and course unclear. This is particularly true for partners. An important question yet to be addressed arises from the observation that not all individuals experience psychological distress: namely, why do some adjust well to the loss while others do not?

1.2 Risk Factors for the Development of Psychological Distress After Perinatal Loss

It is unclear why some people are more negatively affected by EPL, while others appear to handle the loss well. Although few studies have attempted to unravel this problem, several risk factors have emerged from the literature that have been linked with increased psychological distress after perinatal loss. These include demographic factors, psychiatric history, pregnancy-related factors, reproductive history and medical treatment (Klier, Geller, & Ritsher, 2002). The impact of most of these risk factors on psychological distress, however, remains unclear. They have been under-researched and most studies that do examine them have not been methodologically sound.

They often use small sample sizes, with diverse pregnancy-related factors (e.g. history of prior loss and gestational ages), and use varying methodologies, making comparison between studies difficult.

Moreover, few studies have examined the role of risk factors on partners.

1.3 Cognitions in Relation to Psychological Distress After Perinatal Loss

A potential risk factor rarely studied is that of cognitions after the loss. Cognitions are known to play an important role in the development and maintenance of many health conditions (Knoop,

Van Kessel, & Moss-Morris, 2012). Yet, there is little research on how cognitions impact adjustment after EPL. Understanding individuals’ thoughts about EPL could provide an important avenue toward determining who may be at risk for developing psychological distress. According to cognitive behavioural theory, cognitions precipitate and perpetuate psychological and emotional reactions. 21

Therefore, it is possible that changing these cognitions could inform interventions that result in improved mental health. Furthermore, findings from this line of research could be used to identify those at risk of psychological distress and to develop treatments to help individuals experiencing symptoms.

Several researchers have reported that wanting to receive information about the cause of the loss is a common finding among those experiencing pregnancy losses (Lasker & Toedter, 1994;

Tunaley, Slade, & Duncan, 1993). This information has come primarily from exploratory studies rather than this being a key aim of research. Although information about these causal attributions is useful, there may be a host of other potential thoughts that may be relevant to the development and maintenance of psychological distress after EPL. It remains equivocal whether attributing the cause of negative events to the self or others is beneficial.

The current body of research on cognitions post-EPL is very small and is characterised by methodological shortcomings. The majority of studies use diverse and poorly validated measures, and the key terms used are not sufficiently operationalised. This line of research is based on an unclear empirical foundation as it is not known whether attributing negative events inwardly or outwardly is less harmful. Furthermore, the study of cognitions after EPL is narrow in its focus.

Specifically, studies mainly investigated attributional thinking, or thoughts about the causes of the loss (Lasker & Toedter, 1994; Tunaley et al., 1993). In order to gain a broader understanding of thoughts after EPL, the widely accepted Common-Sense Model of Illness Representation (CSM) is a useful model through which different domains of cognitions can be examined. Not only would this model contribute a sound empirical foundation to the study of cognitions, but it would also be useful for using a higher quality measure to examine thoughts, through the well-validated and highly used tool, the Illness Perception Questionnaire-Revised.

1.4 Aims of the Study

In summary, there has been a paucity of research on the psychological consequences of EPL.

There has also been a serious lack of study into the factors that may contribute to the psychological 22

sequelae of EPL. It is not clear why some individuals adjust better than others to EPL. Tenets of CBT maintain that cognitions give rise to emotions. Therefore, exploration of cognitions post-EPL provide a new area of research that may elucidate the reasons for different paths of adjustment.

This study will ascertain prevalence rates of grief, depression and anxiety symptoms, in women and partners experiencing EPL and will determine the trajectory and duration of these symptoms. Furthermore, it will examine the predictive value of numerous cognitive dimensions on the psychological symptoms of depression, anxiety and grief. Specifically, this study will investigate whether illness perceptions predict grief, depression and anxiety.

1.5 Outline of the Dissertation

This thesis begins with an introduction to the current knowledge about EPL and various types of perinatal losses in Chapter 2. A review of the prevalence, course and duration of serious depressive and anxiety symptoms in women and partners experiencing EPL is then presented in

Chapter 3. This is followed by a review of the concept of grief, theories that explain how individuals cope with bereavement and the prevalence, course and duration of heightened grief symptoms after

EPL in Chapter 4. Chapter 5 will outline various risk factors for increased psychological distress after perinatal loss. Chapter 6 will focus on studies examining cognitions after EPL, and the Common-

Sense Model of Illness Representation will be presented as a lens through which to study cognitions in EPL in Chapter 6. Based on the literature review and gaps in the knowledge, the rationale and aims, and hypotheses of the current study will be described in Chapter 7 and the methodology used to test them will be presented in Chapter 8. The results of the study will be described in Chapter 9.

Finally, the discussion in Chapter 10 will interpret the findings in relation to the current research while considering the strengths and limitations of the study. Future directions for research in light of the findings will be presented.

Chapter Two: Introduction to Early Pregnancy Loss

2.1 Overview

This chapter will present some core features of EPL, defined in this thesis as a pregnancy loss occurring before 14 weeks gestation. First, key terms will be defined. Next, the history of societal and scientific perceptions of EPL will be explored. The qualitative experience of perinatal loss will then be reviewed. The prevalence of EPL and its aetiology will be reported, followed by a description of possible symptoms and diagnostic techniques and treatment methods. The chapter will conclude with the potential consequences of EPL.

2.2 Key Terms

Pregnancy losses are most likely to occur early in the pregnancy. EPL is relatively common and can be accompanied by numerous difficulties for women and partners. However, a major obstacle to understanding the psychological impact of these losses is the way in which different terminology is used interchangeably in the literature. It has been argued that these inconsistencies prevent researchers and the public from truly understanding the experience of early pregnancy losses (Wright, 2011). In order to understand the psychological impact of EPL, one must first understand what EPL is. There are various types of losses that occur in the perinatal period. The following section will describe and explain these different types of losses.

2.2.1 Perinatal loss.

Perinatal loss is an umbrella term, which most broadly refers to a loss occurring around birth, ranging from early in the pregnancy until the neonatal stage (Côté-Arsenault, 2003), thus encompassing embryonic, foetal and newborn deaths. The term ‘perinatal loss’ has also been used to refer specifically to losses occurring closer to the expected delivery date, and excluding early pregnancy losses (MacDorman & Kirmeyer, 2009). The exact end date of the perinatal period has also been debated. Perinatal loss has been defined as including deaths of newborns up to seven days old by the World Health Organization, and 28 days old by the National Health Data Dictionary and 24

the Australian Institute of Health and Welfare National Perinatal Epidemiology and Statistics Unit

(see Li, McNally, Hilder, & Sullivan, 2011). Aside from the issue of foetal and newborn age, it is unclear whether perinatal loss is defined by the parents’ intentions. For example, some researchers consider elective abortion as a perinatal loss (Mahan & Calica, 1997), and have focussed on parental psycholoigcal outcomes (Lou et al., 2017; Wool, 2011). Additionally, some researchers do not believe that a death need occur to qualify as a perinatal loss, such as the case of adopting out a child

(Callister, 2006).

2.2.2 Miscarriage.

Miscarriage has also been operationalised differently by various organisations and researchers (Klier et al., 2002). Although there is agreement that miscarriage involves “the spontaneous termination of an intrauterine pregnancy resulting in foetal death”, (Klier et al., 2002), particular features of the foetus and embryo have been used to delineate miscarriage from other types of perinatal losses. Gestational age is one such feature. For example, clinicians often classify a pregnancy ending before 16 weeks gestation as a miscarriage (Shapiro, 1988), while some researchers define a miscarriage as a pregnancy ending before 20 weeks gestation (Shapiro, 1988), while yet other researchers consider pregnancies ending before 27 weeks gestation as a miscarriage

(Neugebauer et al., 1992a). This gestational age range is so great that the terms “early-” and “late miscarriage” have been used to further categorise miscarriages. Another characteristic used to define a miscarriage is the weight of the embryo or foetus. For example, the World Health

Organization (1977) defines miscarriage as “the expulsion or extraction from its mother of an embryo or foetus weighing 500g or less”. This typically corresponds to a gestational age of approximately 22 weeks or less (Weintraub & Sheiner, 2011).

There are several types of miscarriage defined by the Royal College of Obstetricians and

Gynaecologists (1996). In a “complete miscarriage” the embryo and all of the pregnancy tissue have been spontaneously emptied from the uterus. Conversely, in an “incomplete miscarriage” the products of the pregnancy are not completely passed. A “missed miscarriage” occurs when a 25

pregnancy has ended, however none of the pregnancy contents have passed from the uterus.

“Recurrent miscarriage” occurs when a woman experiences three or more consecutive miscarriages

(RCOG, 2003).

2.2.3 Ectopic pregnancy.

Ectopic pregnancy occurs when a fertilized ovum implants outside of the uterus, usually in the fallopian tube. An ectopic pregnancy is not sustainable and is dangerous to the mother’s health.

2.2.4 Molar pregnancy.

A molar pregnancy involves an unusual and rapid growth of part or all of the placenta, resulting in a very large placenta containing a number of cysts. A complete molar pregnancy occurs when an egg with no genetic information is fertilized by a normal sperm. This results in a pregnancy with a placenta but no foetus. A partial molar pregnancy involves two sperm fertilizing an egg, resulting in three sets of genes in a non-viable foetus. Generally, a diagnosis is made as it presents as a miscarriage.

2.2.5 Anembryonic pregnancy (blighted ovum).

As the name suggests, an anembryonic occurs when a fertilized egg attaches to the uterine lining, but an embryo does not develop. The result is an empty placenta.

2.2.6 Stillbirth.

Stillbirth is the birth of a baby who shows no signs of life. While there is no agreed upon cut- off point distinguishing miscarriage from stillbirth, The World Health Organization (2019) defines stillbirth as occurring at or after 28 weeks gestation for international comparison purposes. The

Australian Institute of Health and Welfare uses the cut-off point of 20 weeks gestation or 400 grams in weight (Li et al., 2011).

2.2.7 Early pregnancy loss.

For the purposes of this study, the term early pregnancy loss refers to pregnancy loss occurring before 14 weeks gestation. This gestational age range encompasses the first trimester and is the criterion used by the Early Pregnancy Assessment Service at the Royal Women’s Hospital in 26

Melbourne, where the participants for the current study were recruited. This encompasses various types of perinatal loss; miscarriage is the most common form of EPL; other forms include an ectopic pregnancy, a molar pregnancy and a blighted ovum.

2.3 Scientific and Societal Views of EPL

Historically speaking, the psychological effects of pregnancy loss have been overlooked and research on perinatal loss began with the observation that many women were distressed following neonatal death (Jensen & Zahourek, 1972; Kennell, Styler & Klaus, 1970; Peppers & Knapp, 1980;

Stirtzinger & Robinson, 1989). This largely stems from previous medical and societal views that pregnancy loss was not a significant event (Frost & Condon, 1996; Moulder, 1994). Relatively recently, though, there has been a greater consideration for the potential consequences of pregnancy loss. Not only is this evident by the increase in research on this topic, but by changes in the medical management of early pregnancy loss and by a change in societal views. For example, due to numerous reports documenting dissatisfaction with care, an area of research focussing on improving the emotional support offered to patients in medical settings has emerged (Stratton &

Lloyd, 2008; Tsartsara & Johnson, 2002). Now, parents have legal rights to their unborn foetus or embryo, and these can be discussed with medical professionals. In addition, the formation of organizations like the Stillbirth and Neonatal Death Society (SANDS), offering support to anyone affected by perinatal death, highlights a greater acceptance by society that these losses are considered legitimate, as does the increase in research regarding parental reactions to reproductive losses.

2.4 The Subjective Experience of Perinatal Loss

Research of perinatal loss has provided various accounts of the multifaceted subjective experiences that women and their partners can have. A range of reactions have been described such as shock, surprise, fear, sadness (Abboud & Liamputtong, 2002). Feeling nothing, a loss of control, a sense of injustice and a degree of social awkwardness around family and friends, for example, have also been reported (Giles, 1970; Harris & Daniluk, 2010). Feelings of anger, (Herz, 1984), failure 27

(Hutti, 1992), relief of uncertainty of symptoms and of no longer being pregnant (Madden, 1994) and guilt (Adolfsson, Larsson, Wijma, & Bertero, 2004) have been observed.

In a qualitative study, Maker and Ogden (2003) described the experience of 13 women with first trimester miscarriage who completed semi structured interviews in the three to five weeks after the loss. The authors found that the loss could be conceptualized as a process involving three stages: turmoil, adjustment and resolution. The turmoil stage was defined by feeling unprepared and other negative emotions. This was followed by a period of adjustment including comparing themselves and their situations to others, telling others about their experience and searching for meaning, particularly, in finding out why the loss occurred. Finally, the resolution phase involved a decline in negative feelings, and for some, viewing the loss as a learning experience. Participants described the miscarriage as a learning experience and contextualized it within their past and future. Their responses to the miscarriage were dynamic and fluid, and had changed between over time. The researchers acknowledge the importance of women’s individual life experiences in interpreting the loss. For example, those who already had children described the resolution as positive, while it was perceived as more negative for those who had prior miscarriages.

Another qualitative study by Madden (1994) conducted semi-structured interviews with a sample of 65 women with miscarriages four months after the loss. Gestational ages of the pregnancies were not provided. These women reported that they had felt feelings of sadness, frustration, disappointment and anger immediately following the loss. At the time of interview, the most common feelings reported were hopefulness about future pregnancies and about their lives, sadness and happiness. The results, showing varied reactions to miscarriage, highlight the need for further research into the factors that influence people’s reactions to miscarriage. Research on psychological reactions to negative events demonstrates that individual reactions are dependent on the meaning of the event within the context of one’s life. (Madden, 1994, p.101) notes that from both research and care perspectives, there is a tendency to emphasize the negative impact of miscarriage, which “stereotypes women’s reactions to reproductive issues, ignores the diversity of 28

women’s experiences, oversimplifies the meaning of pregnancy and motherhood in our society, pathologies women by implying that they always fall apart when faced with loss, ignores women’s resilience and ability to recover and reduces pregnancy to a unidimensional experience that fails to reflect the richness of women’s lives”.

The study of the experience of partners of women experiencing a perinatal loss has been neglected, and that of lesbian and bisexual couples, transgender and intersex people, and homosexual males using surrogates, is extremely rare or non-existent. Echoing this, Wilkinson (1987, p.30) stated “the person who is most often forgotten in a family bereaved by a miscarriage is the father”. There are likely several reasons for this phenomenon, including the finding that men have difficulty expressing emotion (Puddifoot & Johnson, 1997), the now outdated assumption that men do not bond with unborn children (Conway & Russell, 2000; Duncan, 1995), or if they do, far less than women, the notion that men are not biologically linked to the pregnancy, and the idea that the loss is not theirs to grieve (Colsen, 2001). Recently though, there has been greater acknowledgement that men are not merely partners of women experiencing perinatal loss, rather, they can have a variety of reactions of their own to the loss.

In fact, there is now evidence that the male experience of perinatal loss can be quite complex, as they often need to manage their own emotions while simultaneously being expected to act as a support for the woman. For example, using a ‘grounded theory approach’ through unstructured interviews, Miron and Chapman (1994) investigated the experience of eight men whose partners had a total of nine miscarriages ranging from four to 16 weeks and one stillbirth. The time between the loss and the interview ranged from two months to two years, though this was not found to influence the results. Four sequential phases of the experience were revealed from

‘recognizing the signs’ of miscarriage, to ‘moving on’. Various emotions like anger, sadness, loss, disappointment, helplessness and relief were reported. The overriding theme that emerged was the partner’s perception of themselves as the supporter. This included supporting their partner directly, and indirectly, for example, by seeking help for them through counselling, for example. 29

The notion of the male partner acting as a supporter of the woman is a common finding

(Black, 1991; Hutti, 1992). Murphy (1998) reported that men felt sadness and a sense of loss and were unsure of how to navigate the experience. While they were dealing with their own feelings about the loss, they felt an expectation and a need to support their partner. Murphy (1998) also found that the men felt that their partners felt the loss more intensely. This finding is in agreement with previous research that in general, reactions to perinatal loss from male partners are less intense and diminish more quickly than women’s reactions (Beil, 1992; Beutel, Willner, Deckardt, Von Rad, &

Weiner, 1996; Black, 1991; Stinson et al., 1992), and that male partners and women recognize this difference in reactions within the couple (Abboud & Liamputtong, 2002; Murphy, 1998). It has been suggested that men’s reactions may seem subdued as the stereotypical behaviour for men is to deny and internalise their emotions rather than expressing them (Stinson et al., 1992).

Although men and women can have similar reactions to perinatal loss, the fundamentally different experiences of perinatal loss for women and men cannot be ignored. For example, women undergo hormonal and physical changes sensations that come with being pregnant. Men have their own unique experiences, such as managing their own feelings while navigating how to support their partner and trying to figure out their place within the medical system (Miron & Chapman, 1994).

This last point is complicated, because even though the woman and partner are both parents of the foetus, the woman is considered the patient, while the partner is not.

2.5 Unique Features of Early Pregnancy Loss

EPL involves several unique features that distinguish it from other types of losses. One such feature is that the parents grieve over a child that they have never met, and who has never lived separate from its mother, but in whom a great deal of love and hope may have been invested.

Furthermore, contrary to other types of losses, there is no “body” to grieve over in EPL. Murphy and

Philpin (2010) described the paradox between the physical experience of early miscarriage compared to the meaning of the loss as women describe the loss in terms of blood and tissue loss rather than as the loss of a discernible baby. The authors note that the loss of a foetus is a source of 30

profound ambiguity as there is uncertainty surrounding its status as a human being and whether it is technically alive or not. Traditionally, parents rarely had funerals or memorial services for miscarried foetuses, though these are becoming more common (Raphael, 1984). The absence of some type of ceremony commemorating the baby is thought to prevent a sense of closure for the family (Raphael,

1984). Furthermore, many couples do not even divulge that they are pregnant to others until after the first trimester, which may lead to private grieving, and may leave the couple feeling socially isolated (Stack, 1980). The often sudden nature of losses during pregnancy leaves no time for anticipatory grieving and can result in feelings of helplessness (Stack, 1980). The mother may feel a literal and figurative sense of emptiness. She may feel as though she failed as a woman and that her body has betrayed her. Additionally, both parents may be feeling guilty and personally responsible for the loss (Herz, 1984; Seibel & Graves, 1980; Toedter, Lasker, & Alhadeff, 1988). Finally, pregnancy loss may result in relationship difficulties if the members of the couple are experiencing

“incongruent grieving”, where members of the couple grieve in different ways (Peppers & Knapp,

1980). These factors are all likely to contribute to the experience of EPL and its impact on psychological well-being.

2.6 Prevalence of EPL

Most studies examining prevalence of pregnancy losses have studied miscarrying women.

The exact prevalence of miscarriage is difficult to ascertain for several reasons. Firstly, as discussed above, there is no agreed upon definition of miscarriage. Therefore, comparing studies using heterogeneous samples yields contradictory prevalence rates. Secondly, there are also practical issues with studying the epidemiology of miscarriage. For example, many miscarriages occur before women realise that they are pregnant. Furthermore, not all women who miscarry seek medical attention (Statistics Canada, 2012), making it difficult for researchers to study these women or estimate the number of these cases. Reflecting these difficulties, national agencies such as the

Australian Bureau of Statistics, the Consultative Council on Obstetric and Paediatric Mortality and

Morbidity, and the Australian Institute of Health and Welfare only report foetal deaths over 20 31

weeks gestation or over 400g in weight. Similarly, many countries restrict research to reliably measured perinatal losses such as stillbirth or induced abortions, overlooking miscarriages occurring early in pregnancy (Statistics Canada, 2012). Unfortunately, this makes it difficult to make international comparisons of the epidemiology of miscarriage (Statistics Canada, 2012).

Despite these obstacles, attempts to determine the prevalence of miscarriage have been made. Some studies have attempted to prospectively study the number of pregnancies that will end in miscarriage, including those that are unrecognised by the parents by testing women’s hormone levels, finding the rate to be above 30% (Wang et al., 2003; Wilcox et al., 1988). Researchers have also used indirect methods, such as mathematical modelling to estimate the prevalence of miscarriage (Hammerslough, 1992; Roberts & Lowe, 1977). Reported prevalence rates of

“diagnosed” or recognised pregnancies range between 10 – 25% (see Athey & Spielvogel, 2000;

Garcıá -Enguıdanos,́ Calle, Valero, Luna, & Domıngueź -Rojas, 2002; Klier et al., 2002; Lok &

Neugebauer, 2007). The American National Institute of Health estimates the miscarriage rate between 15 – 20% based on a study by Wang and colleagues (2003). These estimates translate into about 50 000 miscarriages occurring annually in Australia (National Perinatal Statistics Unit, 1993). It is widely accepted that the majority of miscarriages occur within the first 12 – 13 weeks of pregnancy. The prevalence of other types of early pregnancy loss are rarer. Reliable estimates of ectopic pregnancies are also difficult to ascertain, but are thought to occur in around 2% of pregnancies (Zane, Kieke, Kendrick, & Bruce, 2002).

2.7 Aetiology of EPL

The cause of some forms of EPL are obvious – ectopic pregnancy, molar pregnancy and blighted ovum cannot result in a viable baby. However, many factors have been shown to cause miscarriage. These are usually classified as genetic, endocrinologic, anatomic, immunologic, and microbiologic (Klier et al., 2002). Genetic or chromosomal abnormalities of the foetus or embryo are the most common cause of miscarriage. It has been reported that chromosomal abnormalities account for up to 76.6% of miscarriages (Guerneri et al., 1987). The risk of miscarriage increases with 32

parental age as chromosomal abnormalities are thought to be more likely to occur (see Regan & Rai,

2000). A less common cause of miscarriage occurs when maternal hormone levels prevent the pregnancy from developing normally. Anatomic factors include uterine or cervical abnormalities, such as an abnormally shaped uterus or cervical weakness. A compromised immune system and infection also increase the risk of miscarriage. Other factors contributing to miscarriage include environmental factors such as maternal smoking, caffeine and alcohol consumption, drug-taking, and exposure to teratogens. Maternal mental health prior to pregnancy has also been found to be an independent predictor of miscarriage (Gold, Dalton, Schwenk, & Hayward, 2007). Using a retrospective cohort analysis, this study found that those with affective disorders or substance use disorders were at significantly higher risk for pregnancy loss, even when controlling for health and behavioural risk factors causing foetal deaths. Although these factors may contribute to or be responsible for miscarriage, often, there is no known or identifiable cause and further investigations are not typically undertaken until a woman experiences recurrent miscarriage (Cecil & Leslie, 1993).

There is growing evidence that there is a paternal contribution to the outcome of the pregnancy, such as paternal age (Belloc et al., 2008), however, this area requires more research.

Often, those experiencing EPL never know the cause of the loss. As perinatal loss is not uncommon, medical investigations are generally not performed to identify the cause of the loss. The

Royal Women’s Hospital, for example, has a Recurrent Miscarriage Clinic which treats women after having three consecutive miscarriages. At that point, it is recognized that there may be an underlying cause for the losses. The results for women and partners experiencing EPL can be confusion as they are left to imagine why the loss may have occurred. The impact of the cause of the loss, or lack thereof, will be addressed in depth in Chapter 5.

2.8 Symptoms and Diagnosis

Symptoms of EPL include vaginal bleeding, which may involve passing clots and pregnancy tissue. Women may experience abdominal or lower back pain. Women may also experience 33

cramping, similar to menstrual cramps. Not all women experience the same symptoms. Diagnosis of

EPL is made by a pelvic exam, blood tests measuring hormone levels, and transvaginal ultrasound.

2.9 Medical Treatment of EPL

There are three treatment methods after the diagnosis of EPL. The first is expectant management, otherwise known as the ‘wait and see’ approach. This type of management means that the contents of the uterus are expelled over several days or weeks. Expectant management is not appropriate for women with signs of infection or heavy bleeding.

The second treatment option, known as medical management, involves taking medication to hasten the passing of pregnancy tissue. The medication is given in the hospital, requiring women to stay between four and six hours. Some women may not experience the loss during this time and are discharged, allowing it to progress at home. The medication has side effects including nausea, vomiting, diarrhoea, fever and chills. Some women choosing this option may still need to have surgical treatment if they experience heavy bleeding, infection, or if the pregnancy tissue does not pass.

Surgical treatment or dilation and curettage (D & C) is the third treatment option. D & C is performed in the operating theatre, typically under general anaesthetic. This treatment involves removing the pregnancy tissue through the cervix and takes five to ten minutes. A D & C requires women to remain in the hospital for several hours waiting for and recovering from the procedure.

After treatment, women are encouraged to follow up with their general practitioner.

2.10 Possible Consequences

The experience of perinatal loss can involve numerous, extensive consequences in various domains of life, many of which have been under-researched and are not well understood (Wright,

2011). The loss may result in the couple relationship being affected (Alderman, 1998; Conway, 1992;

Conway & Russell, 2000; G. E. Robinson, Stirtzinger, Stewart, & Ralevski, 1994; Serrano & Lima,

2006). One study examining marital satisfaction found that martial adjustment among women over

30 years old, with living children was lower 6 months post loss (G. E. Robinson et al., 1994). The 34

researchers posited that incongruent coping between men and women may be responsible for this observation. Women may be more inclined to acknowledge their emotions and be more expressive, while men tend to repress these negative feelings, thereby leading the women to feel isolated and less satisfied with their marriage. Preliminary research has addressed the impact on friends, and other family members aside from the parents like the siblings and the grandparents of the lost foetus/embryo (Callister, 2006). For example, young siblings, in particular, may be confused by the concept of a pregnancy loss. Furthermore, they must also face the loss of a new expected sibling and their parents’ sadness (Leon, 1986; Stirtzinger & Robinson, 1989). These findings suggest that the family system may be affected by EPL.

Consequences of EPL may also arise in subsequent pregnancies. Studies of women without prior perinatal loss as comparison groups show that women with a history of perinatal loss experience significantly greater state anxiety, pregnancy-specific anxiety, worry, and depression

(Armstrong, 2002; Bergner, Beyer, Klapp, & Rauchfuss, 2008; Côté-Arsenault, 2003; Franche &

Mikail, 1999; Hill, DeBackere, & Kavanaugh, 2008; Tsartsara & Johnson, 2006). Considering these findings, it is not surprising that prenatal bonding among those experiencing perinatal loss and attachment styles of their children have also been investigated. Côté Arsenault and Donato (2011) describe a phenomenon that they call “emotional cushioning”, whereby women who become pregnant after a perinatal loss fear another loss avoid prenatal bonding to cope with the anxiety and uncertainty about the outcome of the pregnancy. Women using this self-protecting mechanism were also more anxious about the pregnancy. Similar findings have been reported by other researchers

(Armstrong & Hutti, 1998; Janssen, Cuisinier, Hoogduin, & de Graauw, 1996). The result is often a delay in bonding with the foetus (Côté Arsenault & Donato, 2011). Serious implications can stem from this as prenatal bonding has been identified as a factor influencing postnatal infant-mother attachment (Rossen et al., 2016). In fact, some studies have found higher levels of attachment disturbances in children born after a perinatal loss (Heller & Zeanah, 1999). 35

Another potential consequence is that mental health disturbances, experienced by a significant minority of women after perinatal loss, may impact the outcomes of subsequent pregnancies. A review by Alder, Fink, Bitzer, Hösli, and Holzgreve (2007) revealed that elevated levels of depression and anxiety were independent risk factors for adverse foetal, obstetric and neonatal outcomes. Other factors not related to interpersonal relations need to be considered too.

For example, there may be economic and professional consequences in terms of time off work that women and partners take, but this has yet to be investigated (Wright, 2011). There has been a growing interest in the psychological impact of this loss. This area is a core feature of this thesis and will be elaborated on in subsequent chapters.

2.11 Summary

The different types of EPL, particularly miscarriage, which is the most common, have been inconsistently defined. EPL is often encompassed within other types of loss in the literature, such as

‘perinatal loss’, and ‘miscarriage’, which may include late losses. This lack of a clear definition has impinged on the ability to draw clear conclusions from research. This will be shown Chapters 3 and

4. Partially due to the issue with defining early losses, and due to practical issues, rates of miscarriage in particular have also been difficult to establish. Despite this, it is agreed that there is a high rate of miscarriage, occurring in approximately 15-20% of recognised pregnancies. While many possible causes of EPL have been identified, there is often no known cause, leaving the parents unable to understand why the loss occurred. Symptoms of EPL include bleeding and pain and a range of treatment options exist depending on the wishes of the parents and clinical urgency. Many consequences of EPL have been identified. The next chapters will focus on the psychological consequences of EPL, namely anxiety, depression and grief.

Chapter Three: Anxiety and Depression Following Early Pregnancy Loss

3.1 Introduction

The loss of a pregnancy can result in a multitude of psychological reactions for the parents experiencing this loss. Anxiety and depression have been identified as two of the most common ones. In order to gain a full understanding of the psychological and emotional experience of pregnancy loss, it is critical to know the prevalence rates of these disorders and symptoms, how long they last and what their general course is. In this chapter, the topic of anxiety after EPL will be reviewed, including prevalence rates of symptoms and disorders, and the duration and course of symptoms. Research on rates of specific disorders will be summarized. Depression after EPL will also be explored, including symptom rates and their duration and course as well as rates of mood disorders in this population. A section devoted to partners’ experiences with anxiety and depression will be presented and concluding remarks will finish the chapter. This review was conducted by using the terms ‘miscarriage’, ‘ectopic’, ‘perinatal loss’, ‘anxiety’, ‘anxiety disorder’, ‘depression’, ‘mood disorder’ and the names of specific disorders. Articles were also retrieved through the reference lists of relevant articles. Articles were then hand searched for relevance.

3.2 Methodological Issues

The body of literature concerning the prevalence and course of anxiety and depressive disorders and symptoms after EPL is plagued by several key methodological problems, described in reviews by Geller, Kerns, and Klier (2004) and Klier et al. (2002). Firstly, studies often use terms like

‘perinatal loss’ or ‘miscarriage’ the definitions of which differ substantially between studies. While some studies include very early losses, the majority of studies have excluded women with pregnancies of less than 10 weeks gestation. The highest gestational age included is 28 weeks, resulting in a wide gestational age range among studies. Other researchers fail to provide a definition of miscarriage at all, or include only the gestational age range of their sample (Daly, Harte,

O'Beirne, McGee, & Turner, 1996; Janssen et al., 1996). 37

A second methodological inconsistency in the studies described in this chapter is that they differ in their inclusion of obstetric factors and histories. Some studies exclude women with prior pregnancy losses, while others include these women. A small proportion of these studies specifically examine recurrent miscarriage, excluding women with fewer than three miscarriages (Callander,

Brown, Tata, & Regan, 2007; Craig, Tata, & Regan, 2002) and other studies do not report data regarding the sample’s obstetric history at all (Daly et al., 1996).

Perhaps the greatest difficulty in integrating the results from this body of research is the variation in the timing with respect to the initial and follow-up measurements. For example, the timing of the first assessment can occur within the day of D & C (Cecil & Leslie, 1993) to 2.5 months after the pregnancy loss (Janssen et al., 1996). Studies also differ in the length of time that they follow up their samples. The result of these methodological inconsistencies is widely varying prevalence rates. There are, however, some consistent practices between studies. For example, all studies have assessed symptom prevalence with self-report measures, almost always the Hospital

Anxiety and Depression Scale (HADS; Zigmond & Snaith, 1983), typically using the cut-off score of 11.

The above methodological inconsistencies found in the literature make it difficult to compare results across studies.

3.3 Anxiety After EPL

Anxiety can be viewed as an unpleasant emotional state with accompanying cognitive, physical and behavioural elements. Emotional responses include feelings of distress and irritability.

Anxiety-related cognitions such as worry, and thoughts of losing control may dominate one’s thinking (American Psychiatric Association, 2013). Behavioural changes include avoidance of anxiety- provoking triggers and difficulty sleeping (American Psychiatric Association, 2013). Anxiety is also characterized by an array of physical responses including increased heart rate, muscle tension, difficulty breathing (American Psychiatric Association, 2013). Generally, anxiety is considered as an adaptive and normal response to an anticipatory threat; however, when excessive, anxiety can become consuming and overwhelming. 38

Anxiety responses to EPL have been under-researched and not rigorously studied. This is surprising considering the often sudden and unexpected nature of EPL, which can involve frightening symptoms, visits to hospitals and doctors, and significant concerns about health of the foetus and possibly of the mother. It has been suggested that the lack of attention to anxiety may be due to a tendency to conceptualise miscarriage as a loss event, leading to a greater focus on grief and depression (Geller et al., 2004; C. Lee & Slade, 1996). Despite this, the finding that women in the general population, as well as during post-partum period, are more at risk for developing anxiety symptoms and disorders (Farr, Dietz, O'Hara, Burley, & Ko, 2014) and the conceptualization of miscarriage as a traumatic event, have led to an increased interest in anxiety after miscarriage over the past 20 years. Recent studies have considered anxiety from a number of perspectives, including the prevalence and course of both anxiety symptoms and disorders.

Particular themes have emerged regarding the type of anxiety symptoms experienced by those with miscarriage. It appears that trauma symptoms, including intrusion and avoidance are prevalent after miscarriage, and tend to decrease with time (Broen, Moum, Bødtker, & Ekeberg,

2004; Cheung, Chan, & Ng, 2013; C. Lee, Slade, & Lygo, 1996; Farren, 2016). Not surprisingly, pregnancy-related concerns such as fears of future perinatal losses or fears of infertility have also been observed. For example, one study demonstrated that worry about future pregnancy outcome was high among women who experienced miscarriage, and that those who had psychological counselling reported a significant reduction in those worries (Nikčević, Kuczmierczyk, & Nicolaides,

2007). Related to this, anxiety has been studied in the context of the perceived causes of the pregnancy loss, particularly personal compared to medical causes. This topic will be discussed in detail in Chapter 5. A link between anxiety post miscarriage and somatic symptoms has also been suggested (Brier, 2004; Lok & Neugebauer, 2007). Thapar and Thapar (1992) found that six weeks after miscarriage, women showed increased anxiety and somatic symptoms measured by the

General Health Questionnaire (GHQ; Goldberg & Hillier, 1979) compared to pregnant women.

Similarly, Janssen et al. (1996) reported that women who miscarried had greater levels anxiety and 39

of somatization, measured by the Dutch version of the SCL-90 in the six months following the loss compared to women who had given birth to healthy babies. In summary, preliminary evidence suggests that anxiety experienced after pregnancy loss may have certain unique features.

3.4 Prevalence of Anxiety Symptoms in Women

The studies included in this section are those that report prevalence rates. Table 3.1 summarizes fourteen studies and includes relevant information about study design, measures used, and results. The studies consist mainly of longitudinal designs, with miscarriage being the sole loss event assessed in all studies but one, which also included anembryonic pregnancies (Nikčević,

Tunkel, Kuczmierczyk, & Nicolaides, 1999). Most include small sample sizes and varied gestational age ranges. Overall, prevalence rates reported vary widely and integrating these findings is difficult due to the methodological inconsistencies between studies, the inherent complexity of which has been noted in a key review by Geller and colleagues (2004).

Understanding of the relationship between miscarriage and anxiety symptoms has been enhanced through research comparing levels of anxiety symptoms in miscarrying women and other groups. These groups include healthy community-dwelling women, women who are pregnant, those who have elective abortions, and those who have recently given birth. Including various comparison groups helps to build a better understanding of the relationship between specific condition and anxiety symptoms. For example, C. Lee et al. (1996) assessed prevalence rates one week and four weeks after miscarriage reporting rated of 35.9% and 28.2%, respectively. Comparing these rates with community estimates of 7.6%, the researchers concluded that the miscarriage group experienced significantly higher levels of anxiety.

Researchers have also incorporated comparison groups of pregnant women in order to control for possible hormonal changes that occur with pregnancy. Using a longitudinal design, 227 women who miscarried, the majority prior to 20 weeks gestation, were compared with 213 women who delivered live babies (Janssen et al., 1996). The researchers found that the miscarriage group endorsed more symptoms of anxiety than the comparison group at both 2.5 months and six months 40

Table 3.1

Prevalence and Course of Anxiety Symptoms after Pregnancy Loss

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Beutel, 125 consecutive Longitudinal: STAI Immediately after the Anxiety scores were Only participants with Deckardt, von women with MC < 20 immediately MC: depressive reaction - only increased in complete data across Rad, and weeks gestation after MC, 6 12%; combined women immediately all time points used Weiner (1995), compared to PC and months, 12 depressive and grief after the MC as to determine course Germany CS months later reaction - 20%; compared with PC and (total = 32%) the CS

Broen, Moum, Women with MC (n = Longitudinal: HADS N.S.D. on HADS scores Bødtker, and 40) compared with 10 days (T1), 6 between MC and Ekeberg women undergoing months, 2 years, abortion groups; (2005), Norway induced abortion (n 5 years post MC women with MC had = 80) < 13 weeks significantly higher gestation anxiety scores than the general population at T1, but not at the later interviews

Broen, Moum, Women with MC (n = Longitudinal: 10 HADS (CU = 8) 10 days: 32.5% Bødtker, and 40) compared with days, 6 months, 6 months: 15% Ekeberg women undergoing 2 years, 5 years 2 years: 25.6% (2006), induced abortion (n post-MC 5 years: 20.5% Norway = 80) < 13 weeks gestation 41

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Callander et al. 62 women with Cross-sectional HADS (CU = 50% (2007), recurrent MC < 24 (M = 6.45 11) London, UK weeks gestation months since MC)

Cecil and Leslie 50 women with first Longitudinal: STAI State anxiety was Women excluded (1993), North trimester MC immediately elevated soon after from participating if Ireland after D & C, and MC and significantly they had more than 2 23 weeks, 3 declined by 6 months MCs, or if this MC months and 6 was due to ectopic months later

Cordle and 65 miscarrying Cross-sectional HADS (CU = 12 weeks: 10% n.s.d. between scores Prettyman women < 16 weeks (M = 2 years 11) 2 years: 13% at both time points (1994), UK gestation since MC)

Craig et al. 81 women with Cross-sectional STAI 21% (2002), recurrent MC < 24 London, UK weeks gestation 42

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Cumming et al. 432 women with MC Longitudinal: 1, HADS (CU Women 1 month: 28.3% Women: levels of Some prevalence (2007), UK and 254 male 6, 13 months =11) 6 months: around 20% caseness for anxiety rates were not partners < 24 weeks post-MC 13 months: around 15% was significantly explicitly reported gestation (M = 9 Male partners: 1 month: higher at baseline and were estimated weeks, range = 7 – 12.4% than at 13 months from figures 11 weeks) 6 months: around 4% post MC; men: n.s.d. 13 months: around 4% between levels of caseness at baseline and 13 months post MC

Daly et al. 25 male partners of Cross-sectional HADS (CU = 36% Obstetric features, (1996), women experiencing (MC within the 11) including meaning of Dublin, Ireland “spontaneous previous 6 “spontaneous miscarriage” weeks) miscarriage” were not provided

Farren et al. 69 women with Longitudinal: 1, 3 HADS (CU = 1 month: 32% Decrease in symptoms MC and ectopic were (2016), ectopic pregnancy or months post loss 11) 3 months: 20% over time but sig. also compared but London, UK MC under 20 weeks higher than controls at prevalence rates gestation both times were similar

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Janssen et al. 2140 women in first Longitudinal: Dutch version 2.5 months: 22% Overall decrease; MC Prevalence rates for (1996), trimester of within first of SCL-90 group had sig greater other assessment Netherlands, pregnancy, of which trimester, 6th anxiety symptoms at 1 points were not Belgium 227 had MC month of and 6 months than provided (majority < 20 weeks pregnancy, and 1 controls; at 12 and 18 gestation) and 213 month, after months, n.s.d. delivered healthy expected between women with babies delivery date; MC and comparison MC group: group 6, 12, 18 months post-loss Johnson and 384 male partners; Longitudinal: T1 and T2 scores were Both groups were Baker (2004) MC group with loss T1 - at antenatal significantly greater combined and under 24 weeks appt, T2 - at time for the groups than T3 treated as one group gestation (n = 68), of childbirth or ‘normal’ unassisted around the time delivery group (n = of MC (within 3 216) weeks), T3 - 1 year after birth/MC

C. Lee et al. 60 women with MC, Longitudinal: 1 HADS (CU = 1 week: 35.9% N.S. decline in No prior history of (1996), 6 – 19 weeks weeks, 4 months 11) 4 months: 28.2% symptoms MC UK gestation post-MC 44

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Nikčević, 204 women with Cross-sectional HADS (CU = 8; 45% (CU = 8) Tunkel, and MC, 10 – 14 weeks (median = 187 = 11) 23% (CU = 11) Nicolaides gestation days since MC) (1998), London, UK

Nikčević, 143 women 10 – 14 Longitudinal: 4 HADS (CU = 8; Cause for loss found - Tunkel, et al. weeks gestation with weeks, 4 months = 11) 4 weeks: 47% (CU = 8), (1999), anembryonic post-loss 23% (CU = 11); London, UK pregnancy or foetal 4 months: 36% (CU = 8), death 14% (CU = 11); Cause for loss not found - 4 weeks: 66% (CU = 8), 32% (CU = 11); 4 months: 37% (CU = 8), 21% (CU = 11)

Prettyman, 65 women with MC < Longitudinal: 1, HADS (CU = 1 week: 41% Decline and then Cordle, and 16 weeks gestation 6, 12 weeks 11) 6 weeks: 18% increase in symptoms Cook (1993), 12 weeks: 32% UK

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Rowlands and 998 women who Cross-sectional GADS MC group - Age range: 24-31; MC Lee (2009), have ever had a MC inventory: Low: 24.3% group’s prevalence of Australia (< 20 weeks low: < 3 Medium: 33.8% depression was gestation) and 8083 Medium: 4-7 High: 42% significant, however, women who never High: > 8 No MC group - stepwise logistical had a MC Low: 35.5% regression showed Medium: 35.7% that when relevant High: 28.8% variables were considered, there was n.s.d. between groups

Seibel and 93 women Cross-sectional MAACL 51.2% Spontaneous Graves (1980), undergoing D & C for abortion not defined USA “spontaneous abortion”

Thapar and 60 consecutive Longitudinal: HADS Compared to the Thapar (1992) miscarrying women immediately antenatal group, the undergoing D & C, 62 after MC and 6 MC group had consecutive women weeks later significantly higher attending antenatal rates of anxiety at clinic initial interview and 6 weeks later; the median HADS score did not change between assessment points

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Walker and 37 women with MC < Longitudinal, 3 HADS 3 weeks: 50% Anxiety levels Davidson 16 weeks gestation weeks and 3 3 months: 45% remained stable (2001), UK months after loss Note. MC = Miscarriage; PC = pregnant controls; CS = community sample; STAI = State Trait Anxiety Inventory; HADS = Hospital Anxiety and Depression Scale; n.s.d. = no significant difference; CU = cut-off; SCL-90 = Symptom Check List 90; n.s. = not significant; GADS = Goldberg Anxiety and Depression Symptom; MAACL = Multiple Affective Adjective Check List.

follow-up. The comparison group, however, completed the first assessment significantly earlier (M = one month after delivery) than the miscarriage group. At 12- and 18-months follow-up, the two groups were no longer significantly different in terms of mental health symptoms. The researchers also compared the scores of both groups on the Dutch version of the SCL-90 to those of scores for healthy women in the Dutch community, and found that women in the comparison group scored within the normal range, while 22% (n = 49) of miscarrying women scored “high” or “very high” at the first two assessments. Thapar and Thapar (1992) also compared a group of miscarrying women with a group of women in early pregnancy longitudinally. Miscarrying women reported significantly greater levels of anxiety on the HADS within 24 hours of surgical management (n = 60) for the miscarriage, and 6 weeks later (n = 51), compared to the group of pregnant women assessed at initial contact with the antenatal clinic (N = 62) and 6 weeks later (N = 52; P < 0.001). Beutel and colleagues (1995) went a step further by including comparison groups of age matched community women and pregnant women. Within one to two days after miscarrying, women scored significantly higher on the STAI than both comparison groups; however, at the six- and 12-month follow-ups, the group differences were no longer statistically significant in terms of anxiety symptoms.

One research group has compared miscarrying women (n = 40) and women undergoing elective abortion (not due to foetal anomaly; n = 80) prospectively (Broen et al., 2004, 2005, 2006).

Women’s anxiety symptoms were measured by the HADS which was completed at four time points:

10 days, six months, two years and five years after the pregnancy ended. In 2005, the researchers reported that compared with the mean HADS scores of the general population, women who miscarried had significantly higher levels of anxiety and depression at 10 days after the pregnancy loss (32.5% vs 17.9%). The induced abortion group, though, had significantly higher levels of anxiety at all four time points compared with the community sample (37.5%, 47.3%, 31.9%, 34.3% vs 17.9%).

The miscarriage and abortion groups were not found to differ in terms of level of anxiety symptomatology after controlling for possible confounding variables, however, the percentage of

HADS anxiety cases among the abortion group was significantly higher than the miscarriage group at 48

Time 2 (47.3% vs 15%; Broen et al., 2006). Another study, using a cross-sectional design, measured levels of anxiety symptoms among women aged 24-31 who have ever had a miscarriage, found that women who have ever had a miscarriage were significantly more anxious than women who had not

(Rowlands & Lee, 2009). For example, high levels of anxiety were found in 42% of women who had experienced miscarriage, compared with 28.8% of women who had not. When other relevant variables were considered, the difference between groups was not considered significant. The impact of psychosocial variables on psychological distress will be explored in detail in Chapter 5.

Taken together, the data indicate that under one month after miscarriage, the prevalence rate of heightened anxiety symptoms on a variety of measures for females ranges from 32.5% -

51.2% (Broen et al., 2006; C. Lee et al., 1996; Prettyman et al., 1993; Seibel & Graves, 1980; Walker

& Davidson, 2001). One month after pregnancy loss, the prevalence ranges from 23% - 66%

(Cumming et al., 2007; C. Lee et al., 1996; Farren, et al., 2016; Nikčević, Tunkel, et al., 1999).

Prevalence rates range from 10% - 37%, between one and six months after pregnancy loss (Cordle &

Prettyman, 1994; Farren et al., 2016; Janssen et al., 1996; C. Lee et al., 1996; Nikčević, Tunkel, et al.,

1999; Prettyman et al., 1993; Walker & Davidson, 2001). Six months post-loss, the prevalence rate has been reported at 15% - 20% (Broen et al., 2006; Cumming et al., 2007), with one study using a cross-sectional design reporting the prevalence at 23% (Nikčević et al., 1998). Few studies have examined prevalence rates beyond this point. One study reported the prevalence rate at 13 months to be around 15% (Cumming et al., 2007), while two years after the loss significant anxiety symptoms were observed in 13% - 25.6% of the sample (Broen et al., 2006; Cordle & Prettyman,

1994; Cumming et al., 2007). One study assessed the prevalence five years after the loss and found anxiety symptoms to be present in 20.5% of the sample (Broen et al., 2006).

While some of the above studies have included women who have experienced prior miscarriages or perinatal losses, some studies explicitly examine the psychological impact of recurrent miscarriage. Given the distressing nature of having multiple losses, it is possible that this population could have higher rates of anxiety than those experiencing one miscarriage. This area of 49

research is limited, and only three studies investigating anxiety prevalence rates were identified. The studies define miscarriage with a long gestational age range, with the upper limit at 17 - 24 weeks.

Craig et al. (2002) used a cross-sectional design, but did not indicate the length of time between the miscarriage and the assessment, and found the anxiety symptom prevalence rates at 21% measured by the STAI. Another study using a cross-sectional design measuring anxiety symptoms with the

HADS an average of 6 months after the last miscarriage reported that 50% of the sample experienced clinically significant symptoms of anxiety (Callander et al., 2007). Taken together, it appears that recurrent miscarriage may give rise to anxiety symptoms among a high proportion of individuals, but more research is required in order to draw definitive conclusions.

3.5 Duration and Course of Anxiety Symptoms

Only eight studies have examined the longitudinal course of anxiety symptoms and few have performed significance testing to ascertain whether symptoms change with time. This is echoed in a review which stated “there is little data following the natural course of anxiety symptoms…” among women after EPL (Athey & Spielvogel, 2000, p. 65). Despite the fact that 18 years have passed since this review was published, this quote remains relevant. Studies examining anxiety symptom duration and course, summarized in Table 3.1, measured anxiety symptoms using self-report measures, most commonly the HADS and include a variety of assessment points, ranging from immediately after miscarriage to five years later. The studies suggest that immediately after pregnancy loss, anxiety levels are at their highest, and that they may remain high up to six months later (Beutel, Deckardt, et al., 1995; Broen et al., 2005; Cecil & Leslie, 1993; Janssen et al., 1996; C. Lee et al., 1996; Thapar &

Thapar, 1992; Walker & Davidson, 2001). One study found that anxiety “cases” were initially elevated, decreased at six weeks after miscarriage, but increased again at 12 weeks after miscarriage

(Prettyman et al., 1993). To explain this increase, the researchers posited that this may be around the time when women have their first menstrual period after the miscarriage.

3.6 Anxiety Disorders 50

Compared to anxiety symptoms, there has been less research regarding the epidemiology of specific anxiety disorders in women after EPL. Studies identified in the current literature search are presented in Table 3.2

3.6.1 Obsessive-compulsive disorder (OCD).

Rates of OCD in women who miscarry have been explored in two studies with reasonably large samples, but still yielding inconsistent results. One of these studies examined the rates of anxiety disorders among a sample of 229 women who miscarried during the first (n = 156), second (n

= 72) and third trimester (n = 1), and a comparison group of 230 women in the community (Geller,

Klier, & Neugebauer, 2001). Participants were interviewed using the DSM III Diagnostic Interview

Schedule (DIS) within six months after pregnancy loss. Women who miscarried were 8 times more likely to experience a first or recurrent episode of OCD than the community sample, with prevalence rates of 3.5% and 0.4% respectively. The finding that OCD is more common among miscarrying women is in line with results from studies of pregnant and postpartum women that also report elevated rates of OCD (Russell, Fawcett, & Mazmanian, 2013).

In contrast to the above study, Sham and colleagues (2010) reported the incidence of OCD in a sample of 161 Chinese women in Hong Kong over the three months following miscarriage as 0.6%.

Unlike Geller and colleagues’ (2001) study, in which all participants were assessed with a diagnostic interview, only participants who scored highly on the GHQ-12 were given the Structured Clinical

Interview for DSM-IV disorders (SCID; Spitzer, Robert, Gibbon, & Williams, 2002). Furthermore, Sham and colleagues (2010) used a shorter period between initial assessment and follow-up, which may be too short a duration for OCD symptoms to manifest. The authors also suggest that their finding of a lower prevalence of psychiatric disorders in general in their study likely reflects the impact of culture in their sample. It should be noted that OCD is no longer classified as an Anxiety Disorder in the DSM-5, these studies are reviewed here as it was considered an anxiety disorder at the time these studies were published and is still regarded as an anxiety disorder by other standards, for

Table 3.2

Rates of Anxiety Disorders associated with Pregnancy Loss

Study N, sample characteristics, Design Measures Prevalence Comments pregnancy loss terminology Bowles et al. 25 women experiencing “first Prospective pilot SASRQ, At 5 weeks: ASD – 28%; (2006), USA trimester spontaneous study PSD PTSD – 39% abortion”

Engelhard, van 113 women with “pregnancy Longitudinal PTSS PTSD: 1 month – 25%; Definition of pregnancy loss was den Hout, and loss” 4 months – 7% not provided Arntz (2001), Netherlands

Geller et al. 229 women with MC and a Longitudinal DIS OCD: 3.5% compared Participants were assessed (2001), USA comparison group of 230 with 0.4% of community within 6 months of the loss women in the community; women; MC defined as < 28 No increased risk of panic completed weeks disorder, phobic disorders, or agoraphobia

D. T. S. Lee et al. 150 Chinese women living in Prospective, SCID NOS: 1.3% (1997), Hong Hong Kong (M = 10.4 weeks longitudinal Kong gestation)

Study N, sample characteristics, Design Measures Prevalence Comments pregnancy loss terminology Lok et al. (2004), 222 women, 6 weeks after Longitudinal SCID (DSM-III- 1.4% had an anxiety Cases and non-cases did not Hong Kong MC (M = 11 weeks, range = 4 - R) disorder differ in their age and gestation 18 weeks) length at diagnosis; the diagnosis of caseness was not affected by the following variables: a planned pregnancy, childlessness, history of previous MC or medical treatment

Sham et al. 161 Chinese women living in Prospective, SCID OCD: 0.6% Participants were screened, and (2010), Hong Kong; MC defined as longitudinal NOS: 1.2% those at risk completed the Hong Kong under 23 weeks gestation PTSD: 0.6% SCID, and every tenth participant who scored below the screening cut-off

Walker and 34 women with abnormal Prospective, SCID-D ASD: 15% around 3 weeks The term ‘miscarriage’ was not Davidson (2001), ultrasound opting for surgical longitudinal post-loss defined United Kingdom management for MC

Wisner, Peindl, 22 Women with Panic Retrospective Schedule for 9.1% had first lifetime The term ‘miscarriage’ was not and Hanusa Disorder with 45 pregnancies, Affective onset of panic disorder defined (1996), 10 of which ended in MC Disorders and associated with MC Pittsburgh, Schizophrenia Pennsylvania Note. MC = miscarriage; SASRQ = Stanford Acute Stress Reaction Questionnaire; PSD= Posttraumatic Stress Diagnostic Scale; ASD = Acute Stress Disorder; PTSS = Post Traumatic Symptom Scale – Self-Report; DIS = DSM III Diagnostic Interview Schedule; OCD = obsessive compulsive disorder; SCID = Structured Clinical Interview for DSM-III-R; NOS = anxiety disorder not otherwise specified; SCID-D = Structured Clinical Interview for Dissociative Disorders. 53

example the ICD-10. This is also true for Acute Stress Disorder and Post-Traumatic Stress Disorder, which will be reviewed next.

3.6.2 Acute stress disorder and post-traumatic stress disorder.

Given the sudden and potentially distressing nature of pregnancy loss, it is not surprising that researchers have investigated the incidence of stress disorders after miscarriage; however, it was the introduction of the subjective trauma criterion of DSM-IV that allowed the examination of early pregnancy loss and ASD and PTSD. For example, a small prospective pilot study, with 25 participants at time 1 and 19 at time 2, found that 28% of the women experiencing miscarriage met criteria for ASD approximately one week after miscarriage, while 39% of women met criteria for a

PTSD diagnosis five weeks after miscarriage (Bowles et al., 2006). Additionally, women diagnosed with ASD one-week post-miscarriage were significantly more likely to meet criteria for PTSD five weeks after miscarriage. Although this study did not report the gestational age range of the sample, these results suggest that ASD and PTSD may be prevalent disorders for women after miscarriage.

Other studies have reported similar findings. In order to assess the prevalence of ASD,

Walker and Davidson (2001) interviewed a sample of 37 women who had abnormal scans that confirmed nonviable pregnancies and elected to have surgical removal of the pregnancy contents.

Using the SCID-D for DSM IV, they found that six women (15% of the sample) met criteria for ASD.

Interestingly, the researchers may have underreported the prevalence rate, as their calculations were based on the total sample recruited (N = 40), rather than the total number retained and interviewed (N = 37). It should be noted that the interviews were conducted, on average, three weeks post miscarriage; however, the timing of these interviews ranged between two and seven weeks, beyond the time when a diagnosis of ASD can be given. No information was given regarding the number of participants interviewed after four weeks. Furthermore, this study does not provide information regarding the gestational age range of the miscarried foetuses, but does mention that

“miscarriage can be defined as a pregnancy loss in the first 24 weeks of gestation”. 54

The largest study to date of this disorder, conducted by Engelhard and colleagues (2001), used a longitudinal design with over 1370 pregnant women. PTSD symptoms and PTSD diagnosis were examined in the 113 women who miscarried, using self-report measures assessing the level of emotional reaction to the loss, (criterion A2) and the Post Traumatic Symptom Scale – Self-Report to measure symptom presence, while controlling for pre-existing PTSD and depression (Engelhard et al., 2001). One month after the miscarriage, 28 participants (25%) met criteria for PTSD diagnosis, with similar symptom severity to that of other traumatized populations. At four months, the prevalence of PTSD was 7%, and the prevalence of chronic PTSD, defined as persisting for more than three months, was 4%. The authors note, however, that this number may be an underestimate, as the majority of the participants who dropped out of the study met criteria for PTSD diagnosis one month after the miscarriage, and concluded that the true estimate of chronic PTSD may be between

4 - 10%. Their results indicate that increased gestational age length was significantly associated with

PTSD symptom severity at one month. Although the authors reported the mean gestational age at the time of the miscarriage to be less than 12 weeks, the age ranged from 4.9 - 39 weeks. Therefore, it is unclear whether these findings are generalizable to those experiencing EPL.

Not all studies report such high prevalence rates of PTSD. Sham and colleagues (2010), in their previously described study, found that only 0.6% of their sample experienced PTSD three months after miscarriage. As this study used a similar measure and assessed participants at similar time points to those described above, the authors have acknowledged that finding lower prevalence of psychiatric disorders among Chinese women than Western women may be due to cultural differences (Sham et al., 2010).

3.6.3 Generalized anxiety disorder (GAD) and anxiety disorder not otherwise specified (NOS).

To date, studies employing diagnostic tools have not found any occurrence of GAD among women who miscarry (D. T. S. Lee et al., 1997; Sham et al., 2010). The only study to report rates of

Anxiety Disorder NOS among those with pregnancy loss was conducted by Lee and colleagues

(1997). The researchers found that two of the 150 Chinese women (1.3%) assessed using the SCID 55

met criteria for the disorder. Interestingly, these individuals met criteria for GAD aside from the duration criterion, requiring individuals to have the symptoms for over six months. In a study described previously, Sham and colleagues (2010) observed that 1.2% of women were diagnosed with Anxiety Disorder NOS three months after experiencing miscarriage

3.6.4 Panic Disorder.

One small retrospective study has examined the prevalence of Panic Disorder after miscarriage, specifically at first lifetime onset. Wisner and colleagues (1996), assessed 22 women with a history of 45 pregnancies, 22% of which ended in miscarriage. Two of the women experienced a first episode of Panic Disorder within the three months following the loss. The study previously described by Geller and colleagues (2001), found no increased risk for panic disorder among women who miscarried compared with a matched community sample.

3.6.5 Phobic disorders.

The only study to date directly assessing the prevalence of Phobic Disorder after miscarriage, conducted by Geller and colleagues (2001), described above, found no increased risk for first-time or recurrent phobias, Social Anxiety Disorder, or agoraphobia, following miscarriage. This was true in cases with and without comorbid depression. The researchers note that theirs is the only study published to examine the association between phobias and miscarriage and that no other published studies have researched phobias in relation to pregnancy or the postpartum period.

3.7 Depression after EPL

Depression is characterized by low mood and/or anhedonia and involves emotional, cognitive, behavioural and physical changes. Feelings of sadness and guilt, and thoughts particularly related to negative thinking about oneself are typical of depression. Behavioural changes like withdrawal from others and physical changes like feeling tired and sleeping difficulties may also be involved. Suicidal ideation may also be experienced. Depressive symptoms, which can be distressing and debilitating, may be present among individuals who do not meet criteria of depression or a 56

mood disorder. The following will review rates of depressive symptoms and mood disorders among those experiencing EPL.

3.8 Prevalence of Depressive Symptoms in Women

The studies of depressive symptoms, presented in Table 3.3, consist mainly of longitudinal designs, with miscarriage being the sole loss event assessed in all studies but one, which also included anembryonic pregnancies (Nikčević, Tunkel, et al., 1999). The most common measures used to detect depressive symptoms are versions of the Beck Depression Inventory (BDI; A. T. Beck, Steer,

& Brown, 1996), Hospital Anxiety and Depression Scale (HADS; Zigmond & Snaith, 1983), and Centre for Epidemiology Scale – Depression (CES-D; Radloff, 1977). Overall, prevalence rates reported vary widely and integrating these findings is difficult due to the methodological inconsistencies between studies, the inherent complexity of which has been noted in a review by Klier et al. (2002).

Compared to studies of anxiety symptoms, those assessing depressive symptoms generally include higher sample sizes.

Immediately after miscarriage, the prevalence of depressive symptoms for women ranges from 25.3% - 53.7% (Beutel, Deckardt, et al., 1995; Beutel et al., 1996; Garel et al., 1992; Kong,

Chung, Lai, & Lok, 2010; Lok, Yip, Lee, Sahota, & Chung, 2010; Seibel & Graves, 1980). This discrepancy might be explained by the different measures used. While Kong, Chung, et al. (2010) used the BDI, Seibel and Graves (1980) used the Multiple Affective Adjective Check List (Zuckerman

& Lubin, 1965) and Garel et al. (1992) employed clinical interviews. Additionally, the samples of these studies were different in terms of their cultural background and in their treatment plans, with all the women from Seibel and Graves (1980)’s study undergoing dilation and curettage. Between one and four weeks, prevalence rates range from 4% - 36.2% (Broen et al., 2006; Cumming et al.,

2007; Engelhard et al., 2001; C. Lee et al., 1996; Farren et al., 2016; Neugebauer et al., 1992a;

Neugebauer & Ritsher, 2005; Nikčević, Tunkel, et al., 1999; Prettyman et al., 1993).

The prevalence of depressive symptoms ranges from 0% - 35% between six weeks and three months after pregnancy loss (Cordle & Prettyman, 1994; Farren et al., 2016; Janssen et al., 1996; 57

Kong, Chung, et al., 2010; Lok et al., 2010; Neugebauer, 2003; Prettyman et al., 1993). Four months after the loss, depressive symptoms have been found in 0% - 13% of women (Engelhard et al., 2001;

C. Lee et al., 1996; Neugebauer, 2003; Nikčević, Tunkel, et al., 1999). Six months after the loss, depressive symptoms range from 3% - 26% (Broen et al., 2006; Callander et al., 2007; Cumming et al., 2007; Janssen et al., 1996; Kong, Chung, et al., 2010; Lok et al., 2010; Nikčević et al., 1998). It should be noted that although Nikčević et al. (1998) assessed participants at a median of about 6 months post-loss, the time since the loss actually ranged from 19 - 400 days. Longer term outcomes have also been reported, with studies reporting symptom prevalence ranging from 9.3% - 10.3%

(Kong, Chung, et al., 2010; Lok et al., 2010) one year after the loss. Two years after pregnancy loss,

Cordle and Prettyman (1994) reported a prevalence of 0%. In contrast, Broen et al. (2006) found the prevalence of depressive symptoms to be 7.7% two years post-loss, and this remained stable at five years after the loss. It is worth noting that a cross-sectional study found that among a group of women who have ever had a miscarriage, 36.8% had depressive symptoms, which was significantly higher than the 24.6% among the no miscarriage group (Rowlands & Lee, 2009). The difference between groups was no longer significant once a variety of relevant variables, such as education level, and smoking status were taken into consideration. The notion that other variables may contribute to psychological distress will be explored in Chapter 5.

3.9 Course and Duration of Depressive Symptoms in Women

The course of depressive symptoms can be measured by changes in prevalence rates over time, such as the studies described previously, or in terms of changes in mean scores longitudinally.

Studies relating to the course of depressive symptoms can be found in Table 3.3. Taken together, the findings among female samples suggest that depressive symptoms tend to be elevated at the first assessment point after pregnancy loss and decrease with time. It cannot, however, be said with complete confidence when exactly this decrease occurs due to the use of varied timing of symptom measurement between studies. There is some consensus that by six months, levels of depressive 58

symptoms are comparable to controls (Beutel, Deckardt, et al., 1995; Broen et al., 2005, 2006), but this has not been a consistent finding (Beutel et al., 1996).

3.10 Mood Disorders

Mood disorders encompass a range of diagnoses, including Major Depressive Disorder,

Bipolar Disorder, and others. This review is restricted to Major and Minor Depressive Disorders as others, such as Bipolar Disorder, are rarely studied in relation to perinatal loss. Compared to depressive symptoms, there has been less research regarding the specific depressive disorders in women who miscarry. Relevant studies are presented in Table 3.4.

Friedman and Gath (1989) assessed a group of 67 women, the majority of whom experienced first trimester miscarriage. Using the Present State Examination four weeks after the miscarriage, the authors found that 47.7% of the women were considered psychiatric cases and were all classified as having depressive disorders. One study assessed the prevalence of both Major and Minor Depression using the SCID for DSM-IV three months after miscarriage, reporting prevalence rates of 8.7% and 1.2%, respectively (Sham et al., 2010). This study reported that the incidence of depressive disorders overall was 9.8%, as one of the 15 participants had pre-existing depression before the miscarriage (Sham et al., 2010). Garel et al. (1992), however, found a much higher prevalence with 51% of women meeting criteria for Major Depressive Episode using the SCID for DSM-III in the three months after miscarriage. As previously mentioned, cultural differences may be one reason for this large difference. Six weeks after miscarriage, studies report similar findings for the prevalence of Major Depression at 12% (D. T. S. Lee et al., 1997) and 10.8% (Lok et al., 2004).

Within the first 6 months after miscarriage, Neugebauer et al. (1997) reported that the prevalence of

MDD was 10.9%. Compared to the community cohort, who had a prevalence of 4.3%, the researchers calculated that the overall relative risk for an episode of MDD for those experiencing miscarriage was 2.5. During this same time frame, Klier, Geller, and Neugebauer (2000) found the total incidence for Minor Depression was 5.4%, with a relative risk of 5.2 compared to community- dwelling women, irrespective of psychiatric history. 59

Table 3.3

Prevalence and Course of Depressive Symptoms Associated with Pregnancy Loss

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Beutel, 125 consecutive Longitudinal: D-S Immediately after the Immediately after Only participants Deckardt, et miscarrying women, immediately after MC: depressive reaction the MC: MC > CS with complete data al. (1995), under 20 weeks MC, 6 months, 12 - 12%; combined and PC; scores across all time Germany gestation compared to months later depressive and grief points were used decreased in MC CS and PC reaction - 20% to determine (Total = 32%) group at 6 and 12 course of months but were symptoms still > CS

Beutel et al. 56 couples were Longitudinal: D-S Immediately after the Course: women > Only participants (1996), studied shortly after immediately after MC: Women – 29% men at each time with complete data Germany the MC (M = 10 weeks; MC, 6 months, 12 significantly greater than point; Immediately across all time range 6 – 16 weeks), months later after MC, women points were used CS (8%); Men – 10%, and 6 (N = 47) and 12 scored significantly to determine months later (N = 45) n.s.d to CS (7%) higher than CS; at course of 6- and 12-months symptoms

n.s.d to CS; men n.s.d. to CS at all time points

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Broen et al. Women with MC (N = Longitudinal: HADS At 10 days MC > (2005), 40) compared with 10 days, 6 months, CS, n.s.d. at any Norway women undergoing 2 years, 5 years other times; 10 induced abortion (N = days > 5 years 80) < 13 weeks gestation

Broen et al. Women with MC (N = Longitudinal: HADS (CU = 8) 10 days: 27.5% MC group > CS at HADS scores of (2006), 40) compared with 10 days, 6 months, 6 months: 10% 10 days only; no those who Norway women undergoing 2 years, 5 years 2 years: 7.7% differences were dropped out of the induced abortion (N = 5 years: 7.7% found between study were higher 80) < 13 weeks MC and abortion than those gestation group at any time participating at all assessment points Callander et 62 women with Cross-sectional; HADS (CU = 11) 6.5% al. (2007), recurrent MC < 24 (M = 6.45 months London, UK weeks gestation since MC)

Cheung et 150 women, 75 Longitudinal: 1, 4- GHQ Overall decrease al. (2013), conceived naturally, 75 and 12-weeks post with time Hong Kong conceived after assisted MC reproduction with MC < 12 weeks gestation

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Cordle and 65 women with MC < Follow-up study; HADS (CU = 11) 12 weeks: 0% Prettyman 16 weeks gestation (M = 2 years since 2 years: 0% (1994), UK MC), original data at 12 weeks post- loss used for comparison

Craig et al. 81 women with Cross-sectional BDI-II 33% of patients could be (2002), UK recurrent MC < 24 Scores range from classified as depressed weeks gestation 0-63 with with 9.9% of women scores between being moderately 14-21 indicating depressed and 7.4% mild suffering from severe depression; 21 - depression 29 moderate depression and a score of greater than 29 severe depression

Cumming et 432 women with MC Longitudinal: 1, 6, HADS (CU =11) Women 1 month: 10% Women: 1 month Some of these al. (2007), and 254 male partners 13 months post- 6 months: around 4% > 13 months prevalence rates UK < 24 weeks gestation MC 13 months: around 2% Men: n.s.d. are inferred from (M = 9 weeks) Male partners: 1 month: between baseline graphs 4% and 13 months 6 months: around 1% 13 months: around 2%

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Daly et al. 25 male partners of Cross-sectional; HADS (CU = 11) 12% The term (1996), women experiencing MC within the “spontaneous Dublin, “spontaneous previous 6 weeks miscarriage” was Ireland miscarriage” not defined

Engelhard et 113 women with Longitudinal: 1, 4 BDI (CU = 15) Prevalence at 1 month: Rates of The term al. (2001), “pregnancy loss” months post-loss 13% had mild to severe depression (cases) “pregnancy loss” Netherlands depression. did not decline was not defined Higher with those with over time PTSD: 36% cf. non-PTSD cases 6% 4 months: stable rate of 13%. 35% of the PTSD group at 1 month, and 8% of non-PTSD cases

Farren et al. 69 women with ectopic Longitudinal: 1, 3 HADS (CU = 11) 1 month: 16% Decrease in MC and ectopic (2016), pregnancy or MC under months post loss 3 months: 5% symptoms over were also London, UK 20 weeks gestation time but n.s.d to compared but controls at both prevalence rates times were similar

Garel et al. 144 women with MC Longitudinal: Clinical interview Immediately after Paper written in (1992), immediately after Pregnancy loss: 43% French, abstract France MC, and 3 months available in later English. 98 women at T2

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Janssen et 2140 women in first Longitudinal: Dutch version of 2.5 months: 35% Overall decrease. Prevalence and al. (1996), trimester of pregnancy, within first SCL-90 6 months: 26% MC group > course Netherlands, of which 227 had MC trimester, 6th delivery group in Belgium (majority < 20 weeks month of depressive gestation) and 213 pregnancy, and 1 symptoms at 1 and delivered healthy month, after 6 months. At 12 babies expected delivery and 18 months, date; MC group: n.s.d. between MC 6, 12, 18 months group and post-loss comparison

Johnson and 384 male partners. MC Longitudinal: BDI Significant At T2 and T3 Baker group: (n = 68), < 24 T1: at the increase from T1 assessments, those (2004), weeks gestation; antenatal to T2. Scores then individuals in the Australia ‘normal’ unassisted appointment; decreased but MC group had delivery group (n = 216) T2: at the time of remained sig higher stress and childbirth or higher at T3 than depression (T3 around the time of at T1 only) scores MC (3 weeks); than did the birth T3: 1 year after group birth/MC

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Kong, 83 couples with MC < Longitudinal: 3, 6, BDI (CU = 12) Females - immediately Females: Immediately (n = Chung, et al. 24 weeks gestation 12 months post- after MC: 25.3% significant 83) (2010), Hong MC 3 months: 12.3% decrease over 12 3 months (n = 57) Kong 6 months: 17.3% months 6 months (n = 52) 12 months: 10.3% 12 months (n = 39) Males: overall Males - immediately decrease, most after MC: 16.9% significant 3 months: 7% decrease was 6 months: 3.8% within first 3 12 months: 7.7% months. % of females > males at Gender all times except 12 differences were months absent by 12 months

C. Lee et al. 60 women with MC, 6 - Longitudinal: 1, 4 HADS (CU = 11) 1 week: 7.7% Decrease in scores (1996), UK 19 weeks gestation months post-MC 4 months: 5.1% over time but n.s. comparable to CS

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Lok et al. 280 miscarrying women Longitudinal: BDI (CU = 12) Immediately: 26.8%, 3 Overall decrease (2010), Hong < 24 weeks of gestation immediately after, months: 18.4%, 6 with time. High Kong and 150 non-pregnant 3, 6, 12 months months: 16.4%, scorers at T1: women post MC 12 months: 9.3% largest reduction in scores was between T1 and T2. Low scorers at T1: greatest decrease between T3 and T4 months

Neugebauer 114 women at Cross-sectional CES-D (CU ≥ 30) 20.2% of MC group were Adjusted odds of a (2003), USA 6 – 8 weeks after MC highly woman with MC (before 28 completed symptomatic (CES-D > being highly weeks gestation) and a 30), compared with symptomatic on cohort of 318 10.1% among the CES-D was 2.8- community women not community fold that of a recently pregnant women woman without recent loss Neugebauer 232 women within 4 Cross-sectional: CES-D (CU ≥ 30) 36.2% MC cohort was 3.4 et al. weeks of MC (before 26 within 4 weeks of and 4.3 times the (1992a), USA completed weeks), 283 MC; proportion in the pregnant women 85% were pregnant (before 28 weeks interviewed and community completed gestation), between cohorts, 318 community women days 7 and 15 respectively not pregnant within 12 after loss months

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Neugebauer Women with MC, Longitudinal: 2 CES-D (CU not Two weeks after MC Women were and Ritsher before 28 completed weeks, 6-8 weeks, reported; “those 36% of the miscarrying interviewed (2005), USA weeks gestation and 6 months post- highly women were depressed between 1-3 times MC symptomatic”) during this period

Nikčević et 204 women with MC, Cross-sectional HADS (CU = 8; = 15% (CU 8); 3% (CU 11) al. (1998), 10 – 14 weeks gestation (median = 187 days 11) UK since MC)

Nikčević, 143 women 10-14 Longitudinal: 4 HADS (CU = 8; = Cause for MC found Significant Tunkel, et al. weeks gestation with weeks, 4 months 11) 4 weeks: 16% (CU 8); 6% decrease over (1999), UK anembryonic post-MC (CU 11) time pregnancy or foetal 4 months: 6% (CU 8); 1% death (missed MC) (CU 11) Cause for MC not found 4 weeks: 12% (8); 4% (CU 11) 4 months: 5% (CU 8); 0% (CU 11)

Prettyman 65 women with MC < Longitudinal: 1, 6, HADS (CU = 11) 1 week: 22% Overall decrease et al. (1993), 16 weeks gestation 12 weeks post-MC 6 weeks: 8% with time; among UK 12 weeks: 6% those completing questionnaires at all 3 times, cases at week 1 > week 12

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Ridaura, 70 women with a Longitudinal: 1, 6, BDI Significant 71% had loss due Penelo, and perinatal loss (any time 12 months post- decreases to a medical Raich during pregnancy, up to loss between 1, 6- and termination of (2017), 28 days postpartum) 12-months post- pregnancy; Spain loss gestation: M = 22.4 weeks (SD = 5.61). Non-medical termination group that had suffered gestation prenatal death M = 25.7 weeks (SD = 4.77) and 35 (SD = 3.21) in the case of postnatal death

G. E. 39 women with MC Longitudinal: 3, 6, CES-D Depression Only included Robinson et 12 months post- scores were women with no al. (1994), MC elevated at 3 prior history of Canada months, decreased MC; significance at 6 months and testing was not were again done elevated for most women at 1 year

Study N, sample Design Measures Prevalence Course Comments characteristics, pregnancy loss terminology Rowlands 998 women who have Cross-sectional CES-D 10 (CU = MC group: 36.8%, non- Age range: 24-31; and Lee ever had a MC (< 20 10) MC group: 24.6% MC group’s (2009), weeks), 8083 women prevalence of Australia who never had a MC depression was significant, however, stepwise logistical regression showed that when relevant variables were considered, there was n.s.d. between groups

Seibel and 93 women undergoing Cross-sectional, MAACL 53.7% Graves D & C for “spontaneous immediately after (1980), USA abortion” D & C

Thapar and 60 consecutive women Longitudinal: GHQ, HADS GHQ: significantly Thapar with MC undergoing D immediately after higher rates (1992), UK & C, 62 consecutive MC and 6 weeks of depression MC women attending later > antenatal group antenatal clinic initially and at six weeks; n.s.d found on the HADS Note. MC = miscarriage; CS = community sample; PC = pregnant controls; D-S = Yon Zerssen Depression Scale (Depressivitfits-Skala); n.s.d. = no significant difference(s); > = significantly greater than; HADS = Hospital Anxiety and Depression Scale; CU = cut-off; GHQ = General Health Questionnaire; BDI = Beck Depression Inventory; PTSD = Post Traumatic Stress Disorder; SCL-90 = Symptom Check List 90; n.s. = not significant; CES-D = Centre for Epidemiological Studies Depression. MAACL = Multiple Affective Adjective Check List. 69

Taken together, the limited research in this area suggests that women may be at heightened risk of both major and minor depression after a pregnancy loss. The precise epidemiology is difficult to determine as different assessment times are used and prevalence rates vary widely; however, these studies include relatively homogeneous samples, with most experiencing first trimester pregnancy loss, making comparisons between studies somewhat easier. There is very little information available regarding the epidemiology of minor depression.

3.11 Comparison of Anxiety and Depressive Symptoms

In some studies, levels of anxiety after pregnancy loss have been found to be higher than depression. Prettyman and colleagues (1993), found that within the first week after miscarriage,

41% of women experienced elevated anxiety, while 22% of women experienced depressive symptoms scoring above the cut-off score of 11 on the HADS. By 12 weeks, 32% of women reported significant anxiety symptoms while 6% of women were defined as depression “cases”. C. Lee et al.

(1996) found that for women, anxiety was significantly higher than community sample estimates at one week and four months after miscarriage, whereas depression was not significant at either time point.

3.12 Anxiety and Depression in Partners

The experience of partners of women experiencing perinatal losses in general has been neglected. Research tends to be limited to women’s experiences or to men as part of a couple

(Lasker & Toedter, 1991). Little is known about the nature of anxiety or depression among partners.

There is no information about the prevalence of anxiety or mood disorders in partners after perinatal loss. The following section will review anxiety (Table 3.2) and depressive symptoms (Table

3.4) among partners after perinatal loss.

There is a significant lack of research with respect to partners’ anxiety symptom prevalence rates. To date, only two studies have reported partners’ anxiety prevalence, both using the HADS. A cross-sectional study of partners’ anxiety symptoms within the 6 weeks after miscarriage, which was not defined, revealed a prevalence rate of 36% (Daly et al., 1996). A longitudinal study assessed the 70

trajectory of anxiety symptoms over 13 months among 273 women and 133 men whose partners miscarried prior to 24 weeks gestation (Cumming et al., 2007). The researchers found that 12.4% of the male sample were classified as anxiety ‘cases’ one month after the miscarriage. Unfortunately, the researchers did not provide the exact figures at the six- and 13-month follow-ups, instead representing them graphically. Comparing the HADS scores between men and women, the researchers found that over time “a significantly greater level of adjustment was reported by women, particularly with regards to the resolution of anxiety symptoms” (Cumming et al., 2007, p.

1138). More research is needed to be able to draw clear conclusions. Preliminary evidence suggests that male partners may experience anxiety symptoms, and that their reactions may be comparable to those of the women having miscarriages.

Few studies have explored the duration and course of male partners’ anxiety symptoms.

Johnson and Baker (2004), prospectively studied expectant fathers’ anxiety symptoms using the

STAI. The men were assessed during the pregnancy, at the time of miscarriage, and one year after the loss. The results showed no significant differences in anxiety symptoms at the first two time points, but that one year after the loss, anxiety scores had significantly diminished. Another study found that although men’s anxiety symptoms were lower than their female partners, the males’ symptoms did not improve with time, whereas the women’s did (Cumming et al., 2007). This may indicate that male partners are at risk for chronic low-level anxiety. Aside from the consistent finding that anxiety levels are highest soon after miscarriage, results from this area of research remain equivocal.

As is the case with anxiety symptoms, the prevalence of depressive symptoms among partners is under-researched, with only four studies reporting prevalence rates. Immediately after miscarriage, the prevalence of depressive symptoms in partners has been reported to be 10% by one study (Beutel et al., 1996) and 16.9% by another (Kong, Chung, et al., 2010). Daly et al. (1996) found

12% of men had high levels of depression within the six weeks post-loss. Prior research has shown partners to have prevalence rates of 4% at four weeks (Cumming et al., 2007) and 7% at 12 weeks 71

post-loss (Kong, Chung, et al., 2010). Prevalence rates range from around 1% (Cumming et al., 2007) to 3.8% (Kong, Chung, et al., 2010) six months after miscarriage. It should be noted that the figures obtained from Cumming et al. (2007) were estimated from graphs. One year on, 7.7% of partners had elevated depressive symptoms (Kong, Chung, et al., 2010). From this limited area of research, it appears that male partners may experience lower levels of depression than their female partners.

The duration and course of depressive symptoms in male partners is unclear. Johnson and

Baker (2004) found a significant increase between the time of the antenatal appointment and one year after miscarriage. Other studies suggest that male partners experience a decrease in symptoms over time (Cumming et al., 2007), specifically, that they may experience a significant decline in symptom levels by 3 months (Kong, Chung, et al., 2010).

3.13 Conclusion

The above literature review suggests that for most women, severe depression and anxiety symptoms after pregnancy loss are uncommon. Yet, there is a significant minority of women who experience heightened anxiety and depressive symptoms. Immediately post-loss, prevalence rates ranging from 33% - 50% for anxiety symptoms and between a quarter and half for depressive symptoms have been reported using a variety of methodologies and measures. Although studies have shown that symptom rates decrease with time, some women can still be experiencing symptoms for several months post-loss. This is important to know considering the potential impact this can have on their daily functioning.

Due to the very small body of research, studies of anxiety and mood disorders must be interpreted with caution. There is preliminary evidence that women who experience pregnancy loss may be at an increased risk of developing OCD, ASD/PTSD. Little information is available regarding the rates of other anxiety disorders in this population. Overall, rates of first onset disorders remain largely unknown, leaving a number of unanswered questions as to how this population reacts to EPL.

Further research is required to ascertain rates and courses of symptoms and disorders. Furthermore, 72

future studies should take into account the presence of sub-threshold disorders, which can also cause distress and disability into account.

Partners’ experience of anxiety and depression is under-researched and unclear. They may experience similar rates of anxiety, but lower levels of depressive symptoms compared to their female counterparts. The majority of studies reporting prevalence rates did so incidentally without this being a key aim of their study, highlighting that this aspect of research has, for the most part, been neglected thus far. Rates of specific disorders remains uncertain, due to a lack of study in this area. More research is needed to better understand rates of anxiety and depression among women and partners experiencing EPL.

Table 3.4

Rates of Mood Disorders associated with Pregnancy Loss

Study N, sample characteristics, Design Measures Prevalence Comments pregnancy loss terminology T. Friedman 67 women with “spontaneous Cross-sectional PSE Prevalence at 4 weeks: On all four measures, and Gath abortion”; 61 women had first 47.7% depressive mean scores were (1989) trimester MC, 6 lost the disorders significantly higher pregnancy “early in the second among the 21 women trimester” with a history of prior spontaneous abortion than among the 46 women with no such history

Garel et al. 144 women with MC Cross-sectional – 3 SCID (DSM-III-R) 12 weeks: 51% MDE Although this paper is (1992) months after MC. written in French, it is highly cited and the abstract is available in English

Klier et al. 229 women with MC (nonviable DIS, DSM IV for minor The incidence rates The relative risk for the (2000) intrauterine pregnancy before 28 depressive disorder within the 6 months miscarriage group was completed weeks gestation) over following miscarriage 5.2 times that of two thirds of the pregnancies was 5.4% community women; ended in the first trimester, and among the 10 230 community women not miscarrying women, pregnant in the previous 12 8 had episodes that months developed within the first month following the loss

Study N, sample characteristics, Design Measures Prevalence Comments pregnancy loss terminology D. T. S. Lee 150 Chinese women living in Prospective, SCID (DSM-III-R) 6 weeks: 12% major Of the 18 depressed et al. (1997) Hong Kong; (M = 10.4 weeks longitudinal depression subjects, 12 could be gestation) regarded as having moderate depression

Lok et al. 222 women with MC ≤ 18 weeks Prospective cohort SCID (DSM-III-R) 6 weeks: Major (2004) gestation (M = 11 weeks) study Depression = 10.8%

Neugebauer 229 miscarrying women < 28 Cohort study (within DIS – first or recurring MDE: 10.9% Among women with et al. (1997) completed weeks, and 230 the 6 months following episode of MDD compared with 4.3% of MC, 72% of cases of community women MC) community women; major depressive the overall relative risk disorder began within for an episode of MDD the first month after for women with MC loss; only 20% of was 2.5 community cases started during that period

Sham et al. 161 Chinese women with MC Longitudinal cohort SCID (DSM IV Axis 1 3 months after MC, Participants were (2010) living in Hong Kong (gestational study disorders) MDD: 8.7%; Minor screened, and those at age: M = 9.4 weeks, SD +/- 3.3 Depressive Disorder: risk completed the weeks) 1.2% SCID

Seibel and 93 women undergoing D & C for MAACL 53.7% Graves “spontaneous abortion” (1980) Note: MC = miscarriage; PSE = Present State Examination; SCID = Structured Clinical Interview for DSM-III-R; MDE = Major Depressive Episode; DSM = Diagnostic and Statistical Manual of Mental Disorders; DIS = Diagnostic Interview Schedule; MDD = Major Depressive Disorder; MAACL = Multiple Affective Adjective Check List.

Chapter Four: Grief Following Perinatal Loss

4.1 Overview

This chapter contains four sections. First, definitions of key terms will clarify the topics to be explored. Next, various theoretical perspectives on coping with grief will be presented. Particular attention will be paid to those that may relate to the EPL experience. The chapter will then examine the study of grief in relation to EPL, considering the prevalence, and course and duration of symptoms, and will end with a conclusion, summarizing the findings discussed throughout the chapter.

4.2 Defining Major Concepts Relating to Grief

The scientific study of grief began nearly a century ago with the seminal studies by Freud

(1917) and Lindemann (1944). These early studies examined the process of trying to work through and resolve grief by breaking ties with the deceased. Freud defined mourning as the process of grieving, and in doing so, made a distinction between grief and mourning; however, in subsequent studies, terms like ‘bereavement’, ‘grief’, and ‘mourning’ are often used interchangeably.

Furthermore, many studies lack a clear operational definition of grief altogether (Brier, 2008). For the purposes of this study, bereavement will be defined as the “objective situation of having lost someone significant”, which results in grief, defined as a predominately emotional reaction to the loss of a loved one through death, whereas mourning is the social expression of grief (M. S. Stroebe,

Hansson, Stroebe, & Schut, 2001a, p.6). Importantly, grief is a normal reaction to the loss of a loved one.

It has been argued that grief may be better conceptualized as a complex set of emotions rather than as a single emotion. In an attempt to define typical grief reactions, Prigerson and colleagues (1995; 1999) identified characteristics of grief pertaining to affective, behavioural, cognitive, and physiological reactions. Affective elements include feelings of depression, despair, anger, and hostility. Behaviourally, individuals may experience agitation, fatigue, may cry spontaneously or may be socially withdrawn. Cognitively, they may be preoccupied with thoughts of 76

the deceased, have negative self-judgements, feel hopeless and helpless, and may experience memory and concentration problems. Physiological symptoms include loss of appetite, sleep disturbance, energy loss and exhaustion and somatic complaints. A key feature of grief that has been identified is yearning or pining for the deceased (Maciejewski, Zhang, Block, & Prigerson, 2007).

Evident from this conceptualization of grief is its multifaceted nature.

Further adding to the complexity of defining grief, there are many symptoms that are shared by both grief and depression. For example, a core symptom of both conditions is feeling sad or low; with grief, however, the sadness tends to centre around the loss of the loved one, whereas the feeling of sadness in depression is more global. In addition, atypical symptoms of grief, such as excessive guilt, feelings of worthlessness and suicidal ideation (American Psychiatric Association,

2000) are typical features of depression. Therefore, the overlap of symptoms can make it difficult to distinguish grief and depression. In the case of perinatal loss in particular, the lines between grief and depression can be blurred since perinatal loss may be accompanied by a high levels of guilt and self-reproach, loss of identity (as a mother) and low levels of self-esteem (Frost & Condon, 1996).

There is a lack of clear consensus regarding the features that constitute typical grief reactions (Brier, 2008) and efforts have been made to characterize grief in terms of its abnormal symptoms, as can be seen through its comparison with depression. According to the previous version of the Diagnostic and Statistical Manual (DSM) of Mental Disorders, the DSM-IV TR

(American Psychiatric Association, 2000), grief was not considered a distinct condition, rather it was referenced only in relation to a diagnosis of a Major Depressive Episode (MDE), which involves persistent low mood, anhedonia, and the inability to experience happiness. This low mood is not linked to specific thought content or preoccupations as is the case with grief, rather the low mood is pervasive. Thought content tends to be self-critical and ruminative in nature, and feelings include worthlessness and self-loathing. Thoughts of death centre on ending one’s life to escape the pain of depression. A diagnosis of MDE was not considered appropriate, according to the DSM-IV TR, if the symptoms were better accounted for by bereavement within the first two months after the death of 77

a loved one, and this criterion was known as the “bereavement exclusion”. However, clinicians could make a diagnosis of MDE in people who were grieving if the symptoms persisted for longer than two months after a bereavement or were characterized by marked functional impairment, morbid preoccupation with worthlessness, suicidal ideation, psychomotor retardation or psychotic symptoms (American Psychiatric Association, 2000). In other words, when the grieving became excessive, a diagnosis of depression may have been appropriate.

The latest version of the DSM, the DSM-5 (American Psychiatric Association, 2013), distinguishes grief from MDE describing the central feelings of grief as those of emptiness and loss.

According to the DSM, the trajectory of the dysphoria of grief overall decreases over time but also occurs in waves and is generally associated with thoughts or reminders of the deceased. Grief can involve positive emotions and humour. Thought content often centres on memories and thoughts of the deceased. Self-esteem remains intact, and self-critical thoughts are generally about personal failings in relation to the deceased. Thoughts of death for bereaved individuals are usually in reference to the person who died, or may involve being reunited that person.

The DSM-5 has removed the bereavement exclusion of the DSM-IV TR. Those who had experienced a MDE prior to a loss were found to be at an increased risk of experiencing a recurrent

MDE after a loss and it was argued that the bereavement exclusion had been preventing those individuals from being diagnosed and receiving treatment (Reichenberg, 2013). The DSM-5 includes an explanation of the purpose of the bereavement exclusion in order to aid clinicians in differentiating between grief symptoms and the presence of MDE, while acknowledging that both may be present (Reichenberg, 2013). When grief and MDE occur simultaneously, symptoms may be more severe and may result in worse outcomes, including a greater risk of suicidality and a risk of developing persistent complex bereavement disorder, a Condition for Further Study of the DSM-5

(Reichenberg, 2013). The different criteria used by the DSM-IV TR and DSM-5 reflect the difficulty in defining a normal grief reaction. 78

Numerous definitions of pathological grief have also been proposed by researchers. These types of grief have been defined through observations of patterns of differing intensity and duration of symptoms. For example, delayed grief, sometimes called “inhibited” or “absent” grief, when there is a lack of grieving shortly after a loss, has been found to be predictive of more severe and long- term distress (Bowlby, 1980; Lindemann, 1944; Osterweis, Solomon, & Green, 1984). Not all, however, have found this link (Wortman & Silver, 1989). Recently, prolonged grief, also known as

“complicated grief” and “traumatic grief”, has received increased attention as an effort was made to include Prolonged Grief Disorder (PGD) in the DSM-5 (Prigerson et al., 2009). Researchers noted that although there was an attempt to distinguish grief and depression in the DSM IV-TR, there was no effort made to discriminate normal grief reactions from abnormal ones, despite numerous findings that PGD symptomatology is different from those of DSM-IV TR and ICD-10 depressive disorders

(Prigerson et al., 2009). There are also unique risk factors for PGD that centre around attachment issues to parents and other loved ones (Prigerson et al., 2009). For example, (Vanderwerker, Jacobs,

Parkes, & Prigerson, 2006) found childhood separation anxiety to be significantly associated with later development of PGD, while it was not significantly related to major depressive disorder, PTSD, or GAD in a sample of 283 recently bereaved individuals. The link was independent of education level, relationship to the deceased, history of childhood abuse and psychiatric history. In an attempt to define more severe grief reactions, Prigerson and colleagues (1995; 1999) identified typical characteristics of grief. These relate to affective, behavioural, cognitive, and physiological dimensions. Affective elements include feelings of depression, despair, anger, and hostility.

Behaviourally, individuals may experience agitation, fatigue, may cry spontaneously or may be socially withdrawn. Cognitively, they may be preoccupied with thoughts of the deceased, have negative self-judgements, feel hopeless and helpless, and may experience memory and concentration problems. Physiological symptoms include loss of appetite, sleep disturbance, energy loss and exhaustion and somatic complaints. A key feature of grief that has been identified is yearning or pining for the deceased (Maciejewski et al., 2007). 79

From the above discussion, it is clear that grief is not a simple concept to define.

Furthermore, the body of research has yet to clearly identify abnormal grieving. This is especially important considering that grief itself is a normal and natural reaction, that virtually everyone is likely to experience at some point. The next section will examine different theoretical approaches to bereavement that seek to explain how individuals cope with the loss of a loved one.

4.3 Theoretical Perspectives on Coping with Bereavement

Early grief theories, and key principles like doing “grief work”, proposed by Freud and supported by others like Lindemann, were generally accepted as prescribed ways of grieving.

However, it became evident that there is much individual variation in the ways that people grieve.

This led to the consideration of the relationship between processes used to relieve grief, and the outcomes that follow. The process of grieving then, can be thought of in terms of how an individual copes with the loss and its outcomes (M. S. Stroebe, Hansson, Stroebe, & Schut, 2001b). Not to be confused with symptomatology, outcomes of the loss can encompass health consequences, affective elements such as depression, cognitive aspects like a sense of unreality, interpersonal difficulties, and financial burdens, to name a few. Coping, on the other hand, refers to “processes, strategies, or styles of managing (reducing, mastering, tolerating) the situation in which bereavement places the individual” (M. Stroebe, Schut, & Boerner, 2017b). Coping can be evaluated in terms of the outcomes it produces. In other words, the use of adaptive coping mechanisms would lead to a reduction in the negative consequences of grief (M. S. Stroebe & Schut, 2001b).

Given the considerable consequences that can arise from grief, research has aimed at

“identifying effective ways of coping and to explore cognitive mechanisms underlying adjustment to this stressor” (M. S. Stroebe et al., 2001b). In particular, it has been argued that it is imperative to learn more about the cognitive processes underlying adaptation to loss, a key theme of this thesis.

Before delving into theoretical perspectives of coping with bereavement, it must be noted that grieving and mourning are culturally specific and highly individual. Many factors can impact the way one grieves. These include the circumstances surrounding the loss, such as whether it was an 80

unexpected loss, whether the deceased was young or old, the relationship to the deceased, and the kind of social support one receives. It is critical to note that grief is a normal response to the loss of an emotionally important figure (M. J. Horowitz et al., 1997).

As can be gleaned from the above discussion, grief is extremely complex. It is beyond the scope of this thesis to consider every coping theory that has been developed. However, theories deemed particularly relevant to this thesis will be explored in the subsequent section. The next section has been loosely organised around work by M. S. Stroebe and Schut (2001b) which classified coping theories into four broad categories: general stress and trauma theories, general theories of grief, models of coping specific to bereavement, and integrative theories. They maintain that these theories, including general grief theories and those of related events that are not specific to coping with bereavement, can be evaluated in terms of their capacity to explain the impact and significance of varying ways of coping with bereavement.

4.3.1 General grief theories: phases, stages, and tasks.

In the field of psychology, Freud (1917/1957) was the first to conceptualise grief. He suggested that bereavement could lead to depression, especially if the deceased was ambivalently loved. He argued that “mourners” had to detach their libidinal or emotional energy from the deceased individual and sublimate it into other areas of their lives. Thus, the goal was to detach from the deceased. Freud posited that this “grief work” needed to be actively done by the mourner, although, he never defined precisely what this entailed. If grief work was not done, the result would be a form of pathological grief. Interestingly, Freud’s personal experience with grief after the death of his daughter and grandson contradicted his theoretical position on the subject. In correspondence to a friend, he described being unable to fully detach from them and that this was actually to be expected: “Although we know that after such a loss the acute stage of mourning will subside, we also know that we shall remain inconsolable and will never find a substitute. . . Actually, this is how it should be. It is the only way of perpetuating that love which we do not wish to relinquish” (Freud,

1961, p. 239). Essentially, for Freud, mourning constituted the process and work of grieving. 81

Extending Freud’s concept of “grief work”, the psychiatrist Lindemann (1944) was the first to systematically study grief reactions. In his seminal paper, he interviewed a sample of 101 participants shortly after experiencing a variety of losses including individuals whose relatives died in the hospital, bereaved victims of the Cocoanut Grove fire and their close family members, and relatives of members of the US army. Lindemann reported typical symptoms of acute grief, which included somatic complaints, preoccupation of images of the deceased, guilt, hostility, loss of warmth in other relationships, and changes in behaviour. Lindemann described the course of grief as dependent on the bereaved person’s participation in their “grief work”, detaching from the deceased, learning to live without the deceased and forming new relationships. He also noted that grief may present in different ways. For example, it may manifest immediately after a crisis, or it could be delayed, exaggerated or absent. Distorted grief reactions, such as bereaved individuals taking on the symptoms of illness the deceased, were also described. Thus, Lindemann differentiated between normal and aberrant grief reactions. He also highlighted the importance of psychiatric treatment to prevent prolonged and serious negative outcomes for the patient. Although

Lindemann was the first to use a more stringent methodology to research grief reactions, there have been numerous criticisms of his work. For example, the samples he studied are not representative of the general population, and the types of losses experienced by these samples would qualify as traumatic losses, and thus may not be generalizable to all loss experiences. Furthermore, there is a lack of detail regarding the methodologies used (e.g. total number of interviews) (Parkes, 1996).

Psychoanalyst and pioneer of attachment theory, Bowlby (1961), further built on the concept of grief work with insights from his study of childhood attachment. He observed that separation from the mother-figure early in life led to separation anxiety. According to Bowlby, these children attempt to get their mother-figure back through phases including protest and anger, despair and yearning, and emotional detachment as a coping mechanism even if the mother-figure returns. Bowlby noted that these reactions are similar to those of individuals across the lifespan who lose a loved one. He theorized that these reactions were, in essence, both grief for the loss of a 82

loved one, and viewed grief as a form of separation anxiety and loss of an attachment figure.

According to Bowlby’s theory, grief comprises three phases. The first is yearning and searching, involving the urge to recover the deceased person. The second is characterised by accepting the fact that the loss occurred and that it is permanent. In other words, the attempt to recover the lost person are abandoned. The last phase requires a reorganization of the connection to the deceased and reorganization in relation to other people, relationships and behaviours. Another phase, numbness, developed in collaboration with Parkes (1970) was later adopted as the first stage, ahead of yearning and searching. In this phase, the death is at least partially disregarded. Bowlby and

Parkes (1970) based their grief theory on their study of 22 widows aged between 26 and 65 years who were interviewed five times over a 12-month period following the death of their spouse. Data was also sourced from case notes from 95 psychiatric patients and interviews with 21 psychiatric patients who had experienced a loss during the six months before “their illness”. Bowlby and Parkes

(1970) observed that individual differences affected the way that people moved through these phases. (Parkes, 1970) believed that yearning, involving intense thinking about the deceased, is a critical element of the grief process. Despite logically understanding that yearning and searching for the deceased will not result in reunification with the loved one, Parkes (1970) believed undergoing this painful experience was necessary to unlearn the attachment to the deceased, thereby ultimately breaking bonds. Although this model consists of phases, it was not intended that the phases represented a prescribed manner of grieving, with the authors acknowledging a degree of fluidity between phases (Bowlby, 1980; Parkes, 2001). Parkes (2001) later noted, however, that some therapists viewed this theory in the context of prior psychoanalytic stage theories and implemented the phases in a sequential fashion.

Worden (1982) conceptualized grief as a process rather than a state. He developed a model consisting of tasks of mourning that need to be worked through to adjust to the loss. These comprise accepting the reality of the loss, working through the pain of grief, adjusting to the environment without the deceased, and withdrawing emotional energy and reinvesting in another relationship. 83

This model was developed from Worden’s experience as a grief counsellor and researcher, and from review of the existing bereavement literature, rather than empirical study. Nevertheless, his model was less rigid than stage models in that tasks of mourning could be completed in any order and in

1996, he presented an update to the fourth task of his model that involved finding ways to memorialize the person and to “relocate” them into one’s life Worden (1996). This notion was novel, as prevailing theories of the time promoted detachment from the deceased in some fashion.

Possibly the most renowned grief theory known to lay people was proposed by Kübler-Ross

(1969). Based on her observations of “over 200 dying patients” (p. 38), she posited that individuals go through five stages of grief: denial, anger, bargaining, depression and acceptance. Despite its widespread popularity, this, and other stage and phase theories have received major criticisms. M.

Stroebe, Schut, and Boerner (2017a) outline these shortcomings. First, they point out that these theories are often based on an unclear theoretical foundation. This particularly applies to Kübler-

Ross’s theory and less so to others like Bowlby’s theory, which is based on attachment theory.

Furthermore, many of the models have not been systematically tested with rigorous methodologies.

They cite conceptual confusion as another concern. For example, some of the theories stages comprise both cognitive and emotional aspects. This combination of different types of constructs leads to uncertainty as to what the stages actually represent. Stage models have been regarded as being too reductionist, and failing to account for other stressors or the greater context of grieving

(e.g. family, culture etc.). M. Stroebe et al. (2017a) note the dangers that implementing stage theories in a therapeutic context can have. Essentially, stage theories implicitly provide a guide by which bereaved individuals should grieve. This can lead people to be concerned with how their experience matches the theory instead of being allowed to experience their own natural emotions and thoughts. In response to the criticisms made since the model’s inception, Kübler-Ross and

Kessler (2005) presented their revised theory and attempted to addressed researchers’ concerns.

They clarified that the stages are responses that many people have, but that there is no uniform 84

response for grief. This intended clarification drew further objections from researchers (R. Friedman

& James, 2008; M. Stroebe et al., 2017a).

4.3.2 The specific issue of grieving parents.

Aside from the numerous problems that stage theories present for the population in general, there are particular aspects of the aforementioned models that do not apply well to specific types of loss, such as the experiences of grieving parents (Davies, 2004; Rando, 1986). Models that advocate for accepting the reality of the loss pose particular challenges in the case of parental grief.

This type of loss is unique in that it is unnatural for parents to outlive their children. Parental grief involves multiple losses: the loss of a future, lost hopes and dreams for the child, and the loss of their ability to perform their role as parents. The parent may experience guilt at being unable to protect their child. Therefore, working through the pain of loss is regarded as particularly challenging. Models that promote investment into other relationships can be difficult too. Rando

(1985) indicated that if the parent has other children, they will be trying to grieve for and relinquish the parental role, while still acting as a parent to another child. Rando also argued that the death of one’s child encompasses dealing with their death and with a loss of part of one’s self. Therefore, breaking bonds would be an impossible task.

As has been mentioned, an enduring theme in traditional grief theories has been the notion that bonds with the deceased must be relinquished (Davies, 2004). More recently developed accounts of grief that mention the relationship with the deceased emphasize the role of continuing the relationship with the deceased, rejecting the notion that ties must be severed. These contemporary theoretical foundations of grief are based on research with bereaved parents. Klass

(1993) identified numerous ways in which parents had kept their deceased children as a central part of their lives in their ten-year ethnographic study with a self-help group for bereaved parents. Data from interviews, their own writings, notes from meetings and newsletters showed that parents had restructured their relationships with their children through sharing memories of their children among the group. Parents used linking objects, like their clothing, religious ideas and devotion and 85

memories to retain their children as a part of their life. Similar findings have been reported by

Rosenblatt (2000). Through narratives of 58 bereaved parents, some of whom were no longer together, parents revealed that they continued their bond with their child by talking to them and about them to others. They found that retaining keepsakes like toys was also useful in maintaining a connection to their children. Other studies have also reported that continuing bonds with the deceased can be beneficial to outcomes for the bereaved (Field, Gal-Oz, & Bonanno, 2003; Gamino,

Sewell, & Easterling, 2000; Talbot, 2002).

In the case of perinatal loss, there are unique ways in which continuing bonds can be accomplished. Naming ceremonies, making funeral arrangements, and taking photographs of the baby, creating photo albums of ultrasound photographs, or planting trees for example, can lay the groundwork for forming a life-long bond with the baby (Gold et al., 2007; Klass, 1999). Only relatively recently have parents been encouraged to bond with their baby (cf. Stringham, Riley, &

Ross, 1982). It has been found that after later pregnancy losses, holding one’s baby soon after birth, while it was warm, may be a beneficial experience (Radestad & Christoffersen, 2008). However,

Hughes, Turton, Hopper, McGauley, and Fonagy (2001) assessed attachment of 53 infants born to women who had had a prior stillbirth. They found that having seen the stillborn baby predicted disorganized attachment in the subsequent baby. Similarly, McCreight (2004) reported that several of the male partners in their sample were given their deceased babies in the hospital with little preparation or explanation about what the baby might look like, or how to handle the baby. Options of ways to continue bonds with their children must be carefully presented to individuals.

4.3.2.1 The two-track model.

This model was designed to specifically describe the grief process when one loses a child.

This model posits that the bereavement response occurs along two axes or tracks, both of which are multidimensional (Rubin, 1999). The first track concerns how individuals function normally, and how this functioning is disrupted by the effects of loss. Possible areas of functioning that may be affected include emotional, somatic, interpersonal and psychiatric. The second axis concerns the relationship 86

to the deceased, specifically, how individuals maintain and change the relationship with the deceased. This track involves elements such as imagery and memories of and experiencing positive and negative affect toward the deceased.

This theory has received empirical support in samples of young parents with children who died from SIDS, middle-aged parents who lost adult children and older aged parents who lost older children. The first study to assess the model, carried out by Rubin (1981), used three groups of women: 30 young mothers who lost an infant to SIDS who were divided into a recent-loss group

(average of 7 months prior), and a distant-loss group (average 4.5 years prior) and 15 non-bereaved mothers. Measures included the STAI (Spielberger, Gorsuch, & Lushene, 1970), semantic differential scales focused on the extent of perceived impermanence of the present and future, the evaluation dimensions of the present and future and perceived self-vulnerability. A semi-structured interview, adapted from Cox (1970), scored on Freedom from Symptoms scale and the Present Effects of the

Loss scales was given to the loss groups. Results showed that the recent-loss group were more impaired on the functional track, than the other two groups. Specifically, they had greater anxiety, a more negative perception of the world and lower resilience. The other two groups were not significantly different from each other. Both loss groups also experienced changes in relationships to other children and found new meaning and priorities in life. On the relational track, the bereaved mother groups were comparable. Both groups experienced a continuing relationship with their deceased children, though the recent-loss group were more preoccupied with the deceased. These results support the notion that grieving is an ongoing process and that the relationship with the deceased may change, but is enduring (Klass, 1988, 1997).

4.3.3 Specific Coping with Bereavement Models: Cognitive Process Models Involved in Grieving

While earlier research promoting grief work failed to identify the core processes it involved, recently, study into the cognitive elements of grief work has been undertaken.

4.3.3.1 Rumination. 87

Those with a ruminative coping style, who focus on the negative aspects of a loss, have worse outcomes than those who do not engage in this type of coping. Nolen-Hoeksema and Larson

(1999) found that individuals who ruminated about the loss had higher levels of depression months afterward compared to those who did not, independent of depression levels soon after the loss.

Similar results have been reported by Capps and Bonanno (2000). It has been argued that ruminative coping may lead to more intense and longer impacts of the loss, which can be explained in several ways (Nolen-Hoeksema, 2001). For example, rumination is known to worsen the effects of negative mood (Morrow & Nolen-Hoeksema, 1990; Nolen-Hoeksema, Parker, & Larson, 1994). Furthermore, it might lead to decreased motivation, preventing the person from engaging in helpful behaviours.

Rumination may also hinder effective problem-solving and may diminish social support. Although rumination is often viewed as an approach process, whereby individuals actively focus on distressing elements of the loss, it has been argued that ruminating about specific aspects of the loss may actually be a technique to avoid the more threatening aspects of the loss, namely, that the deceased will never return. Numerous studies have supported this notion (Eisma et al., 2015; Eisma, Schut,

Stroebe, van den Bout, et al., 2014; Eisma et al., 2013).

Grief rumination, involves repetitive thinking about the causes and consequences of the loss and loss-related feelings (Eisma, Schut, Stroebe, Boelen, et al., 2014), and is predictive of increased levels of complicated grief, post-traumatic stress, depressive symptoms and general distress in people who have lost a close family member (Boelen, van den Bout, & van den Hout, 2003;

Bonanno, Papa, Lalande, Zhang, & Noll, 2005; Eisma et al., 2013). Recently, research has attempted to delineate its adaptive and maladaptive forms. Adaptive rumination in bereavement involves repetitive self-focussed thinking geared toward understanding one’s emotional reactions to the loss.

Maladaptive rumination, on the other hand, is characterised by repetitive self-focused thinking about injustice to the self and comparing the current situation caused by the loss to unrealised alternatives. Attempts to make distinctions between helpful and unhelpful forms of repetitive 88

thinking have been undertaken in other domains for example, in relation to personality (Trapnell &

Campbell, 1999) and depression (Treynor, Gonzalez, & Nolen-Hoeksema, 2003).

4.3.3.2 Positive psychological states.

In a similar vein, acknowledging the positive aspects associated with a loss has been shown to help those coping with a loss. For example, smiling and laughing while bereaved has been linked with better adjustment (Keltner & Bonanno, 1997). Additionally, finding positive meaning in times of grief have been associated with increased positive emotion and stress reduction. This has even been true in the case of losing a child (McIntosh, Silver, & Wortman, 1993). These results are in accordance with the revised cognitive stress theory, described below.

4.3.3.3 Confrontation and avoidance.

Confrontation-avoidance processes have been incorporated into the early psychoanalytic grief theories and remain a core concept of many contemporary grief theories. Psychoanalytic theories, like those proposed by Freud (1917) and Lindemann (1944) maintained that successful grief work involved confronting the loss while avoidance of the loss was seen as detrimental to adjustment. However, research testing this theory showed that the impact of confrontation and avoidance of grief is not so simple. A study of 42 conjugally bereaved men engaged in a narrative interview six months after bereavement and were asked to discuss their relationship to the deceased spouse and their relationship openly (Bonanno, Keltner, Holen, & Horowitz, 1995). During the interview, heart rate was monitored, and participants were asked to self-rate the frequency of a list of positive and negative emotions were experienced throughout the interview. The results revealed verbal-autonomic response dissociation, consisting of high physiological arousal measured by heart rate but low psychological confrontation was predictive of lower grief scores, measured by structured clinical interviews across 25 months of bereavement. Overall, findings from the study of confrontation and avoidance in coping with grief indicate that a balance of confrontation and avoidance is necessary in effective coping (e.g. Bonanno et al., 1995) and that some regulation of grieving may be beneficial (M. S. Stroebe & Schut, 2001b). 89

4.3.4 General life event theories: the role of traumatic experiences and stress

Trauma and stress theories account for the types of ways people respond to negative stressful life events like natural disasters, war and bereavement and the outcomes that follow. The application of these two approaches to the event of bereavement has only recently been considered

(M. Stroebe et al., 2017b).

4.3.4.1 Trauma theory.

Certain types of losses like the unexpected, sudden and disturbing nature of the loss of a loved one can be considered traumatic. As was explained in Chapter 3, perinatal loss has been conceptualized by some researchers in this manner. Therefore, there are potential applications of trauma theories to the experience of grief after perinatal loss. Three distinct branches of research on trauma have been carried out (M. S. Stroebe & Schut, 2001b). First, the study of stress-response syndromes explains how normal responses of stress after a traumatic event can become severe in their frequency and intensity to the point of becoming pathological, manifested as PTSD (M. J.

Horowitz, 1983, 1986). A key aspect of this research is the concept of intrusion and avoidance, hallmark features in reactions to trauma. Intrusion is the persistent reexperiencing of thoughts and feelings surrounding a traumatic event, whereas avoidance involves the evasion of thoughts and feelings from a trauma and can manifest in a variety of ways including memory disturbances about the trauma and behavioural changes. An excess of intrusion or avoidance would be indicative of impaired functioning.

The assumptive world views theory maintains that trauma can cause core assumptions that individuals have about themselves and the world to shatter (Janoff-Bulman, 1992). In other words, when faced with trauma, one’s original views of the world as a safe and just place, are eradicated.

Bereavement, particularly if the loss was traumatic, as it can be with perinatal loss (Bowles et al.,

2006; Bowles et al., 2000), can be considered a trauma that may lead to the destruction of these basic assumptions. When the view that the world is controllable is challenged, individuals are thought to engage in attributional thinking, or thinking about the causes of events (Engelbrecht & 90

Jobson, 2016). This has been a key area of focus in terms cognitions among those experiencing EPL and will be reviewed in depth in Chapter 6. The individual must cope with the loss by rebuilding a new assumptive world, integrating the trauma into their core assumptions through cognitive reappraisal and support (Janoff-Bulman, 1992). This coping strategy requires a balance between confronting and avoiding the thoughts, feelings and images of a traumatic event. The concept of attributional thinking and assumptive world views in relation to perinatal loss has been examined in a study by Downey, Cohen Silver, and Wortman (1990), and will be described in detail in Chapter six.

The impact of disclosure about the trauma on adjustment and outcomes has also been studied (Pennebaker, 1989, 1993). Often, individuals who have been through a trauma feel the need to discuss it with others, even though it reactivates negative emotions (see Rimé, Philippot, Boca, &

Mesquita, 1992 for review). Although it is believed by lay people that verbal disclosure is beneficial for adjustment (Zech, 2000), this is not always the case. Finkenauer and Rimé (1998) assessed the difference in between the emotional events that are either shared of kept secret. In a sample of 150 psychology students, questionnaires were given concerning how intensely the event evoked a given list of primary emotions, emotional appraisal, like the participants’ levels of responsibility or control over the event, how they handled their emotions during the event, and frequency of mental rumination. Counter to the investigators’ hypothesis, non-shared events were not perceived as more negative and more intense than shared ones. In fact, events kept secret were rated as less negative and intense than shared ones. Non-shared events also involved more cognitive activity than shared events, like engaging in efforts at understanding what happened. Researchers in the field highlight that disclosure is not simply a way to express feelings about a trauma in order to overcome it, rather disclosure involves complex cognitive and social dynamics. The act of disclosure can allow the person to cognitively reorganize the emotional experience and can induce changes to their support system.

4.3.4.2 Cognitive stress theory and the revised coping model.

The cognitive stress theory, developed by Lazarus and Folkman (1984), and the revised coping model (Folkman, 2001) is a general model about how stress impacts the individual. As it 91

applies to bereavement, the theory maintains that the loss of a loved one would be considered a stressor. This stressor would in turn, tax the individual’s resources resulting in possible negative outcomes (e.g. poor mental or physical health). The process of appraisal leads to a conclusion of whether bereavement is considered stressful or manageable.

Once the stressor is detected, the individual appraises it as either harmful or not. Harmful stressors would then require coping to occur in order to eliminate the harmful appraisal. Coping efforts including confrontation and avoidance and problem- and emotion-focused coping would be adopted. Problem-focused coping uses behaviours directed at achieving specific goals and is directed at managing the problem eliciting the stress (Folkman, 2001; M. Stroebe & Schut, 2010). Problem- focused techniques are considered more suitable for modifiable situations (M. S. Stroebe & Schut,

2001b). Emotion-focused coping uses emotional techniques to eliminate the stressor that causes negative emotions (Lazarus & Folkman, 1984; M. Stroebe & Schut, 2010). This type of coping is more appropriate for unmodifiable situations (M. S. Stroebe & Schut, 2001b). A combination of coping strategies will be used and coping patterns will change with time (Folkman, 2001).

The UCSF Coping Project investigated the course of grief in a sample of with 253 homosexual males acting as informal carers of their partners with AIDS (e.g. Folkman, Chesney, & Christopher-

Richards, 1994; Folkman, Chesney, Cooke, Boccellari, & Collette, 1994; Moskowitz, Folkman,

Collette, & Vittinghoff, 1996). Participants were interviewed bimonthly for two years and semi- annually for the following three years. In the event that the partner with AIDS died, additional interviews were conducted soon after the death. Measures included the CES-D (Radloff, 1977),

Positive States of Mind (M. Horowitz, Adler, & Kegeles, 1988), the Bradburn Affect Balance scale

(Bradburn, 1969), that measures positive and negative emotions, and Ways of Coping (Folkman &

Lazarus, 1985), that measures aspects of coping. The presence of positive emotions as well as negative emotions was an important finding of this longitudinal study. Although results showed high levels of depressive symptoms, participants also reported high levels of positive psychological states and that these occurred at the same frequency, after the weeks soon after the loss.From the above 92

study, Moskowitz et al. (1996) reported that two particular types of coping were critical in maintaining positive emotions, namely, active problem-focused coping and positive reappraisal.

Problem-focused coping was only associated with less negative mood at one month prior to the partner’s death. However, it was related to increased positive mood across all assessment points.

Active problem-focused coping, which is usually task focused, is believed to give individuals a sense of control over their situation (Folkman, 2001). In the case of bereavement, sense of control is most often lacking. In addition, the completion of tasks can give bereaved individuals a sense of mastery

(Folkman, 1997). According to Folkman (2001), this interpretation is in line with findings that perceptions of control over consequences of illness are more strongly related to lower depression levels than perceptions of control over the disease itself (S. C. Thompson, Nanni, & Levine, 1994).

Positive reappraisal, an emotion-focused coping mechanism (Moskowitz et al., 1996), was consistently and independently related to positive affect. By using cognitive reframing, individuals coped by viewing the situation positively. This method of coping can occur at any time throughout the bereavement process (Folkman, 1997).

Positive affect, discussed previously, is thought to have adaptational value in the coping journey (Folkman & Moskowitz, 2000). Receiving reinforcement from accomplishing problem- focused techniques and reframing the loss in a positive light can increase motivation to continue with coping. Positive emotions also serve as respite from the negative affect often inherent with grieving. These effects of positive emotion can encourage ongoing coping efforts (Folkman, 2001).

A major finding from the UCSF Coping Project, was the types of coping mechanisms correlated with positive psychological states shared a common theme, specifically, the search for and finding positive meaning from the loss experience (Folkman, 1997). The act of searching for meaning from negative life events has been observed in many studies and is considered an adaptive strategy in coping with a negative experience (Cornwell, Nurcombe, & Stevens, 1977; Glick, Weiss, &

Parkes, 1974; Janoff-Bulman & Wortman, 1977; Moos & Tsu, 1977). Meaning can be found through goal-directed behaviour and accomplishing goals, through finding positive aspects about a loss, 93

through new bonds that have formed because of a loss. This is in line with S. Thompson (1998) who explains how schemas, or cognitive representations can be changed in light of a negative life event.

This can be done by changing goals, altering one’s self-image from victim to survivor, and by reprioritising things in life. Furthermore, adaptive assumptions can be rebuilt by reinterpreting the event through a positive view, changing perspectives, or making social comparisons to others who are worse off, through downward counterfactual thinking.

The concepts of meaning-based coping and positive emotion, which sustain the coping process, were added into the cognitive-stress model, which was presented as the “revised coping theory” (Folkman, 2001). Although cognitive-stress and revised coping theories have much to offer in terms of explaining coping, such as highlighting the mediating role of cognitive appraisal in coping, they have limitations in their application to bereaved people. For example, it is unclear how the model can be used to make predictions about when emotion- or problem-focused coping are best used when coping with loss (M. S. Stroebe & Schut, 2001b). The Dual Process Model, described next, has incorporated key elements of revised coping theory, and other frameworks to form a comprehensive model explaining the coping process after experiencing a loss.

4.3.5 An integrative model: The dual process model of coping with bereavement.

The Dual Process Model (DPM), one of the most influential models of coping with bereavement, was developed by M. S. Stroebe and Schut (1999) in response to the limitations of other models that have been used to explain bereavement and coping. Other perspectives did not adequately address differences in coping between individuals observed in the literature, failed to represent a dynamic coping experience, lacked empirical evidence, were not generalizable across culture or time, and had limited focus on intrapersonal process and health outcomes (M. Stroebe &

Schut, 2010; M. S. Stroebe & Schut, 2008). The DPM model goes beyond explaining phenomena associated with grieving, though it does incorporate elements from prior theories, namely, the concept of grief work, and elements from cognitive-stress theory described above (M. Stroebe &

Schut, 2010). 94

The DPM identifies two main types of stressors: loss-orientation and restoration orientation, both of which require one’s attention and effort for effective coping. Loss-orientation stressors involve grief work, defined by W. Stroebe, Schut, and Stroebe (2005) as the “cognitive process of confronting the reality of a loss” focussing on the relationship with the deceased, their life and their death. This may involve feelings of yearning for the deceased. Loss-oriented coping, then, involves concentration on, appraisal and processing of aspects of the loss itself. It involves managing the loss experience, namely, regarding the deceased. Restoration-orientation stressors refer to the consequences of the loss. This involves financial consequences, changes in roles, changes to one’s life in general. This manner of coping entails reformulating one’s position in the world without the deceased and managing other general life stressors. Both types of stressors are seen as potentially distressing, but both must be confronted in order to cope effectively.

An important contribution of this model involves the cognitive oscillation that occurs between both types of coping. Unlike stage theories of grief, this dynamic coping style involves a cognitive process of confrontation and avoidance of stressors in varying degrees. For example, sometimes, individuals will engage in grief work, thinking about the loss and the deceased. This necessarily involves avoiding secondary life stressors, like managing household chores. At other times, individuals will be engaging in the world without the deceased, perhaps trying new activities.

Then, they will be engaged in restoration-oriented coping, while avoiding loss-oriented stressors.

There can also be breaks from grieving. In general, though, it is expected that soon after the loss, increased loss-orientation coping will be used there will be an increased reliance on restoration- coping with time (M. S. Stroebe & Schut, 2008).

Overall the cognitive process of oscillation, using confrontation and avoidance, is imperative in adaptive coping, and excessive confrontation or avoidance have been thought to be detrimental to adjustment. Delespaux, Ryckebosch-Dayez, Heeren, and Zech (2013) tested this notion. They assessed 321 bereaved individuals who had lost a romantic partner, using self-report measures, including two developed by the researchers. One addressed how individuals appraised grief-related 95

stressors, with half measuring loss-oriented and half measuring restoration-oriented stressors.

Participants rated the extent to which they evaluated the stressors negatively on a Likert-scale. The other measure assessed oscillation between coping strategies. This 24-item grief coping questionnaire was based on the Inventory of Daily Widowed Life (IDWL) but were adapted to improve the limitations of the IDWL (Delespaux et al., 2013). Factor analysis showed the measure contained two factors that corresponded to loss-orientated and restoration-oriented coping.

Participants scored items using a Likert scale to indicate the frequency that they used a given strategy in the last month. The Inventory of Traumatic Grief, a 30-item questionnaire was used to measure grief symptom severity over the past month. The results showed that using restoration- oriented coping was associated with lower levels of grief. Caserta and Lund (2007) similarly found that lower restoration-oriented coping was linked with increased levels of depression, grief, and loneliness, while greater use of restoration-oriented coping was associated with higher levels of self- are and daily living skills and increased personal growth.

Stroebe and Schut note that shifting between coping styles is crucial, and also describe a critical fluctuation between positive and negative affect and appraisal (M. S. Stroebe & Schut,

2001a). They argue that although negative affect is unpleasant, it helps the grieving process by enhancing one’s grief, an important aspect of coming to terms with the loss. Positive affect or appraisal, like constructing a positive meaning around the loss can be beneficial, but if it were maintained relentlessly, it would impede grieving.

The DPM has several advantages. It explains individual differences in grieving, and how people can experience a range of emotions throughout the grieving process. The DPM also accounts for how coping is a part of everyday life. It can explain how some can experience pathological forms of grief, by extreme confrontation of loss-oriented stressors. However, the authors have recently acknowledged a critical oversight in their model. They noted that there is the possibility of stress overload, the “perception of having more than s/he feels able to deal with” (M. Stroebe & Schut,

2016). This can involve excessive experiences, activities and other stimuli. The concept of overload 96

accounts for individuals who perceive that they cannot cope due to an excess of loss- or restoration- oriented stressors. Overload can occur from too many loss-oriented stressors, say, experiencing multiple losses, or from restoration-oriented stressors, like interpersonal difficulties. Alternatively, overload can arise from being overwhelmed with combination of loss- and restoration-oriented stressors, known as dual-orientation overload. They have since incorporated overload into the DPM.

Although the model was based on observations from spousal grief, research has been undertaken to test the model’s applicability and generalizability to other types of loss. Thus far, the

DPM has successfully been applied to a variety of groups, including those experiencing the death of a child (Wijngaards et al., 2008), among older bereaved adults (Hansson & Stroebe, 2007), and among children and other family members (Stokes, Pennington, Monroe, Papadatou, & Relf, 1999).

It may also be applicable to losses not involving a death, like home sickness (M. Stroebe, Vliet,

Hewstone, & Willis, 2002).

Although the DPM is difficult to directly test, there have been a few studies that have attempted to do so (M. S. Stroebe & Schut, 2008). In a study described previously, Caserta and Lund

(2007) developed a tool to assess both types of DPM stressors, and oscillation. They found that both types of coping styles were used, and that over time, there was greater focus on restoration variables. Similar results were reported by Richardson and Balaswamy (2001). Despite the wide acceptance of the DPM more research is required to test if empirical evidence matches the theoretical propositions of the DPM (M. Stroebe & Schut, 2010).The DPM and the other models of coping with bereavement are critical to the understanding of how one might handle the loss of a loved one. Few theoretical approaches have specifically considered the grief of bereaved parents, however, there are some theories, like the two-track model, the DPM, and the concept of continuing bonds that seem, at face value, to be applicable to bereaved parents. The next major section of this chapter will focus on the prevalence rates and course of grief symptoms observed in parents with perinatal loss.

4.4 Grief Symptoms After Perinatal Loss 97

Along with anxiety and depression, grief has been a key affective reaction observed and studied among parents experiencing perinatal loss. A key review by Brier (2008) commented that the research on “…rates, intensity, and duration of grief following miscarriage is extremely sparse”, and this quote still describes the status of research in this field. Not only is there a paucity of studies, but those that have been carried out are characterised by numerous limitations (Brier, 2008). For example, the body of literature is mainly qualitative in nature, and studies often lack a clear operational definition of grief. A literature search of grief prevalence rates, course and duration of symptoms revealed that a variety of measures like the PGS, PBS, and MGS, have been used to measure grief. These assess different symptoms, and have different levels of comprehensiveness

(Brier, 2008). Furthermore, there is a lack of well-designed studies, with few prospective studies and few studies including appropriate comparison groups. Importantly, these studies vary widely in their definitions of loss, resulting in heterogeneous samples. Finally, many studies have small sample sizes and studies differ in their assessment points. These methodological issues make it difficult to compare results between studies.

4.4.1 Prevalence of grief symptoms.

For the purposes of this review, literature searches of the prevalence of grief and the course of grief after pregnancy loss were conducted. Search terms included ‘miscarriage’, ‘ectopic’,

‘perinatal loss’, and ‘grief’. Articles were then hand searched for relevance. Articles were also retrieved through the reference lists of other articles. Intervention studies and those using samples who were subsequently pregnant were excluded. One relevant study by Paton, Wood, Bor, and

Nitsun (1999) was excluded as grief scores were reported graphically, and exact rates could not be detected. This search yielded a total of four studies. The studies, and comments about their methodologies and results can be found in Table 4.1.

Beutel, Deckardt, et al. (1995) examined grief symptoms over time in a sample of 125 consecutive women attending a hospital for a pregnancy loss prior to 20 weeks completed gestation.

The women were considered to have a grief reaction using the Munich Grief Scale (MGS; Beutel, 98

Will, Völkl, von Rad, & Weiner, 1995), if they scored above one standard deviation above the mean.

They found that immediately after miscarriage, 20% of the sample were considered to have a grief reaction, while another 20% experienced a combined grief and depressive reaction. Among a sample of 304 women, Neugebauer and Ritsher (2005) reported a prevalence of 40.3% at 2 weeks, 20.3% at

6-8 weeks and 19.1% at 6 months after miscarriage. However, 50% of the sample experienced a loss greater than 12 weeks gestation. Interestingly, that study is called “depression and grief after early pregnancy loss”, highlighting the issue in the literature regarding inappropriate use of perinatal terminology. One study attempting to evaluate the reliability and validity of the Perinatal Grief

Intensity Scale (PGIS) measured grief with this scale and the PGS, in order to compare results from both measures. Investigators assessed 103 women who experienced a miscarriage, stillbirth or neonatal death one to eight weeks after the loss. Results indicated that 70.5% of women scored above the PGS cut-off while 67.4% scored above the PGIS cut-off (Hutti, Armstrong, Myers, & Hall,

2017). Finally, a retrospective study using a sample of 186 women who experienced a miscarriage in the previous 12-18 months assessed women’s perceptions of how long they grieved for (Hutti,

DePacheco, & Smith, 1998). The authors found that 21.5% of the sample experienced mild grief, while 42% experienced moderate grief, and 31.7% experienced intense grief (Hutti et al., 1998), measured by the Perinatal Grief Intensity Scale. Due to the small number of studies available and the varied assessment points and the use of heterogeneous samples with a variety of perinatal losses, it is difficult to draw general conclusions about the prevalence of grief after EPL among women. No studies reporting partner prevalence rates could be obtained.

4.4.2 Course and duration of grief symptoms.

The same methodology for reviewing prevalence rates was applied to conducting a review of the course of grief symptoms. Search terms included ‘miscarriage’, ‘ectopic’, ‘perinatal’, ‘loss’, and

‘grief’, and articles were hand searched for relevance. A total of 13 studies describing grief course could be found and are presented in Table 4.1. Ridaura et al. (2017) explored grief symptoms among

70 women with a perinatal loss using the PGS. They found significant decreases between 1, 6- and 99

12-months post-loss. Tseng, Cheng, Chen, Yang, and Cheng (2017) measured grief over 12 months among 30 couples with miscarriage or stillbirth using the MGS. Results showed that grief declined at each measurement point but that significant differences were evident between 1 and 3, and 1 and 6 months, with no significant decrease between 6- and 12-months post-loss. There was no significant difference between six months and 12 months, leading investigators to conclude that the first six months after the loss is a critical time for bereaved parents. Similar findings have been reported by

Swanson, Connor, Jolley, Pettinato, and Wang (2007) and Janssen, Cuisinier, de Graauw, and

Hoogduin (1997), who found a significant decrease over the 18 months after the loss. Lin and Lasker

(1996) reported an overall decrease of grief over 2 years, with the greatest decrease occurring over the first year. Another study noted a significant decrease over the 5 years following miscarrying women (Broen et al., 2005).

Some studies report that symptoms do not always reduce consistently but may fluctuate.

For example, Lin and Lasker (1996) reported that 59% of the sample experienced unexpected grief reactions. These included “reversed grief” in which symptoms were initially high, decreased at one year, and then increased again at two years, “delayed grief” involving elevated symptoms initially and at one year, but with symptoms decreasing at two years, and “low unchanged grief”, where participants experienced some elevation of symptoms throughout. Stinson et al. (1992) noted that there was a significant decrease in women’s grief scores over 2 years, while there was no significant change in men’s scores. In the male sample, over 29% actually experienced an increase in grief scores over the 2 years, while only 16.7% of the female sample experienced this rise. The investigators note, however, that men had a low retention rate (66%) compared to women (81%) and suggested that men who remained in the study may have been experiencing worse grief symptoms than those who dropped out (Stinson et al., 1992). Thus, the process of grieving may actually be more complex than described elsewhere in the literature (Lin & Lasker, 1996). Similarly,

M. Stroebe et al. (2017b) note that the “linearity between coping and consequences tends to be assumed, ignoring the possibility that grieving could incorporate undulating wave-like phenomena”. 100

Overall, the existing body of research indicates that levels of grief after perinatal loss are highest immediately after the loss and may remain high for about 6 months (Beutel, Deckardt, et al., 1995;

Beutel et al., 1996; Hutti et al., 1998; Neugebauer & Ritsher, 2005; Nikčević, Snijders, Nicolaides, &

Kupek, 1999; Tseng et al., 2017). This pattern is similar to that of other types of significant losses

(Brier, 2008).

4.5 Conclusion

Grief, a normal reaction to loss, has proven to be a complex construct to define and conceptualize. Despite the increased study of grief since Freud’s observations, difficulty remains in describing what exactly constitutes normal grief reactions. This is reflected in the different approaches to grief taken DSM IV and 5. From a theoretical standpoint, there has been significant development in how grief is viewed. With increased research in the field, there has been a clear shift away from placing high value on detaching from the deceased to a greater emphasis on continuing bonds in new ways. As grief relates to EPL specifically, various relevant theories such as trauma theory, and cognitive process models, cognitive stress theory, and the two-track model have been reviewed. Cognitions after EPL are a central focus of this thesis and will be explored in detail in

Chapter 6. It has been argued that bereaved parents are a unique cohort and that not all grief theories, treatments or the theoretical foundations on which they are designed are relevant or beneficial for them (Davies, 2004; Rando, 1985). The currently prevailing grief framework, the DPM, incorporates key elements from multiple foundational theories described here, and although not specifically designed for those experiencing EPL, has been shown to explain grief among parental bereavement. Recently, research has turned to specific aspects of cognitive-emotional processes associated with coping that affect outcomes, rather than on theories in particular (M. Stroebe et al.,

2017b). Crucial dimensions emerging from these theories include confrontation-avoidance, emotion- versus problem-focus, control and reappraisal mechanisms (M. S. Stroebe et al., 2001a).

There is a serious lack of research regarding prevalence rates of grief in women and particularly in men experiencing EPL. Most studies assessed groups experiencing different kinds of 101

perinatal losses and varied measurement times, resulting in prevalence rates that vary widely between studies. Given these obstacles, it impossible to be certain of how many women and men typically experience high levels of grief after EPL. Similarly, relatively few studies have assessed the duration and course of grief symptoms, and those that have, manifest the same methodological concerns as those that examine prevalence. What can be gleaned from the existing body of research is that grief symptoms appear to be more intense for the first six months after the loss, and then decrease (Brier, 2008). The lack of understanding about prevalence, duration and course of grief is problematic as it prevents at risk individuals from being identified. Therefore, clinically and from a public health standpoint, establishing accurate prevalence rates and understanding their duration is critical.

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Table 4.1

Prevalence and Course of Grief Symptoms after Perinatal Loss

Study N, sample characteristics, Design Grief Measures Prevalence Course Comments loss terminology Beutel, 125 consecutive Longitudinal: MGS Immediately Symptoms decreased by Course includes 90 Deckardt, et miscarrying women, immediately after the MC: T2; participants were women; grief scores al. (1995), under 20 weeks gestation after MC (T1), 6 grief reaction - divided into 4 groups: based on sadness Germany months (T2), 12 20%; grief, grief and depression, dimension of MGS; months later combined depression, and other (low no cut-off score (T3) depressive grief and low depression); developed, so high and grief grief group: scores on MGS score defined as 1 reaction - 20% declined at T3, but they SD above the mean still scored significantly higher than the other

groups

Beutel et al. 56 couples were studied Longitudinal: MGS Not reported Women: grief scores fell The term MC was (1996), shortly after “miscarriage” after loss (T1), 6 significantly at each not defined; at T2, n Germany (M = 10 weeks gestation; months (T2), 12 assessment point; they = 47; at T3, n = 45 range 6-16 weeks months (T3) scored significantly higher gestation) than men at each time point; men: grief scores declined significantly between T1 and T2

Broen et al. Women with MC (n = 40) Longitudinal: Feelings of grief Not reported Grief scores fell at each MC group had (2004), compared with women 10 days, 6 rated on a Likert- time point but significance significantly higher Norway undergoing induced months, 2 years type scale testing not done grief scores than abortion (n = 80) < 13 induced abortion weeks gestation group at each time point 103

Study N, sample characteristics, Design Grief Measures Prevalence Course Comments loss terminology

Broen et al. Women with MC (n = 40) Longitudinal: 10 Feelings of grief Not reported MC group had significantly (2005), compared with women days (T1), 6 rated on a Likert- higher grief at T1, T2 and Norway undergoing induced months (T2), 2 type scale T3 compared to induced abortion (n = 80) < 13 years (T3), 5 abortion group; MC group: weeks gestation years (T4) significant decrease in grief between T1 and T4

Goldbach, 138 women, 56 partners, Longitudinal: 6-8 PGS Not reported Decrease at each time Dunn, including “spontaneous weeks, 12-15 point but not tested for Toedter, and abortion”, ectopic months, 26-40 significance Lasker (1991), pregnancy, “foetal death”, months USA and neonatal death; M = 16.5 weeks gestation Hutti et al. 186 women experiencing Retrospective; PGIS – based on Mild grief: Days – 3 months after loss: PGIS cut-off score (1998), USA pregnancy loss < 16 weeks MC occurred self-report of 21.5%; 47.8 %; 6 – 12 months: not used; responses gestation within the how long they moderate 8.8%; 12 – 18 months: 1.1 about course previous 12-18 perceive their grief: 42%; %; 2 participants reported available for 159 months grieving lasted intense grief: no grief response; 39% of women 31.7%. the sample grieved for 6 months or more; 48.9% grieved less than 3 months

Hutti et al. 103 women with MC, Longitudinal: PGIS and PGS T1: 70.5% on Not reported (2017), USA stillbirth or neonatal one to eight the PGS; death weeks post-loss 67.4% on the (T1), 3 months PGIS after

104

Study N, sample characteristics, Design Grief Measures Prevalence Course Comments loss terminology Janssen et al. 227 “miscarrying” women Longitudinal: “as PGS Not reported Grief significantly Study examined the (1997), (91% had loss under 20 shortly as decreased with time contribution of risk Netherlands weeks gestation) possible” after factors on grief the loss, 6 longitudinally months, 1 year 18 months post- loss Lin and Lasker 138 women and 56 male Longitudinal: 2 PGS Not reported 41% had elevated grief Demographic (1996), USA partners experiencing months, 1 year, initially that subsided with variables, pregnancy spontaneous (n = 63) 2 years post loss time; 59% had reversed, history before and abortion, ectopic delayed or low unchanged after the loss pregnancy (n = 18), grief contributed to grief stillbirth (n = 39), and responses neonatal death (n = 18); total sample participating in all 3 time points = 122 Neugebauer 304 women with MC Longitudinal: 2 PBS (cut-off 2 weeks: For majority of sample, Women with high and Ritsher (before 28 completed weeks, 6-8 above 9 on the 40.3% decrease of initial grief, grief more likely to (2005), USA weeks); 50% < 12 weeks weeks, and 6 Perinatal 6-8 weeks: but persisted at 6 months report depressive gestation months post-MC Bereavement- 20.3% in approximately 20%; symptoms than Baby Scale) 6 months: significance testing not women with less 19.1% done severe grief feelings

Nikčević, 143 women 10 – 14 weeks Longitudinal: 4 TGI (adjusted for Not reported Grief scores significantly Tunkel, et al. gestation with weeks, 4 months MC) lower at 4 months (1999), UK anembryonic pregnancy post-loss compared to 4 weeks or foetal death Ridaura et al. 70 women with a Longitudinal: 1, PGS Not reported Significant decreases 71% had a medical (2017), perinatal loss (any time 6, and 12 between 1, 6- and 12- termination of Spain during pregnancy, up to months post-loss months post-loss pregnancy at M = 28 days postpartum) 22.4 weeks (SD 105

Study N, sample characteristics, Design Grief Measures Prevalence Course Comments loss terminology = 5.61); non-medical termination group that had perinatal loss at M = 25.7 weeks (SD = 4.77)

Stinson et al. 56 couples with MC, Longitudinal: 2 PGS Not reported Scores for women declined over time, gender (1992), USA ectopic pregnancy, months, 1 year, significantly; no significant difference stillbirth, neonatal death 2 years post loss change in men’s’ scores; disappeared Swanson et 85 women with MC < 20 Longitudinal: Handwritten Not reported Active grief decreased with al. (2007), weeks gestation 1, 6, 16, 52 descriptions of time USA weeks post-loss feelings were coded and rank- ordered

Tseng et al. 30 couples with perinatal Longitudinal: MGS Not reported Significant decline (2017), loss (6 – 29 weeks 1 (T1), 3 (T2), 6 between T1 and T2, and T1 Taiwan gestation; 63% 12 – 20 (T3), 12 months and T3 weeks gestation) (T4) post-loss Note. MC = miscarriage; MGS = Munich Grief Scale; PGS = Perinatal Grief Scale; PGIS = Perinatal Grief Intensity Scale; PBS = Perinatal Bereavement Scale; TGI = Texas Grief Inventory.

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Chapter 5: Risk Factors for Psychological Distress after Perinatal Loss

5.1 Introduction

The previous chapters have demonstrated that although the majority of women and their partners do not experience significant psychological distress after pregnancy loss, a significant minority of people do go on to experience increased rates of anxiety, depression and grief. The question, then, is why does this occur? The purpose of this chapter is to review the key risk factors that may contribute to psychological distress after perinatal loss.

To date, research has focused mainly on the affective consequences of pregnancy loss, with less consideration given to the factors that may increase the risk of psychological distress. It has been argued, however, that identifying the risk factors for developing psychological distress post pregnancy loss is important both from clinical and public health perspectives (Klier et al., 2002; Lok

& Neugebauer, 2007). Factors identified as being potentially relevant include demographic variables, psychiatric history, pregnancy related factors and reproductive history It should be noted that the following review pertains only to women unless specifically stated otherwise as research on partners is limited.

5.2 Demographic Factors

Numerous demographic variables have been examined with respect to pregnancy loss and the risk of developing psychological distress.

5.2.1 Maternal age.

Research regarding the impact of maternal age on psychological consequences is scarce.

Some studies have found a relationship between maternal age and depressive symptoms

(Neugebauer, 2003) and grief (Toedter et al., 1988) after pregnancy loss. For example, in a sample of

114 women who lost a pregnancy prior to 28 weeks completed gestation, Neugebauer (2003) reported that younger women had higher levels of depressive symptoms than older women on the 107

CES-D six to eight weeks post loss. Furthermore, they found no association between age and depression symptoms in a comparison group of community women (N = 318). Toedter et al. (1988) found similar results in their longitudinal study of 138 women and 56 partners. Participants completed the PGS six to eight weeks after perinatal loss. Interestingly, the results of both of these studies were contrary to their hypotheses that older maternal age would be associated with psychological distress.

Many other studies have failed to find an association between maternal age and either depressive symptoms (Beutel, Deckardt, et al., 1995; Neugebauer et al., 1992a; Prettyman et al.,

1993; Thapar & Thapar, 1992), depressive disorders (D. T. S. Lee et al., 1997; Neugebauer et al.,

1997), anxiety (Beil, 1992; Prettyman et al., 1993; Thapar & Thapar, 1992), or grief symptoms

(Janssen et al., 1997; Turner et al., 1991). Some possible reasons for these results have been proposed. It is well documented that the chance of pregnancy loss is directly related to increasing maternal age, and it is therefore arguable that younger women may not be expecting pregnancy loss to occur, whereas older women would have a greater awareness of this increased risk. As Research suggests that unexpected negative events can give rise to adverse psychological consequences

(Nolen-Hoeksema & Ahrens, 2002), it is possible that increasing age may serve as a protective factor against grief, depression and anxiety (Shoum, 2011). Likewise, older women may have more resources to cope (e.g. stable partner, financial security) with the loss and they may be more likely to have other children (see below) than younger women. On the other hand, younger women may be less likely to be affected negatively by pregnancy loss as they have more childbearing years ahead of them than older mothers, and therefore would have more chances in which to get pregnant again.

5.2.2 Education and occupational status.

Generally, education level has not been found to be significantly associated with psychological distress after pregnancy loss (Engelhard, Van den Hout, & Schouten, 2006; Klier et al.,

2000; Lin & Lasker, 1996). Lasker and Toedter (1991), however, explored the relationship between multiple variables and grief in a sample of 138 women and 56 men experiencing various forms of 108

perinatal loss. They found that higher education levels predicted scores on the Active Grief subscale of the PGS two years post-loss. Similarly, Beutel, Deckardt, et al. (1995) reported a significant relationship between greater depression symptoms and lower levels of education post-loss. No significant correlation has been found between occupational status and psychological distress (Klier et al., 2000; Neugebauer et al., 1992a; Neugebauer et al., 1997; Prettyman et al., 1993; Thapar &

Thapar, 1992).

5.2.3 Marital status and quality.

The role of marital status is unclear at this point. Numerous studies have failed to find an association between marital status and depression (Beutel, Deckardt, et al., 1995; Neugebauer et al.,

1992a; Prettyman et al., 1993), anxiety (Prettyman et al., 1993), or grief (Beutel, Deckardt, et al.,

1995; Turner et al., 1991) symptoms. One study also found that the relative risk for developing

Major Depression after pregnancy loss did not change significantly by marital status (Neugebauer et al., 1997). T. Friedman and Gath (1989), however, surveyed 67 women one-month post loss and found the incidence of psychiatric morbidity using the Present State Examination among was significantly greater for single women than married women.

Some researchers have examined the quality of the partner relationship in relation to post pregnancy loss symptoms. Janssen et al. (1997) reported that women who lacked support from their partners exhibited greater levels of despair, measured by the PGS compared to women whose partners provided them with support. Using a sample of 125 women, Beutel, Deckardt, et al. (1995) assessed depression and grief in the year following a loss occurring before 20 weeks gestation.

Specifically, immediately after the loss, those experiencing a depressive reaction were the most dissatisfied with their partners’ level of support. In addition, those with a combined grief and depressive reaction experienced a significant decline in partner support six months post loss. While this study found no association between marital status and psychological distress, they did observe that low levels of partner support predicted women’s psychological symptoms. Therefore, the 109

quality of the relationship rather than marital status alone, may be more relevant in predicting psychological distress after pregnancy loss.

5.2.4 Conclusion.

Overall, it appears that some demographic variables may place those experiencing pregnancy loss at heightened risk for experiencing psychological distress like maternal age, while others, like education level and occupational status do not. It may be, as Lin and Lasker (1996) discovered, that it is the combined effect of some or all of these variables that may explain why some go on to develop psychological distress post-loss. Diverse study designs and methodologies used in these studies further complicate the picture.

5.3 Psychiatric History

Available research suggests that individuals with a history of psychiatric symptoms and disorders are at greater risk of psychological distress post pregnancy loss. For example, Neugebauer et al. (1997) reported that 54% of those with a history of major depression experienced a recurrence of disorder following the loss. Prettyman et al. (1993) found that all participants with a history of major depression in their sample suffered a recurrence after the loss, but their sample only comprised five participants. Prior mental health problems have been shown to predict grief scores on the PGS. Lasker and Toedter (1991), reported that history of depression predicted scores on the

Active Grief and Difficult Coping subscales two months post loss and on all three subscales in 136 men and women two years after perinatal loss. Toedter et al. (1988) similarly found mental health symptoms to be predictive of overall PGS scores, and Active Grief subscale scores. The researchers also observed that the Difficulty Coping subscale was most related to this variable.

5.4 Pregnancy-Related Factors

Pregnancy factors, typically consisting of attitude toward the pregnancy and gestational length at the time of the loss have been studied in relation to psychological distress.

5.4.1 Attitude toward the pregnancy. 110

Assessment of the attitude toward the pregnancy usually involves ascertaining whether the pregnancy was wanted or planned. Comparing 232 miscarrying women with 283 pregnant controls,

Neugebauer et al. (1992a) found that women who lost a wanted pregnancy had higher CES-D scores than pregnant women who did not want their pregnancies. Among participants with unwanted pregnancies, there was no difference in depression levels between the pregnant and miscarriage group. In a sample of 83 couples miscarrying before 24 weeks gestation, Kong, Chung, et al. (2010) reported that a planned pregnancy significantly predicted high BDI scores in men immediately after the loss. Similarly, Beutel, Deckardt, et al. (1995) found that ambivalence toward the foetus predicted depressive, but not grief reactions. There have been inconsistent findings regarding anxiety and attitude toward the pregnancy. For example, some researchers have found an increase in anxiety among unplanned pregnancies which terminated (Prettyman et al., 1993; Thapar &

Thapar, 1992), while others have found no difference in anxiety levels between pregnancy losses that were either planned or unplanned (T. Friedman & Gath, 1989; Jackman, McGee, & Turner,

1991). With respect to grief symptoms, Kennell, Slyter, and Klaus (1970) reported that high levels of mourning were found in mothers who were pleased to be pregnant. The researchers defined mourning as a cluster of symptoms sadness, loss of appetite, inability to sleep, increased irritability, preoccupation with the lost baby, and inability to return to normal activities.

5.4.2 Gestational age.

The research to date indicates a positive relationship between grief and gestational age at the time of the loss (Theut, Pedersen, Zaslow, & Cain, 1989; Theut, Zaslow, Rabinovich, Bartko, &

Morihisa, 1990; Tseng et al., 2017) with most studies measuring grief using the PGS (Cuisinier,

Kuijpers, Hoogduin, de Graauw, & Janssen, 1993; Franche, 2001; Goldbach et al., 1991; Janssen et al., 1997; Toedter et al., 1988). Similarly, a systematic review evaluating 22 studies that used the PGS found a link between increased gestational age and higher grief scores (Lasker & Toedter, 2000).

Evidence of a relationship between gestational age and depressive symptoms is mixed.

Some studies have found a positive association between gestational age and depression scores as 111

assessed by self-rated scales, such as the SCL-90 and the CES-D (Garel et al., 1992; Janssen et al.,

1996; Neugebauer et al., 1992a), while others failed to find a relationship (Neugebauer & Ritsher,

2005; Prettyman et al., 1993; Tunaley et al., 1993). One study found that women experiencing losses occurring under 16 weeks gestation were significantly more depressed than women with losses later in pregnancy (Thapar & Thapar, 1992), though the researchers note that there were fewer women in the later loss group, preventing valid comparisons.

Inconsistent results have also been found for gestational age and depressive disorders.

Interviewing participants in the hospital just after pregnancy loss and three months later, Garel et al.

(1992) documented that the probability of experiencing a depressive episode in the 3 months following the loss was greater in women who lost the pregnancy after 13 weeks than those with an earlier loss. In contrast, Neugebauer et al. (1997) reported that the relative risk for developing a depressive disorder did not vary significantly by gestational age.

5.4.3 Role of ultrasound examination.

Though few studies have researched this, the impact of viewing a foetus on ultrasound of has been thought to be significant. It has been posited that viewing a viable foetus on ultrasound may increase parental-foetal attachment (M. Robinson, Baker, & Nackerud, 1999), thereby leading to increased levels of psychological distress after pregnancy loss than in those who did not view viable foetal ultrasound images. This finding was supported by a study that found that male partners

(N = 57) who had viewed a viable foetus on ultrasound had increased levels of despair and difficulty coping, measured by the PGS (Johnson & Puddifoot, 1996). This study did not control for the number of scans that the men saw. Other factors likely to be relevant to viewing foetal ultrasound have largely been overlooked. For example, attitude toward the pregnancy and prior knowledge of possible problems with the foetus may affect how ultrasounds are perceived by parents. One study addressed the latter issue in a sample of 105 women undergoing additional testing at seven to 10 weeks gestation for suspected problems with their pregnancies (R. B. Beck, 1992). These pregnancies all terminated due either to elective abortion in light of confirmed foetal anomalies, or 112

early miscarriage. Using semi-structured interviews at one to two months after pregnancy loss, most women reported that viewing the foetus influenced their relationship to it, and their coping with the loss. For 9% of the sample, benefits from seeing the foetus on ultrasound were reported. These included feeling that they had confronted what was occurring by viewing the baby and feeling that this was a useful step in accepting that this pregnancy would not result in a live baby. One woman who had had a prior miscarriage without an ultrasound described her experience in this study viewing the foetus with no heartbeat as “easier” to cope with because of the visual of the non-viable baby (not seeing a heartbeat). It should be noted that there was no mention of how many women saw the foetus once it had already died.

5.5 Reproductive History

5.5.1 Prior reproductive losses.

Unsurprisingly, researchers have examined whether those experiencing perinatal loss are at increased risk of developing psychological distress if they have had a prior reproductive loss. While some researchers have not found an association between prior perinatal losses and adverse psychological outcomes in women (Broen et al., 2005; Klier et al., 2000; Lasker & Toedter, 1991;

Neugebauer et al., 1992a; Neugebauer et al., 1997; Theut, Pedersen, Zaslow, & Rabinovich, 1988) and partners (Daly et al., 1996), others have found this factor to be a significant predictor of anxiety

(Bergner et al., 2008; Gaudet, 2010), depressive symptoms (T. Friedman & Gath, 1989) and grief (Lin

& Lasker, 1996; Peppers & Knapp, 1980). In a sample of 63 women receiving a diagnosis of

‘spontaneous abortion’ at a hospital in Swansea, Thapar and Thapar (1992) found that the women who had experienced prior reproductive loss had higher levels of anxiety on the HADS. Likewise,

Franche and Mikail (1999) reported that pregnant women and their partners with a history of prior perinatal death reported significantly more pregnancy-specific anxiety and depressive symptoms than those without such history. Similar results were described by Bergner et al. (2008).

5.5.2 Infertility. 113

The inability to conceive naturally may contribute to psychological distress (Ramezanzadeh et al., 2004), and it has been reported that those experiencing the loss of a pregnancy conceived through fertility treatment are at an increased risk of developing psychological difficulties (Garel et al., 1992). One study examining grief over a one-year period among 30 couples who experienced stillbirth or miscarriage found that higher grief scores, measured by the MGS were linked with fertility issues (Tseng et al., 2017). Comparing the effects of first trimester miscarriage among 75 women undergoing assisted reproduction and 75 women who conceived naturally, Cheung et al.

(2013) found that at four and 12 weeks after the loss, the assisted reproduction group experienced significantly greater levels of anxiety and trauma, measured by the GHQ-12 and the IES-R, respectively. The reason for this difference has not yet been established, but a possible explanation is that women undergoing assisted reproduction may have higher motivation for having a baby. In fact, one study found that women undergoing fertility treatment have higher levels of maternal- foetal attachment than women who conceive naturally (Chen, Chen, Sung, Kuo, & Wang, 2011). T.

Friedman and Gath (1989), however, found no relationship between history of infertility and psychological distress one month after the loss.

5.5.3 Presence of living children.

There is inconsistent evidence regarding having living children at the time of pregnancy loss and depression and anxiety. Some researchers have reported that childlessness is associated with increased levels of Major Depression (Neugebauer et al., 1997), depression symptoms (T. Friedman

& Gath, 1989; Neugebauer et al., 1992a; Thapar & Thapar, 1992), and anxiety (Thapar & Thapar,

1992; Tunaley et al., 1993) among those experiencing a first and second trimester loss. A possible explanation for this is that nulliparous couples may be concerned about their ability to carry a pregnancy to term or to ever have a healthy baby, whereas women who have been successfully pregnant would arguably be less likely to be concerned with this. In contrast, other researchers have failed to find a link with depressive disorders (D. T. S. Lee et al., 1997), symptoms (Prettyman et al.,

1993) or anxiety symptoms (Beil, 1992; Prettyman et al., 1993). 114

Grief reactions, in contrast, have been consistently linked with childlessness (Janssen et al.,

1997; Lin & Lasker, 1996; Purandare et al., 2012). A cross-sectional study assessing women with a miscarriage, ectopic, or molar pregnancy under 16 weeks gestation measured grief symptoms 6 weeks post loss using the PGS (Purandare et al., 2012). Although this study found no differences in grief scores between type of loss (i.e. miscarriage, ectopic, or molar pregnancy), the researchers reported that women without children who suffered an ectopic pregnancy had significantly higher grief scores than those with a child.

5.6 Medical Treatment

Two facets of medical treatment after early pregnancy loss in relation to psychological distress have been researched. Firstly, it has been argued that different treatment modalities for loss in early pregnancy (described in Chapter 1) may relate to different levels of psychological distress among patients and their partners. One study conducted in the Netherlands randomized women experiencing a first trimester miscarriage to either surgical (N = 58) or expectant management (N =

64). The study found that three months after the miscarriage, the expectant management group had better overall mental health as measured by a Dutch version of the Mental Component Summary scale, but no differences in grief or anxiety symptoms measured by the PGS or STAI, respectively

(Wieringa-de Waard et al., 2002). An RCT carried out in Hong Kong, however, found no association between expectant, medical and surgical management in terms of psychological distress measured by Chinese versions of the GHQ-12, BDI and STAI (Kong et al., 2013). Another RCT performed in Hong

Kong, similarly found no significant difference between medical and surgical management groups in terms of psychological outcomes measured by Chinese versions of the GHQ, the BDI and the SCID (D.

T. S. Lee, Cheung, Haines, Chan, & Chung, 2001). This area warrants further research.

Secondly, patients’ satisfaction with care received may relate to psychological well-being, although only a few studies have directly examined this relationship. One example is a cross- sectional study by Nikčević et al. (1998), which examined whether routine follow-up care was associated with grief, depression and anxiety. Of a group of 204 women diagnosed with missed 115

miscarriage or an anembryonic pregnancy between 10-14 weeks gestation, a follow-up appointment was offered to and attended by 52 women, during which 30 felt that they had an opportunity to discuss their feelings about the miscarriage while 22 did not. Participants completed questionnaires after attending the appointment and were received within a range of 32-396 days from the diagnosis. The results showed that although there was no significant association between follow-up care and psychological distress, there were significantly more women with clinically elevated scores on the HADS among those who felt they were not given the opportunity to discuss their feelings during the appointment. The authors suggested that providing women with a follow-up that did not allow them to express their feelings, either due to medical professionals’ time constraints or their personal discomfort in counselling these women, may have had a deleterious effect on their emotional well-being. Another study found that greater satisfaction with care was associated with lower grief scores on the PGS at two months, one year and two years post-loss among 194 women and men experiencing a perinatal death (Lasker & Toedter, 1994). T. Friedman (1989), however, failed to find any association between depression measured by the present state examination in a sample of 67 women, experiencing mainly first trimester miscarriages one-month post loss.

A key systematic review of studies examining the aspects of treatment that related to satisfaction with care received after a miscarriage prior to 20 weeks completed gestation yielded four major themes (Geller et al., 2010). A perceived lack of information about the cause of the loss, future pregnancies and post-discharge care was associated with low levels of satisfaction. Similarly, the perception that the healthcare provider lacked compassion, was being insensitive and was not acknowledging the impact of the loss for the family was related to dissatisfaction with care. Types of interventions offered (e.g. laboratory tests, receiving information about the cause of the loss), their delivery and treatments not offered were also found to be relevant, as was a lack of follow-up care.

Other possible contributors to dissatisfaction with care have been identified, such as having to wait for assessment in a busy emergency department lacking privacy, being placed among other

‘healthy’ pregnant women such as on wards or in the emergency waiting room (Tsartsara & Johnson, 116

2002), perceiving that the loss is not seen as important or urgent by healthcare providers, and overlooking the psychological needs of the patient. One study examined the disparity between health care professionals’ (N = 1269) and pregnant couples’ (N = 1519) perceptions of miscarriage and postnatal depression (Kong, Lok, Lam, Yip, & Chung, 2010). The researchers found that not only did significantly more pregnant women and their spouses believe that the psychological impact of miscarriage can seriously affect women compared with health care providers, but the latter showed a lack of awareness regarding the possible psychological morbidity after miscarriage.

Although this area of research is limited, there is a growing interest in ascertaining whether satisfaction with care is indeed linked to psychological well-being among this population. This would be particularly important to establish, considering that efforts can be made to increase satisfaction with care and minimizing psychological distress, which could lead to improved psychological outcomes for patients. Taken together, the above findings highlight the possibility that a discrepancy exists between patients’ views toward perinatal loss and those of healthcare workers, which may prevent patients from receiving the type of care they need. In response to this, there has been a shift toward research on how to improve emotional care received within the healthcare system for those suffering from perinatal loss (e.g. Nikčević, 2003).

5.7 Conclusion.

This literature review highlights key risk factors studied in relation to psychological morbidity after perinatal loss, including demographic factors, psychiatric history, pregnancy-related factors, reproductive history, and medical treatment. Relatively few studies have examined these factors, and they have generally used small sample sizes, with diverse pregnancy-related factors (e.g. history of prior loss and gestational ages), using varying methodologies and very few studies have examined these factors among partners. Nevertheless, some factors, such as psychiatric history, have been consistently found to relate to psychological outcomes. The role of other variables, however, including many of the demographic variables, remains unclear. This is due, in part, to methodological issues. For example, many of the studies that make directional hypotheses regarding maternal age 117

and psychological outcomes neglect to comment on observations or theories on which these hypotheses are based. Furthermore, it has been argued that failure to use appropriate comparison groups and the failure to control for other variables, such as the presence of other living children, which is likely to correlate with maternal age, confounds findings relating to this construct and undesirable psychological outcomes after perinatal loss (Neugebauer, 2003). Although the risk factors reviewed in this chapter are important for identifying those at higher risk for developing grief, depression and anxiety after perinatal loss, they are not amenable to change, with the exceptions of medical treatment. There is a growing interest in the study and implementation of changes to the medical management of perinatal loss to encourage better psychological outcomes for patients.

This chapter touched on another key risk factor for psychological distress after perinatal loss yet to be reviewed – receiving information about the cause of the loss. A greater understanding of patients’ cognitions about perinatal loss could provide another avenue toward determining who may be at risk for developing psychological distress. The following Chapter will review the study of cognitions in relation to perinatal loss and will provide a model through which to study cognitions after perinatal loss.

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Chapter Six: Cognitive Factors and Psychological Distress after Perinatal Loss

6.1 Overview

As was mentioned in Chapter 5, it is important from both a clinical and a public health perspective, to identify individuals at risk of developing psychological distress (Klier et al., 2002; Lok

& Neugebauer, 2007). The previous chapter reviewed a variety of risk factors for developing grief, depression and anxiety after perinatal loss. Unfortunately, aside from medical treatment none of the risk factors are changeable, meaning that individuals who have these risk factors can simply be identified for further monitoring of psychological symptoms. A common theme emerging from studies examining satisfaction with care among those experiencing perinatal loss, discussed in

Chapter 5, is the wish to know the cause of the loss. In fact, there is clear evidence that patients believe this to be a critical element of post-loss care (Chalmers & Meyer, 1992; Dunn, Goldbach,

Lasker, & Toedter, 1991; Forrest, Standish, & Baum, 1982; Nikčević, Tunkel, et al., 1999; Seibel &

Graves, 1980; Tunaley et al., 1993) even well after the loss occurred (Dunn et al., 1991).

Cognitive theories of emotion view emotional states as resultant from thoughts surrounding an event (Lazarus, 1982) and cognitions serve as the bridge between events such as perinatal loss and emotions, precipitating and perpetuating outcomes like grief, depression and anxiety. According to Cognitive Behavioural Therapy, thoughts can be changed, and consequently, alters one’s emotions. Therefore, understanding the cognitions surrounding the experience of perinatal loss may allow for new screening, treatment and prevention options.

This Chapter will investigate the role of receiving information about the cause of the loss and the cognitions that stem from learning why the loss occurred in relation to grief, depression and anxiety after perinatal loss. This chapter contains three sections. First, studies exploring receiving information about the cause of the loss and cognitions associated with the loss will be reported.

Next, the Common-Sense Model of Illness Representation (CSM), a theoretical model through which to understand cognitions in the context of perinatal loss will be presented. Next, the link between 119

illness perceptions and psychological impact will be analysed. Concluding remarks will end this

Chapter.

6.2 Information About the Cause of the Loss and Cognitive Factors

Lasker and Toedter (1994) asked women and partners who encountered perinatal loss if they found particular interventions that they did or did not experience to be essential for others going through their type of loss. Of those who had an ectopic pregnancy or miscarriage before 16 weeks (N = 112), 89.3% identified knowing the reason for the loss as an essential intervention for others even though only 65.9% were actually given an explanation for the cause of the foetal death.

Likewise, a study of 22 women who experienced a miscarriage between six and 16 weeks, reported that for 91% of the sample, finding a reason for the loss was at least moderately important to them (Tunaley et al., 1993). The reasons given for this finding were that an explanation would reveal whether the woman was at fault for the loss, how to avoid future losses, and that an explanation helped with understanding and adjustment to the loss. This study also found that a medical cause for the terminated pregnancy was significantly associated with lower anxiety levels compared to women who received other explanations or no explanation.

Not only has research found that knowing the reason a pregnancy has terminated to be important to those going through this experience, but this knowledge may result in improved psychological outcomes. For instance, Nikčević et al. (2007) found that in a sample of 66 women with a missed miscarriage diagnosed at 10 - 14 weeks, those who learned the cause of the loss had significantly lower levels of anxiety on the HADS and lower self-blame than those who did not receive a cause four months later.

It is not surprising that this population would desire to know the cause of the loss. Currently, pregnant women receive much information regarding how they can promote a healthy pregnancy.

Foods and medications to avoid, how intensely to exercise, to ensure that they take prenatal vitamins and have adequate prenatal care are all promoted as the parents-to-be’s responsibility.

This may result in a sense of control over the outcome of the pregnancy for pregnant women and 120

their partners. In fact, Layne (2003) argued that an increased focus on female reproduction has resulted in the illusion of individual control, which the woman does not actually have. She claims that the women’s health movement emphasizes women being in control of their own bodies, and that this can result in self-blame for those who experience negative outcomes with their pregnancy.

Thus, the desire for causal information about the loss may be, at least in part, due to a concern that they may in some way be responsible for the loss. Often though, the reason for the loss is unknown, and women and their partners are “set adrift to define causes on their own” (Reinharz, 1988, p. 92).

This is important since forming incorrect causal inferences can hinder a sense of personal control and adjustment (Sherman & McConnell, 1995).

The wish to know the cause of the foetal death may also stem from the need to make sense of an uncontrollable, negative event, such as perinatal loss. Social psychology attribution theories maintain that people are motivated to believe that the world is controllable and predictable, and they desire to know why and how serious, unexpected, negative events occur. In the face of such events, individuals may be more likely to engage in attributional thinking. A central area of research has been whether attributing negative events with internal or external attributions is more beneficial for adjustment (Janoff-Bulman, 1979). The body of literature, however, has examined various types of trauma with different populations and methodological differences, yielding inconsistent results.

Within the field of perinatal death research, several studies have examined cognitions about the event in terms of causal attributions, paying specific attention to their relationship with emotional responses. For instance, James and Kristiansen (1995) surveyed 72 women who were 11.4 weeks gestation on average when they miscarried and the majority of whom had had a previous miscarriage. The questionnaire they created assessed the extent to which they blamed themselves, medical professionals, fate or bad luck for the loss. Women who blamed their character, or medical professionals suffered more “severe reactions” including grief, depression and anxiety. Behavioural self-blame was unrelated to the emotional impact of the loss. 121

Another study assessed 22 women several months after their first miscarriage (between 6 and 16 weeks; Tunaley et al., 1993). Women completed the Impact of Events Scale and Profiles of

Mood States questionnaire as well as an interview that measured how they felt they were coping with the loss and cognitive processes relating to their adaptation to the loss. Results indicated that stronger belief in personal control was associated with higher levels of anxiety. Having received an explanation for the loss was not associated with adjustment, but these participants had lower levels of intrusive thoughts than women who had not received an explanation. Attributing the loss to medical problems was linked to lower anxiety than attributing the loss to other factors.

Jind (2003) examined causal attributions of 110 parents who lost a baby through late miscarriage, stillbirth or infant death (up to 2 years old) over a 12-month period using the

Attribution Items scale (Downey et al., 1990). One to four weeks post loss, 52% of the parents reported being never or rarely concerned with attributing responsibility for the loss. The importance of attributing responsibility was associated with several post-traumatic symptoms, as was searching for meaning in the loss. Attributions to oneself, others, or God were positively and significantly linked to various posttraumatic symptoms. Similarly, Madden (1988) interviewed 65 women who lost their pregnancies, on average, close to 11 weeks gestation. Depression was associated with attributing the loss to the husband and age of oldest child. Internal attributions, like feeling that one could act to avoid a future miscarriage was also correlated with depression.

The research on cognitions among the perinatal loss population is characterised by a number of shortcomings. An article by Tunaley et al. (1993, p. 370) states that “the cognitions surrounding miscarriage are certainly poorly documented”. Slade (1994, p.14) went on the say that cognitions are “likely to be influential mechanisms in determining emotional responses, and yet have been given very little systematic consideration within the literature”. These statements remain relevant today. Although understanding cognitions after perinatal death is important, the research to date has been largely limited to one area of possible thoughts: those relating to the cause of the loss. The result is that other cognitions that individuals may have regarding the loss are completely 122

unknown. Furthermore, study of causal attributions in relation to perinatal loss is scarce. These studies have used a large variety of terms describing internal attributions, such as guilt, self-blame, internal characterological self-blame, internal behavioural self-blame, external attributions, and responsibility. Often, these terms are not properly defined or operationalised, leaving doubt as to whether these studies are in fact examining the same constructs (Kiecolt-Glaser & Williams, 1987).

Nor are there agreed upon measures to research cognitions after perinatal loss. Measures used include interviews and questionnaires and tend to have limited, if any psychometric information reported (e.g. Clauss, 2009; Downey, Silver, & Wortman, 1990; Madden, 1988; Warsop, Ismail, &

Iliffe, 2004). Finally, this line of research is based on an unclear empirical foundation. There is conflicting evidence whether attributing causes of negative events to the self is adaptive, which on the one hand may provide a sense of control over negative life events, but on the other hand may foster self-blame leading to depression and learned helplessness (Abramson, Seligman, & Teasdale,

1978), and it is unclear whether behavioural self-blame is beneficial.

6.3 The Common-Sense Model of Illness Representation

The Common-Sense Model of illness Representation (CSM) was established by Leventhal,

Meyer, and Nerenz (1980) and proposes that individuals construct a cognitive representation or understanding of their illness that guides behaviour. The CSM is an extension of the parallel processing model (Leventhal, 1970), was developed from studies based on the Fear-Drive model which maintains that fear motivates individuals to adopt behaviours needed to reduce or eliminate that fear, leading to reinforcement of these behaviours (Dollard & Miller, 1950). These studies examined the effects of high and low fear messages relating to tetanus and cigarette smoking on attitude and behaviour change in university students (Leventhal, Singer, & Jones, 1965; Leventhal &

Watts, 1966; Leventhal, Watts, & Pagano, 1967). Participants were randomly assigned to conditions receiving either high or low fear messages and either specific or unspecific action plans. High fear messages involved graphic and personal language accompanied by colour images of the effects stemming from tetanus and cigarette smoking, while low fear messages were technical and 123

impersonal and were paired with black and white images. All action plans presented participants with statistics about the effectiveness of inoculations. However, half the participants received specific action plans that included extra information on how to go about getting inoculated (e.g. location and hours of the university health service). Findings indicated that high fear messages were more effective in changing attitudes towards inoculation than low fear messages (Leventhal et al.,

1965). This change, however, was not sustained (Leventhal & Niles, 1965). The greatest impact on health behaviours (e.g. reducing or quitting smoking) occurred when the fear messages were paired with a message containing an action plan, such as informing participants of services available at the student health centre. The proportion of individuals acting in response to the action plan were identical, regardless of whether the fear message was strong or mild. Furthermore, neither the fear message alone, nor the action plan alone, resulted in a change in health behaviours (Leventhal et al.,

1965; Leventhal & Watts, 1966; Leventhal et al., 1967). Since the combination of action plan and low or high fear messages produced action over time, and as subjective feelings of fear and fear induced attitude change faded within 48 hours, the researchers concluded that the action plan was linked not to fear, but to some changed way of thinking about or representing the health threat, thus highlighting the central role of cognitive processes. This data led to the development of the CSM

(Leventhal et al., 1980).

The CSM, outlined in Figure 1 posits that individuals create illness representations, or lay beliefs, generated through the analysis and interpretation of concrete and abstract information they have about an illness (Hagger & Orbell, 2003; Lau, Bernard, & Hartman, 1989). These representations are unique to the individual and based on their own personal experiences with the illness, their schemas, culture, and so on. These representations then guide health-related behaviour. Outcomes are appraised in terms of their effectiveness and lead to changes to the original illness representations and/or to changes in coping. Information is processed cyclically as representations and coping strategies are continually being generated and assessed, leading to the reformulation of the representations themselves (Leventhal, Nerenz, & Purse, 1984). This feedback 124

loop forms a process of self-regulation that ultimately promotes behaviour adherence. Parallel processing of cognitive and emotional representations of the illness occurs. Illness representations, then, involve cognitive as well as emotional domains, which can impact on emotional outcomes.

Illness perceptions are proposed to include five cognitive dimensions: identity, timeline, consequences, cause and controllability, and one non-cognitive dimension: emotional perceptions.

Identity is concerned with respondents’ ideas about the frequency with which symptoms are endorsed as part of the illness. Individuals are considered to have stronger illness identity the more symptoms are endorsed as part of the illness. Timeline assesses individuals’ perceptions of the likely duration of their health problems, and whether they believe their symptoms are constant and persistent or wax and wane. The consequences dimension reflects the individual’s beliefs about impact the illness has on various aspects of their life. The cure/control component represents the extent to which the individual believes that the illness or condition is amenable to cure or control.

Illness coherence refers to the extent to which the individual has a coherent understanding of their illness. The emotional representations domain indicates individuals’ emotional responses to their illness. Finally, the cause component represents what individuals believe are the possible causes of their illness.

The CSM has been used to explain reactions to illness in various populations with the use of the Illness Perception Questionnaire – Revised (IPQR; Moss-Morris et al., 2002) The IPQ-R has been widely used to assess individuals diagnosed with medical conditions such as heart failure (Hallas,

Wray, Andreou, & Banner, 2011), Huntington’s disease (Arran, Craufurd, & Simpson, 2014), different types of cancer (Dempster et al., 2011; Gray et al., 2014; Llewellyn, Weinman, McGurk, & Humphris,

2008), chronic fatigue syndrome and rheumatoid arthritis (Moss-Morris & Chalder, 2003), to name a few. The IPQ-R has also examined illness perceptions of individuals with a range of psychological conditions such as eating disorders (Holliday, Wall, Treasure, & Weinman, 2005), schizophrenia

(Lobban, Barrowclough, & Jones, 2005), and depression (Cabassa, Lagomasino, Dwight-Johnson,

Hansen, & Xie, 2008). The IPQ-R been used to assess not only the individual with the disorder, but 125

also carers, relatives and lay peoples’ perceptions (Figueiras & Alves, 2007; Fortune, Smith, &

Garvey, 2005).

6.4 Illness Perceptions and Psychological Impact

The link between illness perceptions and psychological impact, namely depression and anxiety, has been examined in several studies. The findings of these studies are fairly consistent and have shown a link between negative illness perceptions and higher levels of depression and anxiety.

For example, Jopson and Moss-Morris (2003) assessed the relationship between illness perceptions in patients diagnosed with multiple sclerosis (MS). They found that high illness identity, endorsing a cyclical timeline, and a lack of illness coherence predicted higher levels of anxiety, and that low levels of personal control, beliefs that MS has serious consequences, and attributing MS to psychological causes predicted higher levels of depression.

Rutter and Rutter (2007) examined the relationship between illness perceptions and psychological impact longitudinally in a sample of patients with irritable bowel syndrome (IBS) at three time points over a 12-month period, each separated by 6 months. They found that for anxiety at Time 3, illness perceptions at Times 1 and 2 explained a significant proportion of the variance.

Illness perceptions at Time 1 explained a significant proportion of the variance in depression scores at Time 3. Furthermore, the consequence subscale at Time one was a unique significant predictor of depression and anxiety 12 months later. In other words, the more severe the consequences of the

IBS were perceived to be, the greater the anxiety and depression subsequently experienced.

Lobban, Barrowclough, and Jones (2005) assessed illness perceptions in a sample of patients with schizophrenia and found significant links between illness perceptions and psychological outcome. Those with strong illness identities were more likely to be anxious and depressed. Anxiety and depression were also associated with the belief that their symptoms would likely last for a long time and those who perceived their symptoms as cyclical were more likely to be anxious. Lower illness coherence and low levels of treatment control were associated with high levels of depression. 126

To summarize, high illness identity, perceptions of more serious consequences, perceptions of lower levels of control over the illness, belief that the disease will last longer and will be cyclical in nature, and lower illness coherence have been associated with elevated levels of depression and anxiety in a variety of populations. Although illness representations have been studied in relation to various conditions, surprisingly, they have not been examined in those experiencing perinatal loss.

They have been assessed in populations with gynaecological and reproductive conditions, such as women undergoing cervical cancer screening, and women with fibroids. A review by Benyamini

(2009) presents evidence for taking a gendered view when applying the CSM to health concerns. She argues that men and women process health threats differently and that the illness representations that each gender forms are important in understanding how they process and cope with a given health concern. Among the numerous health issues she reviews, Benyamini specifically discusses the topic of infertility and miscarriage and notes that women tend to perceive infertility more negatively than their partners (Benyamini, Gozlan, & Kokia, 2009). This suggests that there is scope to apply the

CSM to women and partners experiencing perinatal loss.

6.5 Conclusion.

This literature review examines the study of cognitions in relation to psychological morbidity after perinatal loss. It is not surprising that with the strong evidence from cognitive psychology that thoughts give rise to emotions, researchers have examined this link in the context of perinatal loss.

Overall, associations between cognitions, almost exclusively focussing on causal attributions and grief, depression and anxiety have been found after perinatal loss, however, this area of research is scarce and plagued by multiple methodological flaws, such as unclear empirical foundations and measures lacking validation. In light of these limitations, clear conclusions cannot be drawn from the data, but this research has laid the groundwork for exploring cognitions in the context of perinatal loss more broadly.

At this point, a model with empirical support and well validated measures are required in order to advance the research of cognitions related to perinatal loss and psychological outcomes. 127

The CSM has been presented as a comprehensive way of conceptualizing illness, explaining how thoughts, feelings and behaviours may result from health-related stimuli. Clinically, this knowledge could help identify those at risk of developing grief, depression and anxiety. A greater understanding of the thoughts these patients have about their losses can have implications for how cognitive therapy may serve to help this population cope with perinatal loss. The study to be described in the following chapters will attempt to address these issues, while providing a new framework through which to conceptualize cognitions in relation to psychological outcomes in those experiencing perinatal loss.

Figure 6.1. The Common-Sense Model of Illness Representation.

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Chapter Seven: Rationale and Aims

7.1 Rationale

Losses occurring in the first trimester of pregnancy are common. Although the majority of women appear to cope well with this loss, evidence suggests that a significant minority of women go on to experience elevated levels of grief, depression and anxiety, which generally last for about six months post-loss, but can last even longer (Athey & Spielvogel, 2000; Frost & Condon, 1996; Lok &

Neugebauer, 2007). The picture regarding partners’ psychological distress after perinatal loss is unclear due to the paucity of research among this population. However, preliminary data indicates that some men may also be at risk of developing grief, depression and anxiety, and that these symptoms may not resolve quickly (Beutel et al., 1996; Daly et al., 1996; Puddifoot & Johnson, 1997).

Although a number of risk factors are thought to contribute to the development of psychological distress after EPL, these have been under-researched and studies have often lacked rigour (Lok & Neugebauer, 2007). Numerous, serious methodological flaws make it difficult to accurately interpret findings from research conducted thus far on psychological distress after perinatal loss. The use of imprecise terms such as ‘perinatal loss’ is a key example, as it impossible to interpret whether EPL are comparable to late pregnancy losses, or even losses of a baby born at term (Brier, 2008). Small sample sizes, the use of different measures of psychological distress between studies, the general neglect of partners, and the lack of research in general of grief, depression, and anxiety symptoms are critical problems as outlined in Chapter 3 (Brier, 2008; Klier et al., 2002). In sum, this area of study lacks longitudinal and rigorous investigation of both women and men experiencing EPL, as well as a theoretically informed research design in order to identify who is at risk for developing psychological distress after this phenomenon.

Post-loss cognitions have been proposed as a potentially relevant factor meriting further research (James & Kristiansen, 1995; Tunaley et al., 1993). This is not surprising considering that cognitions give rise to emotions, and guide behaviour according to cognitive behavioural psychology. 129

Cognitions have rarely been the focus of perinatal research and have largely been studied in terms of attributions, or the cause of the loss (Beil, 1992; Hale, 2007). However, there are many other facets of cognitions and idiosyncratic perceptions of the loss that go beyond why the loss occurred that are simply unknown that this point. For example, what do these individuals think the loss means to them, and what are the consequences of such a loss? Learning about the broader cognitive experience of EPL would allow for greater understanding of the post loss experience in general.

In summary, there is a need to better identify who is at risk of developing psychological distress so that appropriate support can be offered. By using specific definitions of the type of loss being studied and validated measures, and paying special consideration to cognitions and partners, results from such studies may be valuable in screening, diagnosing and treating women and partners post-EPL.

The current study aimed to address these needs by prospectively exploring the prevalence and course of grief, depression and anxiety after EPL, while also taking into account risk factors that may contribute in their manifestation. Using the Illness Perception Questionnaire – Revised, the

Common-Sense Model of Illness Representation was employed as a theoretical foundation to examine cognitions about the loss. This knowledge will add to our understanding of what constitutes a typical course of psychological distress.

This study researched the psychological distress of women and partners experiencing EPL in a sample recruited from the Royal Women’s Hospital (RWH) Early Pregnancy Assessment Service

(EPAS). The EPAS is accessible to women under 14 weeks completed gestation, and henceforth the term EPL will refer to pregnancy losses occurring in that period. Participants completed questionnaires within the two weeks post-loss and again three months later.

7.2 Aims and Hypotheses

Aim 1: To establish and describe the prevalence and course of grief, depression and anxiety in the three months following EPL in women and their partners. 130

Hypothesis 1: It was hypothesised that levels of grief, depression and anxiety would be

highest shortly after the loss was diagnosed and would decrease over time for women

and men.

Aim 2: To investigate illness perceptions of women experiencing EPL in the three months following

EPL. This study will examine illness perceptions, measured by the IPQ-R, among women experiencing

EPL and will determine whether illness perceptions predict psychological distress.

Hypothesis 2: more severe illness perceptions measured as high illness identity,

perceptions of more serious consequences, low perceived control over EPL, and low

illness coherence, will be associated with higher levels of grief, depressive, and anxiety

symptoms at Time 1.

Hypothesis 3: more severe illness perceptions measured as high illness identity,

perceptions of more serious consequences, low perceived control over the EPL, and low

illness coherence, will predict higher levels of grief, depressive, and anxiety symptoms at

Time 2.

Aim 3: To investigate illness perceptions of partners experiencing EPL in the three months following

EPL. This study will examine illness perceptions, measured by the IPQ-R, among partners experiencing EPL and will determine whether illness perceptions predict psychological distress.

Hypothesis 4: more severe illness perceptions measured as perceptions of more serious

consequences, low perceived control over EPL, and low illness coherence, will be

associated with higher levels of grief, depressive, and anxiety symptoms at Time 1.

Hypothesis 5: more severe illness perceptions measured as perceptions of more serious

consequences, low perceived control over the EPL, and low illness coherence, will

predict higher levels of grief, depressive, and anxiety symptoms at Time 2.

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Chapter Eight: Methods

8.1 Overview

This Chapter will describe the methods used to carry out the current longitudinal, questionnaire-based study. First the recruitment process will be described. Next, the measures used to assess participants’ responses will be detailed. These were questionnaires assessing demographics, grief, depression, anxiety, and illness perceptions. The procedure used to carry out the study at two time points will be outlined. Finally, a brief guide to the statistical analyses used will be presented.

8.2 Participants

Participants were recruited from the Early Pregnancy Assessment Service (EPAS) at the Royal

Women’s Hospital (RWH), a large teaching hospital located in Melbourne, Australia, between April and December 2014. This service runs weekdays mornings and accepts women with pain and/or bleeding who are at or less than 13 weeks 6 days gestation. Referrals are not required. Women in need of emergency review or who are clinically unstable are excluded from attending the EPAS. An

EPAS assessment may involve diagnostic tests, ultrasound scanning, counselling and management planning. Some patients may require a number of visits before a diagnosis is made. Inclusion criteria for this study were (1) 18 years or older, (2) women and/or partners experiencing EPL attending the

EPAS service (it was not a requirement that both parties participate), and (3) fluency in English.

Same-sex couples were eligible, although none participated.

8.3 Measures

The measures used encompassed demographic characteristics, depression, anxiety, grief, and illness perceptions. See Appendix A for the full questionnaire used in this study; however, due to licencing restrictions, only five of the State-Trait Anxiety Inventory items can be viewed.

8.3.1 Demographics.

This questionnaire is a self-report measure that acquires general personal information. The questionnaire also contains information about participants’ reproductive history. The Time One (T1) 132

and Two (T2) questionnaires differ slightly in the demographics section. At T2, only questions which could not have changed between T1 and T2 (e.g. “what is your date of birth?”) were omitted, while others that may have changed between T1 and T2 (e.g. “what is your current living situation?”) were included. Questions about participants’ (Toedter, Lasker, & Janssen, 2001) reproductive history over the past three months were added in the T2 questionnaire.

8.3.2 Grief.

The Perinatal Grief Scale – Short Version (PGS; Potvin, Lasker, & Toedter, 1989; Toedter et al., 1988), the most widely used measure to assess perinatal grief, is a 33-item self-report measure which differentiates between typical and longer-lasting, severe grief reactions unique to those experiencing perinatal loss. Participants are asked to score the items in relation to how they feel at the present time. They rate the extent to which they agree or disagree with the items on a 5-point

Likert scale ranging from 1 to 5 (total range 33 to 165), with higher scores indicating more intense grief. Scores above 91 suggest a high level of grief (Toedter et al., 2001). The PGS has been factor analysed, yielding three subscales. The “Active grief” subscale measures normal grief reactions and includes items regarding sadness and missing the baby, such as “I feel depressed” and “I am grieving for the baby”. The other two factors pertain to severe grief reactions. The “Difficulty coping” subscale measures functional impairment (e.g. “I can’t keep up with my normal activities” while the

“Despair” subscale measures long-lasting effects of the loss (e.g. “I feel guilty when I think about the baby”).

The PGS has demonstrated high internal consistency (α = .95), and good construct and convergent validity (Toedter, Lasker, & Janssen, 2001). Since grief and depression include many similar features, it is important to note that the “Difficulty Coping” subscale has the strongest correlation (r = .77, p < .001) with depression. The other subscales are less strongly correlated with depression, indicating that these subscales represent different dimensions of grief reactions which are unable to be assessed by measures of depression (Potvin et al., 1989).

8.3.3 Depression. 133

Depressive symptoms were measured with the Centre for Epidemiological Studies

Depression Scale (CES-D; Radloff, 1977). The CES-D is a widely used and well validated 20-item self- report measure which assesses cognitive, affective and somatic symptoms of depression in the past week. Participants rate the frequency of each symptom on a 4-point Likert scale scored from 0 to 3

(total score range 0 to 60), with higher scores indicating greater levels of depressive symptomatology. In order to determine prevalence rates of depression, a cut-off score of 16 and greater has been proposed to indicate likely cases of depression (ref). The CES-D is able to identify clinically depressed individuals from community samples. This measure was chosen because of its psychometric properties, its ability to assess the general population and its suitability in measuring depressive symptoms among those experiencing EPL (e.g. Neugebauer & Ritsher, 2005; Rowlands &

Lee, 2010).

8.3.4 Anxiety.

The State Trait Anxiety Inventory (STAI; Spielberger, Gorsuch, & Lushene, 1970) is a 40-item self-report measure consisting two separate scales measuring levels of anxiety at the time of testing

(state) as well as enduring trait anxiety. State anxiety reflects a transitory emotional state, which is expected to vary with time. In contrast, trait anxiety “refers to relatively stable individual differences in anxiety-proneness” (Spielberger et al., 1970). Participants rate the extent to which the statements describe how anxious they feel in the moment (state), and generally (trait). Items are scored on a 4- point Likert scale from 1 to 4 (total score range 20 to 80 per scale). Scores above 40 are considered cases of anxiety. This tool has high internal consistency and construct validity and has been used to detect anxiety symptoms in women and their partners experiencing EPL (Beutel, Deckardt, von Rad,

& Weiner, 1995; Beutel et al., 1996).

8.3.5 Illness perceptions.

Illness perceptions were assessed with the widely used Illness Perceptions Questionnaire –

Revised (IPQ-R; Moss-Morris et al., 2002). The original form of the questionnaire contains 3 sections.

The first section contains a list of 14 symptoms and assesses which symptoms participants identify as 134

being part of their illness, known as illness identity, scored as either 0 (no) or 1 (yes). The second section consists of seven subscales assessing illness representations including “time-line”

(acute/chronic and cyclical), “consequence”, “control” (personal and treatment control), “illness coherence” and “emotional representation”. Using a 5-point Likert scale ranging from 1 to 5, participants indicate their degree of agreement with specific statements for each subscale. The third section is the “cause” subscale. This subscale lists 18 possible causes for the illness and asks participants to rate the extent to which they consider a given cause as having caused their illness.

Finally, participants list the three most important causes for their illness, which are not limited to reasons listed in the cause subscale. Although there is no total IPQ-R score, inter subscale correlations show a logical pattern. For example, beliefs in treatment and personal control are inversely related to pessimistic beliefs about timeline and consequences of the illness (Moss-Morris et al., 2002).

The authors of the IPQ-R state that the questionnaire can be adapted to different conditions

(e.g., chronic fatigue, chronic pain, HIV, couples experiencing infertility and women undergoing cervical cancer screening), and different populations (e.g., people with the actual condition, carers, spouses, lay people). For example, the authors of the IPQ-R state that "researchers should feel free to modify the causal and identity scales in order to suit particular illnesses, cultural settings or populations” (Moss-Morris et al., 2002). Furthermore, the scoring instructions on the IPQ-R website states that the items can be adapted by inserting the name of the illness as required. As each IPQ-R subscale is treated as an independent variable, it is not necessary that the entire IPQ-R be used; rather, researchers can choose which subscales are logical to include in their studies.

For the purpose of this study, several adaptations were made to the IPQ-R. The term ‘illness’ was changed to ‘pregnancy loss’. Not all subscales were appropriate for this study. For example, the

‘timeline’ (acute/chronic and cyclical) dimensions were not relevant as EPL is a distinct event and will not be persisting at Time 2. ‘Treatment control’, which includes items such as ‘my treatment will be effective in curing my illness’, was also not considered relevant to EPL. Furthermore, only the female 135

partners completed the identity subscale and these items were changed to reflect the symptoms of pregnancy loss. The partner’s version of the IPQ-R was reworded so that items assess the impact of the EPL on their own cognitive representations. The wording was also changed to reflect that the symptoms were those of their female partner’s, when relevant. For example, “the course of my symptoms depends on me” was changed to “the course of my partner’s symptoms depends on me”.

The possible causes subscale retained the original items from the IPQ-R but also included some items pertaining specifically to pregnancy loss based on review of the literature. For example,

“problem with the baby” was included as a possible cause, not in the original IPQ-R. Items relevant to being in a relationship were also included (e.g. my partner’s behaviour).

8.4 Procedure

8.4.1 Recruitment procedure.

Upon diagnosis of EPL, EPAS nurses discussed the diagnosis and treatment options with patients and provide patients with reading material about EPL including treatment options and what to expect after the loss. A brief flier containing general information about the study and inclusion criteria for participation was added to this reading material. These fliers were also posted in public areas of the EPAS. During the appointment, nurses showed participants and partners, when present, the flier and asked them if they were agreeable to have the researcher contact them by phone in approximately two weeks to discuss study participation. The patients were assured that they would not be contacted before then in order to be sensitive to their needs at that time. Nurses then passed on the potential participants’ information to the researcher.

After two weeks, the researcher called potential participants, provided them with information about the study and discussed what participation entailed. Participants were made aware that participation would occur at two time points, one at two to four weeks after the EPL diagnosis, and again 12- 14 weeks after the EPL diagnosis. This time interval was chosen in order to reduce the likelihood of attrition, while allowing enough time for possible change in levels of psychological symptoms and in cognitions about the EPL. When the researcher contacted potential 136

female participants, they were asked if their partner would be willing to speak to the researcher about participating in the study. If so, the researcher was given the partner’s contact information and discussed with them the study and what participation involved. Occasionally, the first point of contact was initiated by the EPAS patient (via information found on the flyer). Patients and their partners who met the inclusion criteria were offered the opportunity to participate in the study.

Participants indicated whether they preferred to complete the survey online (created through

Qualtrics) or on hard copy, in which case the researcher acquired their post or email address.

8.4.2 Two weeks after EPL – T1.

Those who preferred the online option were emailed the web address of the survey from the researcher’s hospital email address, as well as an ID number and password which participants used to log onto and complete the survey to ensure that the survey responses were anonymous and confidential. The website only showed the participants the questionnaire after they had read the participant information/consent form, and ticked the box stating that they read and understood the information and have agreed to participate in the study. Participants who preferred to complete a hard copy of the survey were mailed the consent form and survey with a postage paid envelope to return to the researcher.

8.4.3 Three months after EPL – T2.

At T2, the researcher sent the participants the surveys in the preferred manner which they had indicated previously, using the same methods described above.

8.4.4 Delayed responses.

Responses were considered delayed if researchers did not receive completed questionnaires within 10 days of mailing or emailing them to participants. Researchers contacted participants by their preferred method of communication to remind them to complete the questionnaires if they still wished to participate.

8.5 Ethical Considerations 137

As is clear from the introduction of this thesis, some individuals may experience increased levels of psychological distress, and may not be coping well with the loss. Therefore, participants’ scores on certain measures were screened to identify those deemed to be “at risk” of psychological distress. Participants scoring over 91, and/or those who endorsed the item pertaining to suicidal ideation on the PGS were contacted by the Principal Investigator to assess risk and offer outside support. This study received approval from the Royal Women’s Hospital Ethics Committee.

8.6 Intended Statistical Analysis

It was expected that for Aim 1, prevalence rates were calculated by summing the number of participants scoring above the cut-offs on the grief, depression and anxiety measures, respectively, and calculating the percentage for women and men, separately. Scoring above the cut-off scores on these measures is indicative of being likely to meet diagnostic criteria for a given disorder if they were assessed by a mental health professional. The course and duration were determined by comparing those scoring above the cut-off for the PGS, CES-D and STAI-S at T1 and T2 for women and men, separately using McNemar’s test. For Aims 2 and 3, multiple regressions were conducted to determine the extent to which illness perceptions predicted the participants’ levels of grief, depression and anxiety, measured by the PGS, CES-D and STAI-S respectively.

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Chapter Nine: Results

9.1 Overview

This chapter contains five sections. The first outlines participation completion rates. The second describes the participant characteristics. The third presents the results for Aim 1, including the prevalence rates of grief, depression and anxiety at both time points, as well as their trajectories between T1 and T2 for both women and partners. The third and fourth sections describe the results for Aims 2 and 3, respectively. These involve examination of the relationship between illness perceptions and psychological outcomes at both time points for women (Aim 2) and men (Aim 3).

The chapter concludes with an overall summary of the study findings.

9.2 Data Preparation and Questionnaire Completion Rates

Online responses were retrieved from the Qualtrics website. The data was then exported to

Microsoft Excel. The data from the hard copy questionnaires was then manually added into the relevant Excel spreadsheets by the researcher. Analyses were conducted using the software package

Minitab 18. A total of 71 women’s and 28 men’s questionnaires were received at T1. Of the women’s responses, three contained significant amounts of missing data, (i.e. omitting entire sections/pages of the questionnaire), and were excluded from any analysis, yielding a total of 68. Of the 68, two were hard copy and the remainder were entered in Qualtrics. Only two of the 28 men submitted hard copy questionnaires. At the second time point, 58 women completed the questionnaire, all of which were done online. Eighteen men submitted their responses, but one had several pages of data missing, and was therefore excluded, leaving a total of 17 men. Retention rates were 85.3% for women and 60.7% for men. In total, 338 fliers were distributed to patients. As 99 participants for the whole sample were recruited, the proportion of participants recruited from the eligible pool of those approached is 29.3%.

9.3 Sample Characteristics

9.3.1 Characteristics of the sample at time 1. 139

Sample characteristics at Time 1 are presented in Table 9.1. The average age for women was

33.81 years (SD = 5.3). The majority of women were of Australian background, university educated, and working full or part-time. Most were married, living with their spouse with no children. Most women had never received any mental health diagnosis, and few were experiencing psychological symptoms at the time of completing the questionnaire. The average age for partners was 34.5 years

(SD = 4.97). Partner demographics were similar to those of the female sample, with the following exceptions. The majority of men were working full-time and none were experiencing mental health symptoms at the time of completing the questionnaire.

Table 9.1

Demographic Characteristics for Women (n = 68) and Partners (n = 28) – T1

Women n (%) Partners n (%)

Age: M (SD) 33.81 (5.33) 34.5 (4.97)

Completed education level

Year 10 1 (1.47) 2 (7.14)

Year 12 6 (8.82) 3 (10.7)

University undergraduate 21 (30.9) 14 (50)

degree

University postgraduate degree 31 (45.6) 6 (21.43)

Trade certificate 2 (2.94) 0

TAFE certificate 5 (7.35) 3 (10.7)

Other 2 (2.94) 0

Employment status

Full-time 37 (54.4) 23 (82.1)

Part-time 20 (29.4) 1 (3.57) 140

Women n (%) Partners n (%)

Unemployed 2 (2.9) 2 (7.14)

Full-time home duties 9 (13.2) 2 (7.14)

Relationship status

Married 50 (73.5) 23 (82.1)

Single/never married 2 (2.84) 1 (3.57)

Partnered/de facto/engaged 16 (23.5) 4 (14.3)

Current living situation

Living with spouse/partner and 40 (58.8) 17 (60.7)

no children

Living with spouse/partner and 28 (41.2) 11 (39.3)

children

Number of children

Natural children *

0 41 (60.29) 16 (57.1)

1 18 (26.47) 9 (32.1%)

2 5 (7.35) 3 (10.7%)

3 2 (2.94) 0

Step-children

0 65 (95.6) 28 (100)

1 1 (1.47)

2 2 (2.94)

Ethnicity

Aboriginal/Torres Strait 1 (1.47) 0

Islander 141

Women n (%) Partners n (%)

Australian 39 (57.4) 21 (75%)

New Zealander 8 (11.8) 3 (10.7%)

Other 20 (29.41) 4 (14.37%)

Previous mental health diagnosis

Yes 10 (14.7) 1 (3.6%)

Depression 6 (8.82) 1 (3.6%)

Depression and anxiety 2 (2.94) 0

Other 2 (2.94) 0

No 58 (85.29) 27 (96.4%)

Current mental health symptoms 4 (5.88) 0

9.3.1.1 Reproductive history and current loss (T1).

Reproductive history and characteristics of this pregnancy loss are shown in Tables 9.2 and

Table 9.3, respectively. The majority of women and men had experienced one early miscarriage, with no prior reproductive losses. The sample as a whole viewed this pregnancy as intended, with the majority conceiving in under three months, with conception occurring without the use of reproductive technology. The average length of gestation, at the time of the loss was 61.9 days or

8.84 weeks (SD = 14.45 days; range = 3 – 12 weeks) for women, and 61.1 days or 8.72 weeks (SD =

14.48 days; range = 5 - 12 weeks) for men. The distribution of participants’ losses by week of gestation is depicted in Figure 9.1. The majority of the sample had not seen the foetus on ultrasound, underwent surgical management for the loss, and were not using support resources such as online support like forums or contact with a therapist for the loss.

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Table 9.2

Reproductive Characteristics for Women and Partners at T1

Type of loss Women n (%) Partners n (%)

Molar pregnancy 0 (100) 1 (3.57)**

Ectopic

0 64 (94.1) 27 (96.4)

1 4 (5.88) 1 (3.57)

Early miscarriage *

0 3 (5.45) 2 (7.14)

1 42 (76.36) 23 (82.1)

2 7 (12.73) 2 (7.14)

3 3 (5.45) 1 (3.57)

Late miscarriage 0 0

Neonatal death 0 0

Note. * denotes variable with missing data. ** denotes a discrepancy within a couple.

6 Women

4 Men Numberparticipants of 2

0 3 5 6 7 8 9 10 11 12 Weeks gestation

Figure 9.1. Number of participants with pregnancy losses by weeks of gestation 143

Table 9.3

Characteristics of this Pregnancy Loss for Women and Partners at T1

Women n (%) Partners n (%)

Method of conception

Spontaneously 63 (92.6) 26 (92.9)

Ovulation induction 2 (2.94) 1 (3.57)

IVF 2 (2.94) 1 (3.57)

Unsure 1 (1.47) 0

Intended pregnancy

Yes 57 (83.8) 25 (89.3)

No 11 (16.2) 3 (10.7)

Length of time to conceive *

< 3 months 40 (59.7) 16 (57.1)

3-6 months 15 (22.4) 8 (28.6)

6-9 months 4 (5.97) 1 (3.57)

9-12 months 3 (4.48) 1 (3.57)

> 12 months 5 (7.46) 2 (7.14)

Difficulty conceiving *

Very difficult 2 (2.99) 0

Difficult 4 (5.97) 4 (14.3)

Somewhat difficult 12 (17.9) 0

Neutral 16 (23.9) 8 (28.6)

Somewhat easy 4 (5.97) 1 (3.57)

Easy 13 (19.4) 4 (14.3)

Very easy 16 (23.9) 11 (39.3) 144

Women n (%) Partners n (%)

Ultrasound viewing

Yes 27 (39.7) 11 (39.3)

No 41 (60.3) 17 (60.7)

Management

None 26 (38.2) 11 (39.3)

Medical 8 (11.8) 2 (7.14)

Surgical 34 (50) 15 (53.6)

Support resources

No 60 (88.24) 28 (100)

Yes 8(11.76)

Note. * denotes variable with missing data.

9.3.2 Characteristics of the sample at Time 2.

Overall, there was little change in the demographic variables assessed at both time points

(T2 demographics are displayed in Table 9.4). Among women, 56.9% were trying to conceive again with 29.3% becoming pregnant again since the prior loss. Only 5.17% women experienced another pregnancy loss between T1 and T2. In addition, 17.2% were participating in support resources.

Among the partners, 52.9% were trying to conceive again, with 29.4% having already done so. None of the partners experienced another pregnancy loss since the first questionnaire, and none were participating in support resources.

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Table 9.4

Sample Characteristics of Women and Partners at T2

Women (n = 58) Men (n = 17)

Relationship status

Married 39 (67.24) 13 (76.5)

Single/never married 2 (3.45) 0

Partnered/de facto/engaged 17 (29.31) 4 (23.5)

Current living situation

Living with spouse/partner and 31 (53.5) 8 (47.1)

no children

Living with parents 1 (1.72) 0

Living with spouse/partner and 26 (44.8) 9 (52.9)

children

Natural children

0 34 (58.6) 8

1 16 (27.6) 7 (41.2)

2 7 (12.1) 2 (11.8)

3 1 (1.72) 0

Step children

0 56 (96.6) 17 (100)

1 2 (3.45)

Previous mental health diagnosis

Yes 7 (12.07) 1 (5.88)

Depression 4 (6.7) 1 (5.88)

Anxiety 1 (1.72) 146

Women (n = 58) Men (n = 17)

Depression and anxiety 1 (1.72)

and other

Other 1 (1.72)

No 51 (87.9) 16 (94.1)

Current mental health symptoms

Yes 2 (3.44) 0

No 56 (96.6) 17 (100)

Accessing Support

Yes 10 (17.2) 0

No 48 (82.8) 17

Trying to conceive again

Yes 33 (56.9) 9 (52.9)

No 25 (43.1) 8 (47.1)

Pregnant

Yes 17 (29.3) 5 (29.4)

No 41 (70.7) 12 (70.6)

Another loss

Yes 3 (5.17) 0

No 55 (94.8) 17 (100)

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9.4 Aim 1: Determining the Prevalence and Course of Grief, Depression and Anxiety for Women

and Partners at T1 and T2

9.4.1 Prevalence for women at T1 and T2.

The number of women scoring above the cut-off scores, described in the Chapter 8, for grief

(PGS), depression (CES-D) and anxiety (STAI-S) were separately calculated by Minitab. This was done for T1 and T2 separately. Table 9.5 shows the proportions of women scoring above the cut-off for grief, depression and anxiety. As can be seen, the prevalence of grief at T1 was 20.6%, while the prevalence rates of depression and anxiety were 54.4% and 52.9%, respectively. At T2, 3.6%, 10.7% and 25% scored above the threshold for grief, depression and anxiety, respectively.

Table 9.5

Prevalence of Grief, Depression and State Anxiety at T1 and T2 for Women

Variable N N > cut-off Estimated Proportion 95% CI

PGS T1 68 14 20.6 11.7, 32.1

PGS T2 56 2 3.6 .4, 12.3

CES-D T1 68 37 54.4 41.9, 66.5

CES-D T2 56 6 10.7 4, 21.9

STAI-S T1 68 36 52.9 40.4, 65.2

STAI-S T2 56 14 25.0 14.4, 38.4

Note. N refers to the total number of participants at each time point. CI = confidence interval.

9.4.2 Prevalence for partners at T1 and T2.

The same method to calculate the results for women, described above, was used for partners. Results, presented in Table 9.6, show that none of the partners scored above the cut-off score for grief at either time point. At T1, the prevalence for depression was 32.1%, but this dropped to 0% at T2, while 25% scored above the cut-off for anxiety at T1, which fell to 5.9% at T2. 148

Table 9.6

Prevalence of Grief, Depression and State Anxiety at T1 and T2 for Partners

Variable N N > cut-off Estimated Proportion 95% CI

PGS T1 28 0 0 0, 10.1

PGS T2 17 0 0 0, 16.2

CES-D T1 28 9 32.1 15.9, 52.4

CES-D T2 17 0 0 0, 16.2

STAI-S T1 28 7 25 10.7, 44.9

STAI-S T2 17 1 5.9 .1, 28.7

Note. N refers to the total number of participants at each time point. CI = confidence interval.

9.4.3 Course of grief, depression and anxiety for women.

In order to detect whether there was a significant change between T1 and T2, three

McNemar’s tests were performed: one for grief, one for depression and one for anxiety. These analyses were conducted for women and partners separately. McNemar’s test considers matched samples, or individuals who participated in both time points, comparing how many participants changed in terms of whether they scored above or below the cut-off scores between T1 and T2.

Table 9.7 presents McNemar’s test results.

Fifty-six women participated at both time points. At T1, eight scored above the cut-off for the PGS, and at T2, two scored above the cut-off. Although there was a decrease in the proportion between T1 and T2, McNemar’s test demonstrated that this was not significant (p = .11). For depression, the number of women scoring above the cut-off dropped 41% from 29 at T1 to 6 at T2.

McNemar’s test determined that there was a statistically significant difference in the proportions between T1 and T2 (p = .00). Similarly, for anxiety, McNemar’s test revealed the estimated difference of proportions between T1 (N = 28) and T2 (N=14) to be 25% (p = .001). Therefore, the hypothesis that psychological distress among women would decrease with time was upheld. 149

Table 9.7

McNemar’s Test of Difference of Matched Percentages (T1 – T2) for Women

Variable Estimated difference (%) 95% CI p

PGS 10.7 -1.8, 23.2 .11

CES-D 41.1 25.5, 56.7 <.001

STAI-S 25 9.9, 40.1 .001

Note. CI = confidence interval.

9.4.4 Course of grief, depression and anxiety for partners.

The same method used to calculate the course of grief, depression and anxiety for women was used for partners. The number of partners scoring above the cut-offs at both time points and

McNemar’s test results are shown in Table 9.8. Seventeen partners participated at both time points.

Course remained stable for grief as there were no partners scoring above the threshold at either time point. The number of men scoring above the cut-off on the STAI-S decreased from four at T1 to one at T2. McNemar’s test showed the 17.6% decrease over time was not significant (p = .38). For depression, Method 4 described by Lloyd (1990) was used to calculate a confidence interval because the sample size was small and the prevalence was zero at T2. The decrease over time from 9 to 0 was 23.6%, which was not significant (p = .13). Therefore, for partners, the hypothesis that psychological distress would decrease was not upheld.

Table 9.8

McNemar’s Test of Difference of Matched Percentages (T1 – T2) for Partners

Variable Estimated difference (%) 95% CI p

CES-D 23.6 -2.71, 49.9 .13

STAI-S 17.6 12.6, 47.9 .38 Note. CI = confidence interval. 150

9.5 Aim 2: Predicting Psychological Distress from Illness Perceptions for Women at T1 and T2

9.5.1 Preparation of data and control variables.

Preliminary multiple regression analyses were performed in which illness perception dimensions were entered as predictor variables and grief as the outcome variable was calculated without any controls for women and men at T1 (see Tables C.1 – C.3). The models predicted 46.5% of the variance for women at T1, and 31.57% for men at T1. The data was checked and did not violate the assumptions of normality. In order to incorporate control variables, multiple regressions were then carried out to control for age and number of children (see Tables C.4 – C.12), but these did not significantly predict psychological distress and did not change the independent contribution of illness perceptions. Next, trait anxiety was used as a control. The resulting analyses showed a significant contribution of trait anxiety to psychological distress, yet illness perceptions continued to significantly predict psychological distress in most cases. The following sections will describe these results in detail. Therefore, to test Aim 2, multiple regressions were conducted using trait anxiety as a control variable.

9.5.2 Predictors of psychological distress in women at T1.

In order to test the hypothesis that more severe illness representations will be associated with higher levels of grief on the PGS at Time 1, a multiple regression analysis was carried out with illness perception dimensions, namely, identity, consequences, control and illness coherence, and trait anxiety as predictor variables. Grief as measured by PGS scores was the outcome variable. The model explained 67.9% of the variance (F (5, 62) = 26.2, p < .01). Trait anxiety positively predicted grief scores (regression coefficient = 1.05, p < .01). Among illness perceptions, consequences and illness coherence were predictive of grief, however, the relationships between these variables were counter to the hypothesis. There was a negative relationship between consequences and grief scores (regression coefficient = -1.58, p = .001) and a positive one between illness coherence

(regression coefficient = 1.28, p = .008) and grief scores. In other words, higher grief was associated 151

with perception of better consequences, and better illness coherence. The multiple regression results and the coefficients are presented in Tables 9.9 and 9.10, respectively.

Table 9.9

Multiple Regression Predicting Grief from Illness Perceptions and Trait Anxiety for Women – T1

Variable df F p

Regression 5 26.2 <.001

STAI-T 1 32 <.001

Identity 1 1.26 .27

Consequences 1 12.9 .001

Control 1 1.8 .18

Coherence 1 7.43 .008

Error 62

Total 67

Note. df = degrees of freedom.

Table 9.10

Coefficients of Predictors of Grief for Women – T1

Variable Coefficient S.E. 95% CI t p

Constant 48.6 15.9 16.8, 80.4 3.06 .003

STAI-T 1.05 .19 .68, 1.42 5.66 <.001

Identity 1.21 1.08 -.94, 3.36 1.12 .27

Consequences -1.58 .44 -2.45, -.7 -3.59 .001

Control -.51 .38 -1.27, .25 -1.34 .18

Coherence 1.28 .47 .34, 2.21 2.73 .008

Note. S.E. = standard error; CI = confidence interval. 152

To test the contribution of illness representations to depression levels, a second multiple regression analysis (see Table 9.11), using trait anxiety, identity, consequences, control, and illness coherence as predictor variables, and depression (CES-D scores) as the outcome variable, revealed that independent variables explained 46.7% of the variance for depression, (F (5, 62) = 10.9, p < .01).

Trait anxiety (regression coefficient = .44, p < .01) was a significant predictor of depression. Illness coherence (regression coefficient = .8, p = .005) also predicted depression, but these variables are positively related, meaning that high illness coherence predicted higher depression scores.

Coefficients are presented in Table 9.12.

Table 9.11

Multiple Regression Predicting Depression from Illness Perceptions and Depression – Women T1

Variable Df F p

Regression 5 10.9 <.001

STAI-T 1 15.9 <.001

Identity 1 1.25 .27

Consequences 1 .22 .64

Control 1 .03 .85

Coherence 1 8.43 .005

Error 62

Total 67

Note. df = degrees of freedom.

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Table 9.12

Coefficients of Predictors of Depression for Women – T1

Variable Coefficient S.E. 95% CI t p

Constant -10.3 9.4 -28.9, 8.47 -1.1 .28

STAI-T .44 .11 .22, .65 3.99 <.001

Identity .71 .63 -.56, 1.98 1.12 .27

Consequences -.12 .26 -.64, .39 -.46 .64

Control .042 .22 -.41, .49 .19 .85

Coherence .8 .28 .25, 1.35 2.9 .005

Note. S.E. = standard error; CI = confidence interval.

A third multiple regression analysis was carried out to test the hypothesis that more severe illness representations will be associated with higher levels of anxiety on the STAI-S at Time 1 (see

Table 9.13). Trait anxiety, identity, consequences, control and illness coherence, were entered as predictor variables, while anxiety measured by the STAI-S was the dependent variable. The total model explained 63.4% of the variance of anxiety (F (5, 62) = 21.44, p < .01). Trait anxiety (regression coefficient = .8, p < .01) and illness identity (regression coefficient = 1.2, p = .049) significantly predicted state anxiety (see Table 9.14).

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Table 9.13

Multiple Regression Predicting State Anxiety from Illness Perceptions and Trait Anxiety for Women -

Variable df F p

Regression 5 21.44 <.001

STAI-T 1 59.99 <.001

Identity 1 4.04 .049

Consequences 1 .63 .43

Control 1 .34 .56

Coherence 1 .17 .68

Error 62

Total 67

Note. df = degrees of freedom.

Table 9.14

Coefficients of Predictors of State Anxiety for Women – T1

Variable Coefficient S.E. 95% CI t p

Constant 5.17 8.84 -12.5, 22.8 .58 .561

STAI-T .80 .103 .59, 1 7.75 <.001

Identity 1.20 .598 .007, 2.4 2.01 .049

Consequences -.19 .244 -.68, .29 -.8 .429

Control .12 .211 -.3, .54 .58 .564

Coherence .11 .26 -.41, .63 .41 .683

Note. S.E. = standard error; CI = confidence interval.

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9.5.3 Predictors of psychological distress in women at T2.

The third hypothesis was that more severe illness perceptions measured as high illness identity, perceptions of more serious consequences, low perceived control over the EPL, and low illness coherence, will predict higher levels of grief, depressive, and anxious symptoms measured by the PGS, CES-D and STAI-S respectively, at Time 2. As with hypothesis 2, separate multiple regressions were calculated for grief, depression and anxiety at T2, controlling for trait anxiety.

In order to examine the predictors of grief, multiple regression analysis with trait anxiety, identity, consequences, control, and illness coherence as independent variables, and grief, measured as PGS scores, as the dependent variable showed that the model explained 67.6% of the variance (F

(5, 52) = 21.7, p < .001). Interestingly, high grief scores were significantly predicted by less serious consequences (regression coefficient = -1.48, p < .001). Trait anxiety also predicted grief scores

(regression coefficient = .97, p < .001). Multiple regression results are shown in Tables 9.15 and coefficients in Table 9.16.

Table 9.15

Multiple Regression Predicting Grief from Illness Perceptions and Trait Anxiety for Women – T2

Variable df F p

Regression 5 21.7 <.001

STAI-T 1 42.0 <.001

Identity 1 0 .96

Consequences 1 16.1 <.001

Control 1 .24 .62

Coherence 1 1.32 .26

Error 52

Total 57

Note. df = degrees of freedom. 156

Table 9.16

Coefficients of Predictors of Grief for Women – T2

Variable Coefficient S.E. 95% CI t p

Constant 50.2 12.7 24.6, 75.7 3.94 <.001

STAI-T .97 .15 .66, 1.27 6.48 <.001

Identity -.04 .81 -1.66, 1.58 -.05 .96

Consequences -1.48 .37 -2.21, .74 -4.02 <.001

Control -.14 .29 -.71, .43 -.49 .62

Coherence .50 .43 -.37, 1.37 1.15 .26

Note. S.E. = standard error; CI = confidence interval.

For depression, a multiple regression analysis (Table 9.17) with predictor variables of trait anxiety, identity, consequences, control, and illness coherence, and depression scores on the CES-D as the outcome variable revealed a model that explained 58.9% of the variance (F (5, 52) = 14.9, p <

.001). Although trait anxiety significantly predicted depression scores (regression coefficient = .6, p <

.001), none of the illness perception variables were significant predictors (Table 9.18).

To determine the contribution of illness perceptions on anxiety, a multiple regression analysis with trait anxiety, identity, consequences, control, and illness coherence as independent variables, and anxiety measured by the STAI-S was the outcome variable was carried out. Table 9.19 displays the results. Trait anxiety (regression coefficient = .78, p < .001) and control (regression coefficient = -.33, p = .036) significantly predicted state anxiety, while consequences trended on significance (regression coefficient = -.37, p = .069), and was negatively related to state anxiety. The overall model explained 71.9% of the variance (F (5, 52) = 26.7, p = < .001). Findings of the coefficients is shown in Table 9.20.

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Table 9.17

Multiple regression predicting depression from illness perceptions and trait anxiety for women at T2

Variable df F p

Regression 5 14.9 <.001

STAI-T 1 50.7 <.001

Identity 1 .07 .79

Consequences 1 2.42 .13

Control 1 .5 .48

Coherence 1 .06 .80

Error 52

Total 57

Note. df = degrees of freedom.

Table 9.18

Coefficients of Predictors of Depression for Women – T2

Variable Coefficient S.E. 95% CI t p

Constant -4.55 7.23 -19.1, 9.95 -.63 .53

STAI-T .60 .08 .43, .77 7.12 <.001

Identity -.12 .46 -1.05, .8 -.27 .79

Consequences -.33 .21 -.75, .1 -1.55 .13

Control -.12 .16 -.44, .21 -.71 .48

Coherence .062 .25 -.43, .56 .25 .80

Note. S.E. = standard error; CI = confidence interval.

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Table 9.19

Multiple Regression Predicting Anxiety from Illness Perceptions and Trait Anxiety for Women – T2

Variable df F p

Regression 5 26.7 <.001

STAI-T 1 95.9 <.001

Identity 1 .28 .60

Consequences 1 3.45 .069

Control 1 4.62 .036

Coherence 1 .01 .932

Error 52

Total 57

Note. df = degrees of freedom.

Table 9.20

Coefficients of Predictors of State Anxiety for Women – T2

Variable Coefficient S.E. 95% CI t p

Constant 18.4 6.81 4.73, 32.1 2.7 .009

STAI-T .78 .08 .62, .94 9.79 <.001

Identity .23 .43 -.64, 1.1 .53 .6

Consequences -.37 .2 -.76, .03 -1.86 .069

Control -.33 .15 -.63, .02 -2.15 .036

Coherence .02 .23 -.45,.49 .09 .93

Note. S.E. = standard error; CI = confidence interval.

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9.5.3.1 Summary of results for Aim 2.

For women at T1, consequences and illness coherence were significant predictors of grief while illness coherence was a significant predictor of depression was predicted by illness coherence.

Counter to the hypothesis, it was “better” illness perceptions that predicted grief and depression scores. As was expected, state anxiety was predicted by high illness identity. At T2, consequences predicted grief and state anxiety. Again, the relationships were negative. State anxiety was also predicted by low levels of control. None of the illness perception dimensions were associated with depression scores at this time point. Trait anxiety was a significant predictor of psychological distress at both T1 and T2. The findings suggest that some of the dimensions of illness perceptions predict psychological distress at T1 and T2, but, not always in the direction that had been predicted.

Therefore, hypotheses 2 and 3 are partially supported.

9.6 Aim 3: Predicting Psychological Distress from Illness Perceptions for Partners at T1 and T2

9.6.1 Predictors of psychological distress in partners at T1.

To test the fourth hypothesis that more severe illness perceptions, namely perceptions of more serious consequences, low perceived control over EPL, and low illness coherence, will be associated with higher levels of grief, depressive, and anxious symptoms at time 1, separate multiple regressions were run for grief, depression and anxiety at T1, controlling for trait anxiety among partners.

To test whether grief was predicted by illness perceptions and trait anxiety, a multiple regression analysis was calculated with trait anxiety, consequences, control and illness coherence as predictor variables (Table 9.21). Grief was the outcome variable, measured by the PGS. The model predicted 54.7% of the variance. Overall, the analysis was significant (F (4, 23) = 6.94, p = .001). Grief was predicted by trait anxiety (regression coefficient = .84, p = .002) and beliefs about consequences

(regression coefficient = -1.51, p = .024). Table 9.22 displays the regression coefficients.

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Table 9.21

Multiple Regression Predicting Grief from Illness Perceptions and Trait Anxiety for Partners – T1

Variable df F p

Regression 4 6.94 .001

STAI-T 1 11.7 .002

Consequences 1 5.82 .024

Control 1 .43 .52

Coherence 1 1.79 .19

Error 23

Total 27

Note. df = degrees of freedom.

Table 9.22

Coefficients of Predictors of Grief for Partners – T1

Variable Coefficient S.E. 95% CI t p

Constant 45.4 18.4 7.3, 83.4 2.47 .021

STAI-T .84 .25 .33, 1.35 3.43 .002

Consequences -1.51 .63 -2.81, -.22 -2.41 .024

Control .34 .52 -.73, 1.41 .66 .52

Coherence .62 .46 -.34, 1.57 1.34 .19

Note. S.E. = standard error; CI = confidence interval.

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To test the contribution of illness perceptions on depression, a multiple regression was carried out using trait anxiety, consequences, control and illness coherence as predictor variables and depression as the dependent variable. This analysis yielded a significant result (F (4, 23) = 4.81, p

= .006), but this was due to the contribution of trait anxiety (regression coefficient = .53, p = .002).

None of the illness perception subscales were significantly predicted by depression scores. Multiple regression results and coefficients can be viewed in Tables 9.23 and 9.24, respectively.

To determine the contribution of illness perceptions on anxiety, trait anxiety, consequences, control and illness coherence were entered as independent variables and anxiety, or STAI-S scores, as the outcome variable in a multiple regression analysis (see Table 9.25). Similar results were found for state anxiety among men at T1. The overall test was significant (F (4, 23) = 16.6, p < .001) and revealed that 74.3% of the variance was explained by the model. Trait anxiety significantly predicted state anxiety scores (regression coefficient = .84, p < .001; see Table 9.26).

Table 9.23

Multiple Regression Predicting Depression from Illness Perceptions and Trait Anxiety for Partners – T1

Variable df F p

Regression 4 4.81 .006

STAI-T 1 11.78 .002

Consequences 1 1.94 .18

Control 1 .83 .37

Coherence 1 .08 .78

Error 23

Total 27

Note. df = degrees of freedom.

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Table 9.24

Coefficients of Predictors of Depression for Partners – T1

Variable Coefficient S.E. 95% CI t p

Constant 9.3 11.6 -14.7, 33.2 .8 .43

STAI-T .53 .16 .21, .85 3.43 .002

Consequences -.55 .4 -1.37, .27 -1.39 .18

Control -.30 .33 -.98, .38 -.91 .37

Coherence -.08 .29 -.68, .52 -.28 .78

Note. S.E. = standard error; CI = confidence interval.

Table 9.25

Multiple Regression Predicting State Anxiety from Illness Perceptions and Trait Anxiety for Partners –

Variable df F p

Regression 4 16.6 <.001

STAI-T 1 51.8 <.001

Consequences 1 .36 .56

Control 1 .09 .76

Coherence 1 2.87 .10

Error 23

Total 27

Note. df = degrees of freedom.

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Table 9.26

Coefficients of Predictors of State Anxiety for Partners – T1

Variable Coefficient S.E. 95% CI t p

Constant 11.98 8.76 -6.2, .1 1.37 .19

STAI-T .84 .12 .6, 1.09 7.19 <.001

Identity -.18 .30 -.8, .44 -.6 .56

Consequences .076 .25 -.44, .59 .31 .76

Control -.37 .22 -.83, .08 -1.69 .1

Coherence 11.98 8.76 -6.2, .1 1.37 .19

Note. S.E. = standard error; CI = confidence interval.

9.6.2 Predictors of psychological distress in partners at T2.

The fifth hypothesis, that more severe illness perceptions defined as perceptions of more serious consequences, low perceived control over the EPL, and low illness coherence, will predict higher levels of grief, depressive, and anxious symptoms at time 2, was tested. Due to the small number of partners who participated at T2, best subsets regressions (see King, 2003) were calculated for grief, depression and anxiety. This method compares all possible models that can be created based on the given predictors. The researcher must use their judgement to select the most appropriate model or models. This requires balancing the benefits of including the greatest number of predicted variables possible, while also keeping the R2 and adjusted R2 as high as possible.

Therefore, researchers must examine the output generated by Minitab, manually inspecting each combination of variables to make the best decision about which model to use. Due to the small sample size, the number of predictors used should be limited. Best subsets regression for grief using trait anxiety, consequences, control and illness coherence were entered as predictor variables and grief as the outcome variable showed that a model consisting of consequences and control best predicted grief scores (See Table C.13). Analysis of variance (Table C.14) revealed an overall 164

significant model (F (2, 14) = 4.66, p = .028) which explained 40% of the variance (Table C.15).

Control (regression coefficient = 2.19, p = .033) and consequences (regression coefficient = -1.58, p =

.017) were both significant predictors of grief (Table C.16).

In order to determine the contribution of illness representations on depression, best subsets regression was calculated with trait anxiety, consequences, control and illness coherence were entered as predictor variables and depression as the outcome variable. Results showed one model with two variables that contained the highest R2 and adjusted R2 that best predicted depression

(Table C.17). A model containing trait anxiety and coherence explained 44.3% of the variance (F (2,

14) = 5.56, p = .017) where both trait anxiety (regression coefficient = .27, p = .017) and illness coherence (regression coefficient = .27, p = .13) positively predicted levels of depression (see Tables

C.18, C.19, and C.20).

In order to test whether illness perceptions contribute to state anxiety levels, best subsets regression for anxiety (Table C.21), in which state anxiety was the dependent variable and trait anxiety, consequences, control and illness coherence were entered as independent variables, showed the model of trait anxiety to best predicted state anxiety scores. Further, analysis of variance, see Table C.22, revealed an overall significant model (F (1, 15) = 75, p < .001) which explained 83.3% of the variance (Table C.23) (regression coefficient = 1, p < .001; see Table C.24).

9.6.2.1 Summary of results for Aim 3.

For partners at T1, consequences negatively predicted grief scores. At T2, control positively predicted grief, while consequences negatively predicted grief. A model containing trait anxiety and illness coherence were predictive of depression scores. State anxiety was predicted by trait anxiety, but no illness representation dimensions. As was the case with women, trait anxiety was a significant predictor of psychological distress at all time points. The results partially confirm hypotheses 4 and

9.7 Chapter Summary 165

This chapter reported demographic characteristics of the sample and the results for the three aims of this study. Analyses for Aim 1 established prevalence rates for women and partners at both time points. The course of psychological distress was determined. For women, depression and anxiety significantly dropped over time. Although there was a decrease in grief among women and psychological distress among men, these declines were not significant. Therefore, the first hypothesis was partially supported.

The second aim of the study was to explore women’s illness perceptions in the 3 months following EPL and to determine whether illness perceptions predict psychological distress. The data showed that for women, some illness perception dimensions appear to be relevant in predicting psychological distress. Of note, consequences predicted grief at both time points and coherence was predictive of grief and depression and T1. Unexpectedly, it was a perception of better consequences and a better sense of illness coherence that were predictive of psychological distress. Trait anxiety, used as a control, was predictive of psychological distress in all the models tested.

The third aim of the study set out to examine the illness perceptions of partners in the three months post-EPL and whether they predict grief depression and anxiety. Results indicated that consequences negatively predicted grief, while control positively predicted grief scores at T1. No other illness perception dimensions were predictive of psychological distress. Using best subsets regression, results showed that at T2, trait anxiety, consequences and control were predictive of grief and trait anxiety predicted state anxiety. Illness coherence and trait anxiety positively predicted depression scores. Contrary to the hypothesis, it was perception of better illness representations that predicted psychological distress. The Discussion Chapter that follows will provide a detailed examination of the results.

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Chapter 10: Discussion

10.1 Overview

The main aims of this study were to determine the prevalence and course of psychological distress after early pregnancy loss, and to examine the relationships between this distress and illness perceptions. This study contributes to the body of research by establishing prevalence rates for grief, depression and anxiety, and extends prior research by exploring an array of cognitions about the loss using well-validated tools. In this chapter, a synthesis of the main findings will be presented, followed by an analysis of the strengths and limitations of the study. The clinical implications of the results will be discussed and avenues for future research will be suggested.

10.2 Summary of the Findings

10.2.1 Prevalence and course of grief, depression and anxiety.

The prevalence of grief, depression and anxiety for women at T1 were 20.6%, 54.4%, and

52.9%, respectively. These rates dropped to 3.6% for grief, 10.7% for depression and 25% for anxiety at T2. Comparisons with previous studies are limited, since only four prior studies have reported the prevalence of grief symptoms. The current study’s grief prevalence rates are most comparable to those found by Neugebauer and Ritsher (2005), who reported a similar prevalence of 20.3%, however, this was at six to eight weeks post-loss. At two weeks post-loss, the investigators found a prevalence rate almost double that of the current study (Neugebauer & Ritsher, 2005). Furthermore, those investigators used a sample who had experienced of a variety of losses, from 12 weeks up to

28 weeks gestation. Although Neugebauer and Ritsher found no relationship between gestational age and grief, other studies have shown a link between increased gestational age and grief symptoms (Tseng et al., 2017). Therefore, it is possible that gestational age may account for the discrepancy between Neugebauer and Ritsher (2005) and the present study’s findings.

In a study of 125 women attending a hospital for a pregnancy loss prior to 20 weeks, Beutel,

Deckardt, et al. (1995) reported prevalence rates of grief of 20%, and combined grief and depressive 167

reactions of 20% “immediately after [the] miscarriage” using the Munich Grief Scale. The timing of the symptom measurement, the fact that later losses were included in the study, and differences in measures used, may all be reasons for the differences between these and the current study’s results.

The other two studies reporting grief prevalence rates consist of one study considering a variety of perinatal losses including miscarriage, stillbirth and neonatal death (Hutti et al., 2017) and one retrospective study of miscarriage prior to 16 weeks gestation (Hutti et al., 1998).

Levels of depressive symptoms in the current study are much higher than the range of 4% -

36.2% at one to four weeks post-loss reported by other researchers (Broen et al., 2006; Cumming et al., 2007; Engelhard et al., 2001; C. Lee et al., 1996; Neugebauer et al., 1992a; Neugebauer & Ritsher,

2005; Nikčević, Tunkel, et al., 1999; Prettyman et al., 1993). The study with the highest depressive symptom prevalence rate to date in the literature is that of Neugebauer et al. (1992a), who reported a rate of 36.2%. The sample in this study consisted of 62.5% first trimester losses, defined as under

13 weeks completed gestation and 37.5% second trimester losses under 26 weeks completed gestation. Analyses showed that gestational age at the time of the loss was positively associated with depressive symptoms. Furthermore, 85% percent of the sample was assessed 7 – 15 days post- loss (Neugebauer et al., 1992a). In light of these study characteristics, one would expect to find a higher prevalence of depressive symptoms in Neugebauer et al. (1992a)’s study. However, they used a much more stringent cut-off of 30 for the CES-D, than the current study, which would be expected to yield a lower prevalence rate than the cut-off of 16 used in this study.

Although prior studies have not examined anxiety rates at exactly the same time point as the current study, research to date indicates that at one month post-loss, anxiety symptom rates range between 23% - 66% (Cumming et al., 2007; C. Lee et al., 1996; Nikčević, Tunkel, et al., 1999). The results from the current study fall within this range. One particularly comparable study to the current one used a sample of 143 women with a loss occurring between 10-14 weeks gestation

(Nikčević, Snijders, et al., 1999). The women were offered additional testing to determine the cause of the EPL. Based on the results, women were then divided into two groups – those who had an 168

explanation for the loss, and those who did not. Results showed that at four weeks post-loss, when a cause for the loss was discovered, 23% were considered cases on the HADS (Zigmond & Snaith,

1983) using the more stringent cut-off score of 11, which is considered to reflect severe anxiety.

Among those who did not learn the cause of the loss, 32% scored above the threshold for severe anxiety; however, using the less rigorous cut-off of 8 on the HADS, the prevalence increased to 66%.

Data from the current study showed that, depression and anxiety levels fell significantly from T1 to T2. Although grief levels dropped, this change was not statistically significant. Other studies have reported significant decreases in grief by three months (Ridaura et al., 2017; Tseng et al., 2017). There are a number of possible reasons for this discrepancy. Firstly, those studies included late losses in their sample. Furthermore, the levels of grief reported in the current study are lower than those reported elsewhere in the literature, thus providing less scope for significant reductions in symptoms. A further possible explanation for this finding is lack of power: if the sample of this study were larger, perhaps a difference over time would be detectable. It is also possible that those scoring above thresholds for psychological distress in the current study may have more serious or unrelenting grief reactions like those described by Lin and Lasker (1996). This may be due to differences in personality, social support or other factors. As there were no further assessment points, this is not able to be determined. Further research is required to clarify the reasons behind these findings. There has been some consensus that levels of depressive and anxiety symptoms are highest soon after the loss, possibly for up to six months post-loss but that there is a general decrease over time (Beutel, Deckardt, et al., 1995; Broen et al., 2005, 2006; Janssen et al., 1996; C.

Lee et al., 1996; Thapar & Thapar, 1992). The results of the current study are in accordance with this.

Overall, the results of the present study show a decrease in psychological distress, a pattern reported in the majority of studies in the literature.

In the current sample of women prevalence of grief was lower, but depression was higher compared to prior studies in this field, while the prevalence of anxiety was comparable. However, the many methodological issues in the literature described throughout this thesis, including the use 169

of varied assessment points and heterogeneous samples are major factors that prevent accurate comparisons between studies. Nevertheless, the current study provides additional data on the rate and general trajectory of psychological distress after EPL.

Among partners, at T1 the percentages of participants scoring above the cut-offs were 0 for grief, 32.1 for depression, and 25 for anxiety. At T2 there were no scores above the cut-off for grief or depression, and the prevalence of anxiety was 5.9%. Prevalence rates for grief among male partners after EPL have not yet been described in the literature. Therefore, this is the first study to establish a foundation of information on which to build in future studies.

The current study found much higher prevalence rates of depression and anxiety for partners at T1 than one other study reporting male prevalence (Cumming et al., 2007), but lower levels than Daly et al. (1996), who reported a prevalence of 36%. It should be mentioned, though, that this was “within the first 6 weeks” of the loss, and data is not available regarding the amount of time that passed since the loss, or the length of gestation used in the studies by Cumming et al. and

Daly et al. Therefore, it is unclear whether the time point of assessment or the sample are comparable to the current study’s.

Only four studies have reported the prevalence of depressive symptoms in men. Kong,

Chung, et al. (2010) found elevated depression symptoms in 7% of their sample at 12 weeks post- loss using the BDI. The current study, however, found no cases of depression at that time point.

Kong, Chung, et al. (2010) defined “miscarriage” as a loss occurring before 24 weeks gestation, and a later loss might explain higher depressive rates than those reported in the current study.

Comparisons with other studies reporting depressive symptom prevalence are difficult due to the varied assessment points used by other researchers.

In the current study, depression and anxiety declined with time. Although the prevalence of depression and anxiety fell considerably by 23.6% and 17.6% respectively, these reductions did not reach statistical significance. Although there is little prior research with which to draw parallels,

Kong, Chung, et al. (2010) reported a significant decline in symptom levels by three months. Overall, 170

the literature indicates that psychological distress generally diminishes with time. The results of the current study are in line with this observation.

It is noteworthy that the current study considered trait anxiety as a control variable in investigating Aims 2 and 3. Trait anxiety is a personal characteristic known to increase susceptibility to a variety of psychological disturbances. Thus, it is not surprising that trait anxiety in the present study was strongly associated with grief, depression and anxiety. The results from this study highlight the importance of trait anxiety in the manifestation of psychological distress post-EPL.

In summary, women reported higher levels of distress at both times points than men, but both declined. This is in line with research showing that a variety of factors may contribute to a general decline in psychological distress over time, like the use of successful coping mechanisms, and resilience leading to an adjustment to a loss over time (Folkman, 2001). The current study’s results must be interpreted cautiously. The small number of male participants raise questions about the generalizability of the results. It is difficult to evaluate the findings in this study against the existing body of research as there are so few studies examining male prevalence rates of psychological distress, and because prior studies have not assessed partners at similar time points to the current study. Furthermore, there are no studies exclusively examining early losses among male partners.

10.2.2 Illness perceptions and psychological distress.

For women at T1, consequences and illness coherence predicted grief, while depression was influenced by illness coherence. Furthermore, high illness identity predicted state anxiety. At T2 consequences predicted grief. There was trend for a negative association between consequences and state anxiety but this failed to reach significance. Control was also inversely related to state anxiety. At T1 for partners, control positively predicted grief, but consequences negatively predicted grief. Models that included illness coherence and consequences paired with trait anxiety predicted depression scores. 171

This study is the first to assess illness perceptions after EPL, and the second study to examine the contribution of illness perceptions to grief generally. As illness perceptions have never been investigated among those with EPL, comparisons to the illness perception literature in general will be made where relevant.

In some cases, illness perceptions predicted psychological distress in ways typically seen in the literature. For example, it was hypothesized that high illness identity and low control would predict worse state anxiety. Indeed, this was found for women at T1 and T2, respectively. These findings are consistent with prior research. For example, Hagger and Orbell (2006) reported that high illness identity and control were associated with increased anxiety, measured by the STAI among a sample of women with a diagnosis of an abnormal cervical screening, and that illness identity and control were associated with anxiety measured by the HADS and STAI in a sample of women undergoing colorectal screening. Similar results have been reported elsewhere using samples of women diagnosed with primary cicatricial alopecia and women and men with cardiovascular disease (Chiang, Bundy, Griffiths, Paus, & Harries, 2015; Greco et al., 2014). These results also resonate with the theory of assumptive world views, which maintains that core beliefs that the world is a controllable place are shattered when individuals are faced with a traumatic event (Janoff-Bulman, 1992). Prior research on bereaved parents indicates a relationship between lack of control and grief intensity (Matthews & Marwit, 2004; Wickie & Marwit, 2001).

However, in most instances, illness representations predicted psychological distress counter to the directions originally proposed and commonly seen in the literature. In other words, in this study, “better” illness perceptions predicted worse psychological distress. The first noteworthy observation is that illness coherence positively predicted levels of grief and depression among women. This differs from prior findings that worse illness coherence is related to negative emotions

(Hagger & Orbell, 2006). For example, in a cross-sectional study by Joshi, Dhungana, and Subba

(2015) using a sample of 379 people with Type 2 diabetes, illness coherence measured by the IPQ-R significantly predicted BDI-II scores. High illness coherence involves having a firm understanding of 172

an illness or condition. Perhaps fully understanding that the pregnancy will not progress, a healthy baby will not be born, and the individual will not become a parent may contribute to more negative feelings like grief and depression. In contrast, maybe those who have not fully come to terms with what has happened may be thinking about the details of the loss, or wondering what happened and how it occurred. It is possible that these individuals would not have reached the stage where they have fully acknowledged the loss, thereby buffering them from more negative emotions.

This explanation is in accordance with core concepts of theoretical approaches to grief described in Chapter 4. One such concept is that of confrontation-avoidance. M. S. Stroebe and

Schut (1999) indicated in the DPM that effective coping with grief involves confrontation and avoidance of multiple stressors over time. Therefore, it is possible that shortly after EPL, women who have adopted a form of avoidance from loss-oriented stressors may be experiencing lower illness coherence and lower levels of grief and depression. Instead, they may be engaging more in restoration-oriented stressors, like attending to life changes, distracting themselves from their grief, denying their grief, or engaging in new or different behaviours. This might correspond with less intense grief, at least soon after the loss. Furthermore, engaging in restoration-oriented stressors could explain the link between lower illness coherence and lower depression scores. Engaging in new activities, for example, that are not directed at focussing on the loss, may relate to lower depressive symptoms. Alternatively, coping by engaging heavily in loss-oriented stressors could account for higher levels of grief and depression soon after the loss. Having full comprehension of the loss and what it entails may inherently involve a degree of confrontation of loss-oriented stressors like grief work, telling others about the loss, planning a memorial or similar and more. It may be that this is coupled with having a better understanding of what has occurred with the pregnancy and baby.

Another possible explanation is that ruminating about details surrounding the loss and not focussing on the meaning of the loss, may be related to lower illness coherence, and in turn, lower depression and grief than those who are actively confronting the loss. Engaging in rumination, as has 173

been mentioned, can be considered a form of avoidance away from a greater threat (understanding that the baby is gone forever), involving focusing on details about the loss, while confronting the loss itself may give rise to greater illness coherence and consequently, grief and depression (M. Stroebe et al., 2007). Recent research has conceptualized ruminative processes after loss in terms of adaptive and maladaptive types. Although more research is needed to delineate the beneficial and harmful forms of rumination, it seems plausible that engaging in adaptive forms of rumination, like self-reflection, when one uses cognitive problem solving to relieve distress (Treynor et al., 2003), and not focussing on the complete meaning of the loss itself could explain the results of the present study.

Another unanticipated finding of the present study was that the perception of worse consequences predicted lower levels of grief in women and partners at both time points. This is contrary to prior research and to the CSM which indicates that having worse consequences from the illness leads to worse physical and mental health. Vollmann, Scharloo, Langguth, Kalkouskaya, and

Salewski (2014) demonstrated that in 118 patients with chronic tinnitus, the relationship between optimism and depression, measured by the HADS, was partially mediated by high consequences and low control and low illness coherence.

The EPL experience can be thought of as a chain of events. Something happens to cause the loss, which in turn has consequences for the parents. While thinking of the initial events that led to the loss logically involves thinking about what caused it (causal factors), concerns of its consequences makes individuals address EPL’s aftermath. According to the CSM, illness perceptions guide coping and the appraisal of outcomes. Therefore, it is possible that those who perceived the consequences of the loss as serious were in the process of implementing coping mechanisms that relate to low grief scores. Perhaps, similar to the explanation given for the illness coherence results, this led to increased attention to restoration-oriented stressors and less focus on the grief itself.

Alternatively, problem-focussed coping, which involves employing methods to try to improve the situation may have been frequently used by this group. In fact, problem-focussed coping has often 174

been associated with better psychological outcomes (Moore, Bombardier, Brown, & Patterson,

1994) and has been suggested to be useful when dealing with difficulties of bereavement that are changeable (M. S. Stroebe & Schut, 2001b). Inspection of the consequences subscale items suggests that this may have entailed strategies like working more to improve the financial hardship caused by the loss (item 10), or spending time with loved ones, which may address the item about how others may be negatively impacted by the loss and how others may perceive the woman and partner (items

9 and 11). Employing problem-focussed coping to address the particular consequences items on the

IPQ-R likely also involve some degree of increased socialization and support which would likely be correlated with lower rates of grief, depression and anxiety. From a behavioural activation standpoint, these actions could also prevent psychological distress. In addition, by keeping busy in the manner described above, there may be some level of distraction from thinking about the actual loss, which could be associated with lower levels of psychological distress. That higher consequences predicted lower grief may be explained by a greater confrontation of restoration-oriented stressors, and avoidance of loss-oriented ones. In other words, there may have been increased focus on the consequences of the loss, rather than the loss itself, explaining the inverse relationship of consequences with grief and depression.

Another unexpected finding is that experiencing a high degree of control over the illness for men resulted in greater grief scores at T2. This is counter to the CSM and prior research which would both suggest that low levels of control should be related to greater psychological distress, while a greater sense of control over the condition should correspond to better outcomes. For instance,

Jopson and Moss-Morris (2003), found that higher personal control was indicative of lower depression scores on the HADS in a sample of 168 Multiple Sclerosis patients. Interestingly, they also found personal control was negatively associated with greater mental fatigue. The investigators suggested that trying to maintain control over an unpredictable illness was mentally taxing.

In the case of EPL, preliminary evidence has shown that partners feel that they need to act as the caregiver, the source of strength, and support for the woman (Black, 1991; Hutti, 1992; Miron 175

& Chapman, 1994), while simultaneously needing to either confront or avoid their own thoughts and feelings about the loss (Murphy, 1998). In prior research, men indicated that they wanted to help their partner but were concerned that their actions might worsen the situation (Murphy, 1998). This implies that men might feel a high degree of control and that they have the ability to not only improve the situation, but fear that they could make their partner more upset. Similarly, Miron and

Chapman (1994) reported that men in their sample felt the need to help their partner but did not know how. Feeling a high degree of control over something which, objectively, they have little control over, like the well-being of their partner, the loss in general, or the hospital experience, and not knowing what coping mechanisms to use to achieve this, may lead to feelings of personal responsibility and negative emotions.

Interestingly, this result was only observed at T2. It is possible that men with lower levels of control were lost to attrition. Alternatively, perhaps as time went on, those with a greater sense of control became more affected by grief. Maybe they expected that they should have a handle on their feelings by three months post-loss, but did not, corresponding with increased grief reactions.

Existing perinatal grief research has shown that men tend to be restricted in their expression of grief

(Mander, 1994; Murphy, 1998). Perhaps the control dimension of the IPQ-R corresponds with a high sense of control over the loss process generally. This need to control one’s reactions might prevent the expression and resolution of grief (Mander, 1994). It could be that with the passage of time, men who felt in control of the loss were trying to adopt coping mechanisms, like maladaptive ruminating or negative appraisal of their situation. This could also be true if the couple was trying to conceive again, but to no avail, as almost 53% were trying to conceive again but only 29.4% had done so.

At T2, low consequences also predicted higher grief scores for men. Taken together with the control results, these findings suggest that men with increased grief have a high sense of control, but less awareness of consequences leaving them with no outlet to gain a sense of mastery, complete tasks that may be helpful to the household, or keep busy and not think about the loss. This could then explain a relationship to high grief levels. 176

It should be mentioned that only a handful of studies have used the IPQ-R to assess the thoughts of an individual in relation to the illness of another person (Barrowclough, Lobban, Hatton,

& Quinn, 2001; Figueiras & Alves, 2007; Heijmans, De Ridder, & Bensing, 1999; Whitney, Haigh,

Weinman, & Treasure, 2007). Therefore, it is difficult to draw parallel between the current partner results and prior research.

A few general comments about the findings should be made. This study replicated prior findings that illness representations are susceptible to change over time. For instance, a study examining illness representations of 114 patients with traumatic injury observed that most dimensions of the Chinese IPQ-R (Trauma) significantly worsened with time (B. O. Lee, Chaboyer, &

Wallis, 2010). Particularly regarding grief, these findings are important as this could represent oscillation between loss- and restoration-oriented stressors proposed by the DPM.

Perceived consequences of EPL and their relationship with psychological distress have not been studied. Therefore, the explanations provided are only suggestive require future studies to examine these relationships in depth. Overall, the unexpected results highlight the complex nature of EPL, grief and coping, including the cognitive and emotional processes that guide behaviour.

10.3 Strengths and contributions of this study

The inclusion of partners in this research is a considerable strength of this study. Partners are often overlooked in the literature, and compared with women, their experience with EPL is far less understood. The results of this study show that partners are not immune to psychological distress after EPL. Furthermore, this study was the first to evaluate a wide range of thoughts that partners may have after EPL, in a systematic way, and provides some insights into how they process the loss.

Notably, this study was informed by well-established theoretical frameworks to consider both illness perceptions and the study of grief. The CSM provided a clear way to conceptualize EPL, measure symptoms, and understand the links between thoughts and outcomes, qualities that are often lacking from psychological distress after perinatal loss research. The principles of CBT, 177

particularly the notion that thoughts give rise to emotions, have also been instrumental in formulating this research. Importantly, this thesis has also considered numerous types of grief theories in which to contextualize its results.

A significant strength of the study was the use of well-defined terminology. It employed a clear definition of EPL, with a narrow gestational age range. This ensured the study of a more homogeneous sample and addressed a major criticism of prior research (Wright, 2011) which in general, has used the term “perinatal loss” to describe a range of losses. As it is unclear whether losses at different stages are similar in terms of psychological distress, this was an important strength of the present study. The use of a concise definition of grief, which has been inconsistently and vaguely defined in prior research also added precision to this study (Brier, 2008).

Importantly, the current study used a more rigorous methodology than many studies in the perinatal loss literature. It prospectively studied grief, depression, anxiety and cognitions over time.

Many studies in this field have used retrospective and cross-sectional designs, so the knowledge gained from this study increases our longitudinal understanding of the EPL experience. The use of well-validated, reliable measures, like the PGS, CES-D, STAI, and IPQ-R cannot be overlooked.

Additionally, the method of giving the questionnaires to participants online prevented them from skipping questions and meant that there was little missing data from the sample. The method of self-report measures that could be completed at participants’ leisure was likely beneficial given the sensitive nature of the research.

This study has been important in building the foundation of knowledge regarding prevalence of psychological distress after EPL. Few studies have assessed prevalence and course of psychological distress after EPL. There have been no studies that measured male prevalence rates for grief, and studies that have calculated rates for male depression and anxiety are scarce. This is the first study to report depression and anxiety prevalence among males in EPL, specifically. Other studies used increased gestational age ranges, or do not include information about the obstetric characteristics of their sample. Since there is some preliminary evidence that psychological distress subsides by six 178

months post-loss, the measurement points used in this study are useful in understanding the pattern of psychological distress in men and women soon after this loss. Moreover, many prior studies reporting information about course of disorders have done so incidentally, rather than using significance testing to measure differences in symptom severity between time points.

One of the key contributions of this study is the systematic exploration of cognitions in relation to EPL. Few studies have researched cognitions after EPL, and these tend to be fraught with methodological concerns, often only measuring causal factors and doing so using exploratory methods with little scientific rigor. The present study was novel in its use of a well-established theoretical model, the CSM, to conceptualise how thoughts might contribute to psychological distress after EPL. Furthermore, it is the first study to employ the widely used IPQ-R to measure cognitions post-EPL. Not only was this tool advantageous in terms of its psychometric properties, but also for its ability to measure a broad range of possible thoughts an individual may have. The knowledge gained from using this approach gives a useful foundation for studying and conceptualising how cognitions may influence feelings post-EPL. The current study was the first to investigate how illness perceptions predict grief with the well-validated IPQ-R. Only one prior study examining the link between illness perceptions and grief using the PIS could be found in the literature (Gökler-Danışman, Yalçınay-İnan, & Yiğit, 2017). This was also one of a small number of studies that have assessed illness perceptions in a group other than the person experiencing the physical symptoms.

Finally, few studies in this area take enduring characteristics into account. The fact that this study measured trait anxiety and used it as a control variable provides a richer picture of how illness perceptions influence psychological distress. Other studies in this area that use control variables often use the risk factors identified in Chapter 5. The current study is unique in its use of trait anxiety, a stable aspect of personality, as a control variable.

10.4 Limitations 179

Although this study addressed many of the methodological issues emerging from prior research, there are several limitations that arose in this study. Recruitment and retention of male participants was difficult. There was also a moderate degree of attrition among the female sample.

Given the sensitive nature of this research, it is not surprising that recruitment and attrition were obstacles in this study. The difficulty in recruiting and retaining male participants is a consistent issue in research, and is not an unexpected finding in this study (Markanday, Brennan, Gould, & Pasco,

2013). In fact, this phenomenon in perinatal loss research has been described as “unavoidable” in a recent review by Farren et al. (2018). Considering that during EPL the woman, or mother-to-be is the patient at the hospital, the partner may have been placed in a position where it was difficult for them to participate. Specifically, it seems unlikely that men would participate when their female partner did not. Indeed, in this study, men only participated when the female partner did too.

Furthermore, since men reportedly feel the burden to care for their partner, deal with the loss of the baby, and manage their own emotions, it is unsurprising that they might not want to take on extra tasks like study participation. Additionally, it is noteworthy that at T2, none of the men were using support resources. It is unclear whether this means that they were feeling less psychological distress by that point, or whether the ones who were coping less well were lost to follow up.

In this study, nurses were relied upon to facilitate the recruitment process. Due to ethical restrictions and the sensitivity required in discussing recruitment at the time of diagnosis of EPL, the researcher could not directly recruit participants. This left some of the judgement regarding recruitment in the hands of the nurses. Anecdotally, nurses reported deciding whether a particular patient would be receptive to recruitment and whether the nurse thought that it was appropriate to discuss recruitment in certain instances, for example, when patients were in extreme states of distress. This may have an impact on the sample characteristics, resulting in a sample with less intense grief than would otherwise have been recruited. Although at times nurses refrained from discussing this study with patients, all participants were given the flier about study participation, among other reading materials given to patients after EPL diagnosis from the hospital and had the 180

option of contacting the researcher. Given that only a small number of participants contacted the researcher, it is clear that patient participation was more likely to occur when nurses directly recruited participants.

Due to the relatively small number of participants in the study, certain analyses were not possible. For example, analysis of the causal factors subscale in the IPQ-R, that includes items like stress, diet, and personality, was not feasible. Although the main intention of this study was to explore cognitions surrounding the EPL experience, and not merely on potential causes of the loss as this has been researched previously, it would have been useful to examine these causes by a well- validated measure like the IPQ-R. Emotional representations were excluded to reduce the number of variables being examined. Furthermore, due to the sample size it was not possible to control for all variables identified as known or possible risk factors, or to control for T1 psychological distress at T2.

An important point not often considered in perinatal loss literature is not only the loss for the baby, but for the pregnancy itself (Klier et al., 2002; Nikčević, Snijders, et al., 1999). The PGS, used in this study, does not account for possible feelings of grief and loss related to the pregnancy itself. Pregnancy may involve a range of experiences, such as watching one’s or one’s partner’s body change, going to doctor’s appointments, having a baby shower and experiencing childbirth.

Pregnancy can be viewed as a rite of passage and being denied this experience may contribute to feelings of loss. Therefore, this study is limited by tapping solely into grief related to the loss of the baby, while overlooking this other possible source of distress.

The present study assessed symptoms, rather than diagnosing disorders. Although one could argue that this is a limitation, experiencing symptoms of grief, depression and anxiety, can still be distressing and cause disability. Therefore, there is clinical utility in identifying those who may be negatively impacted by these symptoms. Furthermore, the measures used were well validated tools, widely used for symptom measurement such as in this study.

Wijngaards‐de Meij et al. (2008) 181

Finally, participants who scored above the clinical threshold on the PGS or who endorsed the item related to suicide were contacted by the researcher to discuss their scores and were offered referral options. Although none of the participants felt the need for referrals for treatment, talking to the researcher about their psychological distress may have had an intervention effect, lowering symptom scores at T2, a finding previously reported by Neugebauer et al. (1992b). Although this may have affected the results of some participants, it is an unavoidable part of ethical research.

10.5 Clinical Implications

The results of the present study indicate that psychological distress is highest in the short time after EPL. Importantly, both women and men experienced increased psychological distress at this time. Considering men are often neglected in perinatal research, are frequently reported as being overlooked within the hospital experience, and that preliminary evidence suggests that they are placed in a complex situation of caring for their partner and ignoring their own emotions, this is a significant finding. Furthermore, EPL is not often discussed publicly, meaning that there may be less social support for individuals experiencing EPL compared with other losses. Therefore, at the time of diagnosis, efforts should be made to ensure that both men and women are provided psychological care, but also are informed of the possibility that they may go on to experience psychological distress in the coming months. Providing this information would be useful in normalising the experience and may facilitate the pursuit of treatment, if required.

Not only are the two weeks following EPL a key time to screen individuals, but this study showed that three months on, some women and men were still experiencing high levels of distress.

Left unchecked, there is a risk of developing depressive and anxiety disorders as well as prolonged grief disorder, or other pathological forms of grief. Follow-up contact with women and men during the first three months after EPL and screening them for psychological distress would be beneficial for this population. This would be particularly relevant for men who often do not disclose negative feelings about the loss readily (Goldbach et al., 1991; Stinson et al., 1992). 182

It is noteworthy that the effect of EPL is inherently a family issue, and as such, consideration of the family in general is important. Few studies have surveyed the effects of perinatal loss on the wider family such as grandparents and siblings (Leon, 1986; Roose & Blanford, 2011). A small proportion of the perinatal loss research examines the effect of prior EPL on psychological distress in parents in subsequent pregnancies. Since pregnancy is acknowledged to have accompanying psychological difficulties in otherwise healthy individuals, it is unsurprising that many people experience increased distress in the next pregnancy. This issue is especially relevant given the large proportion of individuals in the current study attempting to get pregnant again. The implications for living with unresolved distress can impact on bonds with others, and importantly, on other children, and on children from subsequent pregnancies.

Consideration of which treatment method would be most efficacious among this population is critical. In light of the results from the present study that illness representations contribute to psychological distress, one avenue for treatment would be to address cognitions among bereaved individuals. Interventions such as Cognitive Behavioural Therapy (CBT) have been suggested for use among those experiencing a loss. For example, CBT can be useful in addressing consequences of traumatic loss. For example, common behavioural techniques to reduce traumatic arousal include progressive muscle relaxation and breathing exercises. When a loss shatters core beliefs, meaning reconstruction can aid in modifying schemas and core beliefs into one’s assumptive world views

(Fleming & Robinson, 2001). Research examining the efficacy of CBT for treatment of grief after loss has produced encouraging results. Using a minimization method, Boelen, de Keijser, van den Hout, and van den Bout (2007) assessed the treatment effectiveness in 54 individuals with complicated grief. Participants were allocated to one of three treatment conditions. The first comprised six sessions of cognitive restructuring, and six sessions of exposure therapy. The second condition reversed the order of the first condition, and the third contained 12 sessions of supportive counselling. The results indicated that cognitive interventions, regardless of order, were superior to supportive counselling in reducing complicated grief symptoms measured by the ICG (Prigerson, 183

Maciejewski, et al., 1995) and overall psychopathology on the SCL-90 (Arrindell & Ettema, 2003).

Others have reported similar results in children and adolescents with PGD, in older bereaved adults using mindfulness-based CBT, and in bereaved adults engaging in internet-based CBT (O’Connor,

Piet, & Hougaard, 2014; Spuij, Dekovic, & Boelen, 2015; Wagner, Knaevelsrud, & Maercker, 2006).

Although the current study was not intended not directly test the DPM, the results are consistent with DPM principles. Therefore, it may be that interventions using core concepts of the

DPM may be useful in addressing cognitions and other aspects of grief. This may be done by changing the pattern of confronting and avoiding loss- and restoration-oriented stressors, for instance (M. Stroebe & Schut, 2010). One intervention has used Interpersonal Therapy and CBT- based techniques in individuals with complicated grief, however this is an emerging area of study requiring further investigation (Shear, Frank, Houck, & Reynolds, 2005).

10.6 Future Directions

There are numerous considerations for future research that emerge from this study. Grief, depression and anxiety after EPL require more study, generally, including delineating typical from atypical reactions, gaining further insights into the prevalence and course of these symptoms and disorders and better understanding the subjective experience of EPL. There is a paucity of research in this field and it is important from clinical and public health standpoints.

Greater attempts should be made to include the study of partner reactions to EPL. They are often disregarded in research. This is not completely surprising considering that the experiences of women with EPL are not well understood either. When partners are included, they are often not systematically studied. Though men are difficult to recruit for psychological research, it would be useful to consider ways in which to recruit them and lessen attrition rates. This could perhaps be achieved by the researcher having contact with the partners in person at the hospital. Furthermore, ensuring that the partner is made to feel like a patient of the hospital, as the woman experiencing the EPL is, may increase their participation in this type of research. There would also be value in 184

studying the reactions of people aside from heterosexual couples, with a variety of sexual orientations to determine their experience of EPL, as these are largely unknown.

Increased study into the cognitive contribution to psychological distress after EPL is required. The need for investigation into the cognitive aspects of perinatal loss has been echoed by other researchers and although this study lays some groundwork on which to build, increased research on the diverse range of thoughts women and partners may have would improve our understanding of how people experience EPL. Furthermore, considering the intriguing results that in some dimensions of the IPQ-R, it was actually “better” illness perceptions that predicted psychological distress, it would be useful to study illness perceptions after EPL in order to further elucidate the current findings. Further study into this area could yield results that support the position adopted here, that stronger illness coherence and consequences are related to increased confrontation and cognitive engagement with the loss, resulting in greater distress.

Although not an aim of the current study, comparison of illness perceptions within the couple is an intriguing area of future study as illness perceptions of a partner can profoundly impact the patient’s adjustment to EPL (Benyamini et al., 2009; Figueiras & Weinman, 2003; Heijmans et al.,

1999). For instance, a cross-sectional study compared illness perceptions using the IPQ in 72 couples at their first visit to a fertility clinic. Women who were the most distressed were those who thought they had low levels of controllability over infertility and were coupled with partners who perceived high controllability over infertility. Thus, for women, this study found that congruence between cognitions within the couple between were more beneficial, even when the perceptions are

“negative”, than incongruent thoughts. The authors speculated that this could relate to the use of differing coping styles within the couple and could lead to feelings of isolation and frustration for the women. Given that the current study found opposite relationships between control and psychological distress in women and men, this line of research provides exciting prospects for future study. 185

Similarly, differences within the couple in terms of grieving is an important consideration for future research. There is an assumption among people who experience intense life events together that they will have similar emotional responses to that event (Wing, Burge-Callaway, Rose Clance, &

Armistead, 2001) and research shows that bereaved couples believe that because they experience the same loss, they should feel the same levels of grief (Peppers & Knapp, 1980). In this study, there was a stark difference in grief prevalence rates between women and partners, which is in line with prior research (Wing et al., 2001). This incongruent grieving is likely to impact on post-loss adjustment.

Furthermore, differences in coping within the couple may impact post-loss adjustment. For example, comparison of coping styles used between parents was assessed by Wijngaards‐de Meij et al. (2008) in 219 couples over 20 months after the death of their child. A main finding in their study was that having a wife who engaged in restoration-oriented coping was related to positive adjustment in the husbands. The current study was intended to establish a basis of knowledge about cognitions, therefore, including positive affect was not possible here. Nevertheless, this is an important area for future research.

This study was the first to use the CSM in relation to perinatal loss. Therefore, it could be valuable to apply the CSM to observe illness representations among individuals experiencing other forms of perinatal loss. In addition, this study focussed on part of the CSM, namely assessing what cognitions individuals have after EPL. Although these results require replication, a logical next step would be to include coping and how it fits into the experience of EPL. In this vein, no studies have systematically examined the role of positive affect and positive reappraisal, and different forms of rumination, problem- and emotion-focussed coping in EPL. Considering some of the unusual findings in this study, it may be that positive emotion or reappraisal can help to account for these results.

It is important for future research to be guided by theoretical approaches. Currently, it is not well understood if the experience of EPL fits well into any established grief theory. Having a sound theoretical approach that explains how individuals and couples cope with EPL would be valuable to 186

inform future research and therapeutic techniques, and to identify those at risk for poor outcomes.

Although this study was grounded in sound theories, there is a question as to whether the CSM is applicable to the EPL experience. Furthermore, not all dimensions were significant. It is also unclear whether the CSM can be extrapolated to any experience or if it applies only to “illnesses”. If so, is

EPL considered an “illness”? Is the loss experienced equally for the baby and for the pregnancy?

There are many factors complicating how EPL is conceptualized. Clearly, more research is needed in this area.

10.7 Conclusion

This thesis reports a unique investigation of the prevalence and course of grief, depression and anxiety after EPL in women and men. Informed by theoretical concepts, this study used a well- defined definition of EPL, a sound methodology and well-validated tools to explore the prevalence and course of grief, depression and anxiety in women and men two weeks and three months post- loss. The results give unique insights into prevalence rates of grief, depression and anxiety after EPL, indicating increased levels two weeks post-loss, which decreased by three months after EPL. This study was the first to report prevalence of grief among men.

This current study is also the first to use the CSM to systematically examine cognitions in women and men experiencing EPL and the first to examine the relationship between grief in pregnancy loss and illness representations. Results indicated that illness perceptions are predictive of grief, depression and anxiety among women and men after EPL, but often in unexpected ways.

The mechanisms for these results are not completely clear and more research is needed both to replicate these findings and to delineate the reasons behind these observations.

EPL is a common type of perinatal loss. This is a unique type of loss in many ways. It is generally unexpected, can involve excessive guilt, presents distinct challenges for both women and their partners both inter- and intrapersonally, and is a loss that is predominantly experienced by relatively young adults. In order to understand why some develop psychological distress while others do not, a variety of factors must be considered. To paraphrase Madden (1994), assuming that all 187

individuals will be severely negatively affected by EPL is harmful, as it reduces pregnancy to a unidimensional experience that fails to reflect the richness of people’s lives. This includes the human capacity for resilience as is evidenced by the decrease in psychological distress among the sample over time. Prior research has pointed to many possible reasons to account for poor outcomes after

EPL, and the current research extends this by focusing on cognitions. This provides an important basis of knowledge that can be built on by further study in this area, to ensure that those affected by

EPL receive the best possible care at this difficult time.

188

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222

Appendix A: Questionnaire Materials

Psychological Outcomes of Early Pregnancy Loss Women - Time 1

ABOUT THIS QUESTIONNAIRE

This questionnaire asks you about how you think and feel about your pregnancy loss.

There are 4 sections in the questionnaire and it will take approximately 40 minutes to complete. Please try to complete the questionnaire in one sitting, answer all sections and all relevant questions. Please answer the questions as honestly as you can, remembering your responses are anonymous and strictly confidential. Please complete this questionnaire on your own and do not compare your answers with anyone else.

If you have any questions or concerns about the material in this questionnaire, you can contact PhD Candidate Jessie Bendavid or Principal Researcher Dr Christina Bryant on (03) 8345 3906.

We thank you for your time and contribution to this research

When you have finished, please return this questionnaire along with the signed informed consent form to the researchers using the reply-paid envelope provided, or sending to:

Attention Dr Christina Bryant, Royal Women’s Hospital, Reply Paid 65760, PARKVILLE VIC 3052.

Section 1 – This section is gathering information about you

We would like to gather some basic information about you. Please fill in the gaps and tick the option appropriate to you. All participants please answer this section.

1. ID number …………………… Today’s date…………………………. 2. What is your date of birth? ………./………../………. (dd/mm/yyyy) 223

3. What is the highest level of education that you have completed?  Up to Year 10 (Form 4)  Up to Year 12 (Form 6)  University undergraduate degree  University postgraduate degree  Trade certificate completed  TAFE certificate completed  Other. Please specify: …………………… 4. What is your current employment status?  Employed full-time  Full-time house duties  Employed part-time  Retired  Unemployed  Disability/sickness benefit 5. What is your current relationship status?  Married  Single/never married  Separated/divorced  Widowed  Other. Please specify: …………………… 6. What is your current living situation?  Living alone (or with unrelated others)  Lone parent (yourself and child(ren))  Living with spouse/partner (no children)  Living with parent(s)  Living with your spouse/partner and child(ren)  Other. Please specify: …………………… 7. Please indicate the number of children you have in the space provided Natural child(ren) ……. Adopted child(ren) ……. Step-child(ren) ……. Foster child(ren) ……. 8. What is your ethnicity/country of origin?  Aboriginal/Torres Strait Islander  Australian  New-Zealander  British  Italian  Greek  Vietnamese  Cambodian  Other. Please specify: …………………… 9. Have you ever been diagnosed with a mental health problem?  Yes  No (Go to section 2) 10. If so, which mental health problem have you been diagnosed with?  Depression  Anxiety  Substance abuse  Other. Please specify: …………………… 11. Are you currently experiencing symptoms of a mental health problem?  Yes  No (Go to section 2) 224

12. Which mental health problems are you currently experiencing?  Depression  Anxiety  Substance abuse  Other Please specify: ……………………

Section 2 – This section is gathering information about your reproductive history

All participants please answer this section. Please consider your entire reproductive history, including pregnancies/children you may have had with other partners.

1. Considering your current relationship and prior relationships, how many pregnancies have you had with these partners? Please include the pregnancy which ended with this pregnancy loss.  1  2  3  4  5  More than 5. Please specify how many: ………….. 2. Including this pregnancy loss, please indicate the number of each type of pregnancy loss that you have had in the space provided. Please include all pregnancy losses occurring in your current relationship and your prior relationships. Molar pregnancy ………. Ectopic pregnancy ………. Early miscarriage (under 20 weeks gestation) ………. Late miscarriage or stillbirth (at or over 20 weeks gestation) ………. 3. Have you ever had a child or children die after birth?  Yes  No Please specify how many: …………. Please indicate the age(s) at which they died: …………..

Section 3 – The following questions pertain to your recent pregnancy loss, which was diagnosed at the Royal Women’s Hospital

All participants please answer this section.

1. How long were you pregnant for when you were diagnosed with this pregnancy loss? (weeks, days) ………………… 2. How was this pregnancy conceived?  Spontaneously, without the use of reproductive technology  Ovulation induction  Intrauterine insemination  Intrauterine insemination with donor sperm  In vitro fertilisation  I don’t know  Other. Please specify…………. 225

3. Was this an intended pregnancy?  Yes  No 4. How long did it take to conceive this pregnancy?  Under 3 months  3-6 months  6-9 months  9-12 months  Over 12 months. Please specify how many: ………….. 5. How difficult was it to conceive this pregnancy?  Very difficult  Difficult  Somewhat difficult  Neutral  Somewhat easy  Easy  Very easy 6. Was this pregnancy:  Implanted inside the uterus  Ectopic (tubal) pregnancy  Molar pregnancy (the baby does not develop and only the placenta forms)  I don’t know 7. Did you see the foetus on ultrasound?  Yes  No 8. What kind of management or treatment did you have for the pregnancy loss?  No treatment (expectant management)  Treatment with medication to hasten the passing of the pregnancy tissue  Surgical treatment (dilation and curettage) 9. Are you participating in any support resources in response to the pregnancy loss (for example, support groups, internet chat rooms, message board postings, etc.)?  Yes. Please specify ……………..  No

Section 4 – This section is about how you think, feel and behave

4.1 All participants please answer this section. Below is a list of ways you might have felt or behaved. Please select the response that best reflects how each statement applies to you. The items refer to how often you felt or behaved during the past week.

During the past week… Rarely or Some or a Occasionally or a Most or none of the little of the moderate amount all of the time (less time (1-2 of time (3-4 days) time (5-7 than 1 day) days) days)

1. I was bothered by 0 1 2 3 things that usually don’t bother me 2. I did not feel like 0 1 2 3 eating; my appetite was poor 226

During the past week… Rarely or Some or a Occasionally or a Most or none of the little of the moderate amount all of the time (less time (1-2 of time (3-4 days) time (5-7 than 1 day) days) days)

3. I felt that I could not 0 1 2 3 shake off the blues even with help from my family or friends 4. I felt that I was just as 0 1 2 3 good as other people 5. I had trouble keeping 0 1 2 3 my mind on what I was doing 6. I felt depressed 0 1 2 3 7. I felt that everything I 0 1 2 3 did was an effort 8. I felt hopeful about 0 1 2 3 the future 9. I thought my life had 0 1 2 3 been a failure 10. I felt fearful 0 1 2 3 11. My sleep was restless 0 1 2 3 12. I was happy 0 1 2 3 13. I talked less than 0 1 2 3 usual 14. I felt lonely 0 1 2 3 15. People were 0 1 2 3 unfriendly 16. I enjoyed life 0 1 2 3 17. I had crying spells 0 1 2 3 18. I felt sad 0 1 2 3 19. I felt that people 0 1 2 3 dislike me 20. I could not get “going” 0 1 2 3

4.2 All participants please answer this section. A number of statements which people have used to describe themselves are given below. Read each statement and choose the appropriate number to the right of the statement to indicate how you feel right now, that is at this moment. There are no right or wrong answers. Do not spend too much time on any one statement but give the answer which seems to describe your present feelings best.

At this moment… Not at all Somewhat Moderately Very much 1. I feel calm 1 2 3 4 2. I feel secure 1 2 3 4

4.3 All participants please answer this section. A number of statements which people have used to describe themselves are given below. Read each statement and then choose the appropriate number to the right of the statement to indicate how you generally feel.

Generally… Not at all Somewhat Moderately Very much

227

1. I feel pleasant 1 2 3 4 2. I feel nervous and restless 1 2 3 4 3. I feel satisfied with myself 1 2 3 4

4.4 All participants please answer this section. Each of the items below is a statement of thoughts and feelings that some people have concerning a loss such as yours. There are no right or wrong responses to these statements. For each item, tick the box which best indicates the extent to which you agree or disagree with it at the present time. If you are not certain, use the “neither” category. Please try to use this category only when you truly have no opinion.

At the present time… Strongly Agree Neither Disagree Strongly agree disagree disagree nor agree 1. I feel depressed 1 2 3 4 5 2. I find it hard to get along 1 2 3 4 5 with certain people 3. I feel empty inside 1 2 3 4 5 4. I can’t keep up with my 1 2 3 4 5 normal activities 5. I feel a need to talk about 1 2 3 4 5 the baby 6. I am grieving for the baby 1 2 3 4 5 7. I am frightened 1 2 3 4 5 8. I have considered suicide 1 2 3 4 5 since the loss 9. I take medicine for my 1 2 3 4 5 nerves 10. I very much miss the baby 1 2 3 4 5 11. I feel I have adjusted well 1 2 3 4 5 to the loss 12. It is painful to recall 1 2 3 4 5 memories of the loss 13. I get upset when I think 1 2 3 4 5 about the baby 14. I cry when I think about 1 2 3 4 5 him/her 15. I feel guilty when I think 1 2 3 4 5 about the baby 16. I feel physically ill when I 1 2 3 4 5 think about the baby 17. I feel unprotected in a 1 2 3 4 5 dangerous world since he/she died 18. I try to laugh, but nothing 1 2 3 4 5 seems funny anymore 19. Time passes so slowly 1 2 3 4 5 since the baby died 20. The best part of me died 1 2 3 4 5 with the baby 21. I have let people down 1 2 3 4 5 since the baby died 228

At the present time… Strongly Agree Neither Disagree Strongly agree disagree disagree nor agree 22. I feel worthless since 1 2 3 4 5 he/she died 23. I blame myself for the 1 2 3 4 5 baby’s death 24. I get cross at my friends 1 2 3 4 5 and relatives more than I should 25. Sometimes I feel like I 1 2 3 4 5 need a professional counsellor to help me get my life back together again 26. I feel as though I’m just 1 2 3 4 5 existing and not really living since he/she died 27. I feel so lonely since 1 2 3 4 5 he/she died 28. I feel somewhat apart and 1 2 3 4 5 remote, even among friends 29. It’s safer not to love 1 2 3 4 5 30. I find it difficult to make 1 2 3 4 5 decisions since the baby died 31. I worry about what my 1 2 3 4 5 future will be like 32. Being a bereaved parent 1 2 3 4 5 means being a “Second- Class Citizen” 33. It feels great to be alive 1 2 3 4 5

4.5 All participants please answer this section. Listed below are a number of symptoms that you may or may not have experienced since the pregnancy loss. Please indicate by circling 1 for Yes or 0 for No, whether you believe that you have experienced any of these symptoms since the pregnancy loss and whether you believe that these symptoms are related to the pregnancy loss.

I have experienced this This symptom is related to symptom since the the pregnancy loss pregnancy loss Yes No Yes No 1. Vaginal bleeding 1 0 1 0 2. Pain 1 0 1 0 3. Cramps 1 0 1 0 4. Fatigue 1 0 1 0 5. Loss of strength 1 0 1 0 6. Fever 1 0 1 0 7. Weakness 1 0 1 0

4.6 All participants please answer this section. We are interested in your own personal views of how you now see your pregnancy loss. Please indicate how much you agree or disagree with the following statements about your pregnancy loss. 229

5. The pregnancy loss has 1 2 3 4 5 serious financial consequences 6. The pregnancy loss 1 2 3 4 5 causes difficulties for those who are close to me 7. There is a lot which I can 1 2 3 4 5 do to control my symptoms 8. What I do can determine 1 2 3 4 5 whether my symptoms get better or worse 9. The course of my 1 2 3 4 5 symptoms depends on me 10. Nothing I do will affect my 1 2 3 4 5 symptoms 11. I have the power to 1 2 3 4 5 influence my symptoms 12. My actions will have no 1 2 3 4 5 effect on the outcome of my symptoms 13. The symptoms of my 1 2 3 4 5 condition are puzzling to me 14. The pregnancy loss is a 1 2 3 4 5 mystery to me 15. I don’t understand the 1 2 3 4 5 pregnancy loss 16. The pregnancy loss 1 2 3 4 5 doesn’t make any sense to me 17. I have a clear picture or 1 2 3 4 5 understanding of the pregnancy loss 230

VIEWS ABOUT YOUR Strongly Agree Neither Disagree Strongly PREGNANCY LOSS agree agree nor disagree disagree 18. I get depressed when I 1 2 3 4 5 think about the pregnancy loss 19. When I think about the 1 2 3 4 5 pregnancy loss I get upset 20. The pregnancy loss 1 2 3 4 5 makes me feel angry 21. The pregnancy loss does 1 2 3 4 5 not worry me 22. Having this pregnancy 1 2 3 4 5 loss makes me feel anxious 23. The pregnancy loss 1 2 3 4 5 makes me feel afraid

4.7 All participants please answer this section. Usually no treatable cause is found for a pregnancy loss. Research tells us that about half of all pregnancy losses happen because the chromosomes in the embryo are abnormal and the pregnancy doesn’t develop properly from the start. In this case, pregnancy loss is nature’s way of dealing with an abnormal embryo. Nothing can be done to prevent pregnancy loss from occurring if a pregnancy is developing abnormally. We are interested in what you consider may have been the cause of your pregnancy loss. As people are very different there is no correct answer for this question. We are most interested in your own views about the factors that caused your pregnancy loss rather than what others, including doctors or family may have suggested to you. Below is a list that some people might think cause a pregnancy loss. Please indicate how much you agree or disagree that they were causes for you by circling the appropriate number.

POSSIBLE CAUSES Strongly Agree Neither Disagree Strongly agree agree nor disagree disagree 13. Smoking 1 2 3 4 5 14. Accident or injury 1 2 3 4 5 15. My personality 1 2 3 4 5 16. Altered immunity 1 2 3 4 5 17. My partner’s behaviour 1 2 3 4 5 18. My partner’s personality 1 2 3 4 5 19. Exercising 1 2 3 4 5 20. God’s will 1 2 3 4 5 21. Fate 1 2 3 4 5 22. Problem with the baby 1 2 3 4 5 23. A germ or virus 1 2 3 4 5 24. Problem with 1 2 3 4 5 implantation

4.8 All participants please list in rank-order the three most important factors that you now believe caused your pregnancy loss. You may use any of the items from the box above, or you may have additional ideas of your own.

1. The most important cause for me is: 2. The second most important cause for me is: 3. The third most important cause for me is:

Is there anything else about your experience of pregnancy loss that you would like to tell us?

Instructions on returning this questionnaire Please return the questionnaire along with the signed informed consent form in the reply-paid envelope, or post to: Attention Dr Christina Bryant, Royal Women’s Hospital, Reply Paid 65760, PARKVILLE VIC 3052.

Thank you for taking the time to complete this questionnaire. Your participation to this research is valuable to us and will assist us to better understand the experience of pregnancy loss. 232

Psychological Outcomes of Early Pregnancy Loss Partners - Time 1

ABOUT THIS QUESTIONNAIRE

This questionnaire asks you about how you think and feel about your pregnancy loss.

If you have any questions or concerns about the material in this questionnaire, you can contact PhD Candidate Jessie Bendavid or Principal Researcher Dr Christina Bryant on (03) 8345 3906.

We thank you for your time and contribution to this research

When you have finished, please return this questionnaire along with the signed informed consent form to the researchers using the reply-paid envelope provided, or sending to:

Attention Dr Christina Bryant, Royal Women’s Hospital, Reply Paid 65760, PARKVILLE VIC 3052.

Section 1 – This section is gathering information about you

We would like to gather some basic information about you. Please fill in the gaps and tick the option appropriate to you. All participants please answer this section.

1. ID number …………………… Today’s date…………………………. 2. What is your date of birth? ………./………../………. (dd/mm/yyyy) 233

12. Which mental health problems are you currently experiencing?  Depression  Anxiety  Substance abuse  Other Please specify: ……………………

Section 2 – This section is gathering information about your reproductive history

All participants please answer this section. Please consider your entire reproductive history, including pregnancies/children you may have had with other partners.

1. Considering your current relationship and prior relationships, how many pregnancies have you had with these partners? Please include the pregnancy which ended with this pregnancy loss.  1  2  3  4  5  More than 5. Please specify how many: ………….. 2. Including this pregnancy loss, please indicate the number of each type of pregnancy loss that you have had in the space provided. Please include all pregnancy losses occurring in your current relationship and your prior relationships. Molar pregnancy ………. Ectopic pregnancy ………. Early miscarriage (under 20 weeks gestation) ………. Late miscarriage or stillbirth (at or over 20 weeks gestation) ………. 3. Have you ever had a child or children die after birth?  Yes  No Please specify how many:………. Please indicate the age(s) at which they died: …………..

Section 3 – The following questions pertain to your recent pregnancy loss, which was diagnosed at the Royal Women’s Hospital

All participants please answer this section.

1. How long was your partner pregnant for when diagnosed with this pregnancy loss? (weeks, days) ……………… 2. How was this pregnancy conceived?  Spontaneously, without the use of reproductive technology  Ovulation induction  Intrauterine insemination  Intrauterine insemination with donor sperm  In vitro fertilisation  I don’t know  Other. Please specify…………. 235

3. Was this an intended pregnancy?  Yes  No 4. How long did it take to conceive this pregnancy?  Under 3 months  3-6 months  6-9 months  9-12 months  Over 12 months. Please specify how many: ………….. 5. How difficult was it to conceive this pregnancy?  Very difficult  Difficult  Somewhat difficult  Neutral  Somewhat easy  Easy  Very easy 6. Was this pregnancy:  Implanted inside the uterus  Ectopic (tubal) pregnancy  Molar pregnancy (the baby does not develop and only the placenta forms)  I don’t know 7. Did you see the foetus on ultrasound?  Yes  No 8. What kind of management or treatment did your partner have for the pregnancy loss?  No treatment (expectant management)  Treatment with medication to hasten the passing of the pregnancy tissue  Surgical treatment (dilation and curettage) 9. Are you participating in any support resources in response to the pregnancy loss (for example, support groups, internet chat rooms, message board postings, etc.)?  Yes. Please specify ……………..  No

Section 4 – This section is about how you think, feel and behave

During the past week… Rarely or Some or a Occasionally or a Most or none of the little of the moderate amount all of the time (less time (1-2 of time (3-4 days) time (5-7 than 1 day) days) days)

1. I was bothered by 0 1 2 3 things that usually don’t bother me 2. I did not feel like 0 1 2 3 eating; my appetite was poor 236

During the past week… Rarely or Some or a Occasionally or a Most or none of the little of the moderate amount all of the time (less time (1-2 of time (3-4 days) time (5-7 than 1 day) days) days)

At this moment… Not at all Somewhat Moderately Very much 1. I feel calm 1 2 3 4 2. I feel secure 1 2 3 4

237

Generally… Not at all Somewhat Moderately Very much

1. I feel pleasant 1 2 3 4 2. I feel nervous and restless 1 2 3 4 3. I feel satisfied with myself 1 2 3 4

At the present time… Strongly Agree Neither Disagree Strongly agree disagree disagree nor agree

1. I feel depressed 1 2 3 4 5 2. I find it hard to get along 1 2 3 4 5 with certain people 3. I feel empty inside 1 2 3 4 5 4. I can’t keep up with my 1 2 3 4 5 normal activities 5. I feel a need to talk about 1 2 3 4 5 the baby 6. I am grieving for the baby 1 2 3 4 5 7. I am frightened 1 2 3 4 5 8. I have considered suicide 1 2 3 4 5 since the loss 9. I take medicine for my 1 2 3 4 5 nerves 10. I very much miss the baby 1 2 3 4 5 11. I feel I have adjusted well 1 2 3 4 5 to the loss 12. It is painful to recall 1 2 3 4 5 memories of the loss 13. I get upset when I think 1 2 3 4 5 about the baby 14. I cry when I think about 1 2 3 4 5 him/her 15. I feel guilty when I think 1 2 3 4 5 about the baby 16. I feel physically ill when I 1 2 3 4 5 think about the baby 17. I feel unprotected in a 1 2 3 4 5 dangerous world since he/she died 18. I try to laugh, but nothing 1 2 3 4 5 seems funny anymore 19. Time passes so slowly 1 2 3 4 5 since the baby died 20. The best part of me died 1 2 3 4 5 with the baby 238

At the present time… Strongly Agree Neither Disagree Strongly agree disagree disagree nor agree

21. I have let people down 1 2 3 4 5 since the baby died 22. I feel worthless since 1 2 3 4 5 he/she died 23. I blame myself for the 1 2 3 4 5 baby’s death 24. I get cross at my friends 1 2 3 4 5 and relatives more than I should 25. Sometimes I feel like I 1 2 3 4 5 need a professional counsellor to help me get my life back together again 26. I feel as though I’m just 1 2 3 4 5 existing and not really living since he/she died 27. I feel so lonely since 1 2 3 4 5 he/she died 28. I feel somewhat apart and 1 2 3 4 5 remote, even among friends 29. It’s safer not to love 1 2 3 4 5 30. I find it difficult to make 1 2 3 4 5 decisions since the baby died 31. I worry about what my 1 2 3 4 5 future will be like 32. Being a bereaved parent 1 2 3 4 5 means being a “Second- Class Citizen” 33. It feels great to be alive 1 2 3 4 5

4.5. All participants please answer this section. We are interested in your own personal views of how you now see your pregnancy loss. Please indicate how much you agree or disagree with the following statements about your pregnancy loss.

VIEWS ABOUT YOUR Strongly Agree Neither Disagree Strongly PREGNANCY LOSS agree agree nor disagree disagree 5. The pregnancy loss has 1 2 3 4 5 serious financial consequences 6. The pregnancy loss 1 2 3 4 5 causes difficulties for those who are close to me 7. There is a lot which I can 1 2 3 4 5 do to control my symptoms 8. What I do can determine 1 2 3 4 5 whether my symptoms get better or worse 9. The course of my 1 2 3 4 5 symptoms depends on me 10. Nothing I do will affect my 1 2 3 4 5 symptoms 11. I have the power to 1 2 3 4 5 influence my symptoms 12. My actions will have no 1 2 3 4 5 effect on the outcome of my symptoms 13. The symptoms of my 1 2 3 4 5 condition are puzzling to me 14. The pregnancy loss is a 1 2 3 4 5 mystery to me 15. I don’t understand the 1 2 3 4 5 pregnancy loss 16. The pregnancy loss 1 2 3 4 5 doesn’t make any sense to me 17. I have a clear picture or 1 2 3 4 5 understanding of the pregnancy loss 18. I get depressed when I 1 2 3 4 5 think about the pregnancy loss 19. When I think about the 1 2 3 4 5 pregnancy loss I get upset 20. The pregnancy loss 1 2 3 4 5 makes me feel angry 21. The pregnancy loss does 1 2 3 4 5 not worry me 22. Having this pregnancy 1 2 3 4 5 loss makes me feel anxious 240

VIEWS ABOUT YOUR Strongly Agree Neither Disagree Strongly PREGNANCY LOSS agree agree nor disagree disagree 23. The pregnancy loss 1 2 3 4 5 makes me feel afraid

4.6 All participants please answer this section. Usually no treatable cause is found for a pregnancy loss. Research tells us that about half of all pregnancy losses happen because the chromosomes in the embryo are abnormal and the pregnancy doesn’t develop properly from the start. In this case, pregnancy loss is nature’s way of dealing with an abnormal embryo. Nothing can be done to prevent pregnancy loss from occurring if a pregnancy is developing abnormally. We are interested in what you consider may have been the cause of your pregnancy loss. As people are very different there is no correct answer for this question. We are most interested in your own views about the factors that caused your pregnancy loss rather than what others, including doctors or family may have suggested to you. Below is a list that some people might think cause a pregnancy loss. Please indicate how much you agree or disagree that they were causes for you by circling the appropriate number.

POSSIBLE CAUSES Strongly Agree Neither Disagree Strongly agree agree nor disagree disagree 1. Stress or worry 1 2 3 4 5 2. Heredity – it runs in my 1 2 3 4 5 family 3. Diet or eating habits 1 2 3 4 5 4. Chance or bad luck 1 2 3 4 5 5. Poor medical care in my 1 2 3 4 5 past 6. Pollution in the 1 2 3 4 5 environment 7. My own behaviour 1 2 3 4 5 8. My mental attitude e.g. 1 2 3 4 5 thinking about life negatively 9. Family problems or 1 2 3 4 5 worries 10. Overwork 1 2 3 4 5 11. My emotional state e.g. 1 2 3 4 5 feeling down, lonely, anxious, empty 12. Ageing 1 2 3 4 5 13. Smoking 1 2 3 4 5 14. Accident or injury 1 2 3 4 5 15. My personality 1 2 3 4 5 16. Altered immunity 1 2 3 4 5 17. My partner’s behaviour 1 2 3 4 5 18. My partner’s personality 1 2 3 4 5 19. Exercising 1 2 3 4 5 20. God’s will 1 2 3 4 5 21. Fate 1 2 3 4 5 22. Problem with the baby 1 2 3 4 5 23. A germ or virus 1 2 3 4 5 241

POSSIBLE CAUSES Strongly Agree Neither Disagree Strongly agree agree nor disagree disagree 24. Problem with 1 2 3 4 5 implantation

4.7 All participants please list in rank-order the three most important factors that you now believe caused your pregnancy loss. You may use any of the items from the box above, or you may have additional ideas of your own.

1. The most important cause for me is: 2. The second most important cause for me is: 3. The third most important cause for me is:

Is there anything else about your experience of pregnancy loss that you would like to tell us?

Thank you for taking the time to complete this questionnaire. Your participation to this research is valuable to us and will assist us to better understand the experience of pregnancy loss. 242

Psychological Outcomes of Early Pregnancy Loss Women - Time 2

ABOUT THIS QUESTIONNAIRE

This questionnaire asks you about how you think and feel about your pregnancy loss.

There are 3 sections in the questionnaire and it will take approximately 35 minutes to complete. Please try to complete the questionnaire in one sitting, answer all sections and all relevant questions. Please answer the questions as honestly as you can, remembering your responses are anonymous and strictly confidential. Please complete this questionnaire on your own and do not compare your answers with anyone else.

If you have any questions or concerns about the material in this questionnaire, you can contact PhD Candidate Jessie Bendavid or Principal Researcher Dr Christina Bryant on (03) 8345 3906.

We thank you for your time and contribution to this research

When you have finished, please return this questionnaire along with the signed informed consent form to the researchers using the reply-paid envelope provided, or sending to:

Attention Dr Christina Bryant, Royal Women’s Hospital, Reply Paid 65760, PARKVILLE VIC 3052.

Section 1 – This section is gathering information about you SECTION 1 – This section is gathering information about you We would like to gather some basic information about you. Please fill in the gaps and tick the option appropriate to you. All participants please answer this section.

1. ID number …………………… Today’s date…………………………. 243

2. What is your current relationship status?  Married  Single/never married  Separated/divorced  Widowed  Other. Please specify: …………………… 3. What is your current living situation?  Living alone (or with unrelated others)  Lone parent (yourself and child(ren))  Living with spouse/partner (no children)  Living with parent(s)  Living with your spouse/partner and child(ren)  Other. Please specify: …………………… 4. Please indicate the number of children you have in the spaces provided Natural child(ren) ……. Adopted child(ren) ……. Step-child(ren) ……. Foster child(ren) ……. 5. Have you ever been diagnosed with a mental health problem?  Yes  No (Go to section 2) 6. If so, which mental health problem have you been diagnosed with?  Depression  Anxiety  Substance abuse  Other. Please specify: …………………… 7. Are you currently experiencing symptoms of a mental health problem?  Yes  No (Go to section 2) 8. Which mental health problems are you currently experiencing?  Depression  Anxiety  Substance abuse  Other Please specify: ……………………

Section 2 – The following questions pertain to your recent pregnancy loss, which was diagnosed at the Royal Women’s Hospital

All participants please answer this section.

1. What kind of management or treatment did you have for the pregnancy loss?  No treatment (expectant management)  Treatment with medication to hasten the passing of the pregnancy tissue  Surgical treatment (dilation and curettage) 2. In response to the pregnancy loss, have you participated in support resources (for example, support groups, internet chat rooms/message boards, therapy etc.)?  Yes  No Please specify:………………... ………………………………….. 3. Since the pregnancy loss, have you been trying to conceive?  Yes  No 4. Since the pregnancy loss, have you gotten pregnant again?  Yes  No 244

5. Have you experienced another pregnancy loss since you completed the first questionnaire for this study?  Yes  No

Section 3 – This section is about how you think, feel and behave

3.1 All participants please answer this section. Below is a list of ways you might have felt or behaved. Please select the response that best reflects how each statement applies to you. The items refer to how often you felt or behaved during the past week.

During the past week… Rarely or Some or a Occasionally or a Most or none of the little of the moderate amount all of the time (less time (1-2 of time (3-4 days) time (5-7 than 1 day) days) days)

1. I was bothered by 0 1 2 3 things that usually don’t bother me 2. I did not feel like 0 1 2 3 eating; my appetite was poor 3. I felt that I could not 0 1 2 3 shake off the blues even with help from my family or friends 4. I felt that I was just as 0 1 2 3 good as other people 5. I had trouble keeping 0 1 2 3 my mind on what I was doing 6. I felt depressed 0 1 2 3 7. I felt that everything I 0 1 2 3 did was an effort 8. I felt hopeful about 0 1 2 3 the future 9. I thought my life had 0 1 2 3 been a failure 10. I felt fearful 0 1 2 3 11. My sleep was restless 0 1 2 3 12. I was happy 0 1 2 3 13. I talked less than 0 1 2 3 usual 14. I felt lonely 0 1 2 3 15. People were 0 1 2 3 unfriendly 16. I enjoyed life 0 1 2 3 17. I had crying spells 0 1 2 3 18. I felt sad 0 1 2 3 19. I felt that people 0 1 2 3 dislike me 20. I could not get “going” 0 1 2 3

245

3.2 All participants please answer this section. A number of statements which people have used to describe themselves are given below. Read each statement and choose the appropriate number to the right of the statement to indicate how you feel right now, that is at this moment. There are no right or wrong answers. Do not spend too much time on any one statement but give the answer which seems to describe your present feelings best.

At this moment… Not at all Somewhat Moderately Very much 1. I feel calm 1 2 3 4 2. I feel secure 1 2 3 4

3.3 All participants please answer this section. A number of statements which people have used to describe themselves are given below. Read each statement and then choose the appropriate number to the right of the statement to indicate how you generally feel.

Generally… Not at all Somewhat Moderately Very much

1. I feel pleasant 1 2 3 4 2. I feel nervous and restless 1 2 3 4 3. I feel satisfied with myself 1 2 3 4

3.4 All participants please answer this section. Each of the items below is a statement of thoughts and feelings that some people have concerning a loss such as yours. There are no right or wrong responses to these statements. For each item, tick the box which best indicates the extent to which you agree or disagree with it at the present time. If you are not certain, use the “neither” category. Please try to use this category only when you truly have no opinion.

At the present time… Strongly Agree Neither Disagree Strongly agree disagree disagree nor agree 14. I cry when I think about 1 2 3 4 5 him/her 15. I feel guilty when I think 1 2 3 4 5 about the baby 16. I feel physically ill when I 1 2 3 4 5 think about the baby 17. I feel unprotected in a 1 2 3 4 5 dangerous world since he/she died 18. I try to laugh, but nothing 1 2 3 4 5 seems funny anymore 19. Time passes so slowly 1 2 3 4 5 since the baby died 20. The best part of me died 1 2 3 4 5 with the baby 21. I have let people down 1 2 3 4 5 since the baby died 22. I feel worthless since 1 2 3 4 5 he/she died

23. I blame myself for the 1 2 3 4 5 baby’s death 24. I get cross at my friends 1 2 3 4 5 and relatives more than I should 25. Sometimes I feel like I 1 2 3 4 5 need a professional counsellor to help me get my life back together again 26. I feel as though I’m just 1 2 3 4 5 existing and not really living since he/she died 27. I feel so lonely since 1 2 3 4 5 he/she died 28. I feel somewhat apart and 1 2 3 4 5 remote, even among friends 29. It’s safer not to love 1 2 3 4 5 30. I find it difficult to make 1 2 3 4 5 decisions since the baby died 31. I worry about what my 1 2 3 4 5 future will be like 32. Being a bereaved parent 1 2 3 4 5 means being a “Second- Class Citizen” 33. It feels great to be alive 1 2 3 4 5

3.5 All participants please answer this section. Listed below are a number of symptoms that you may or may not have experienced since the pregnancy loss. Please indicate by circling 1 for Yes or 0 for No, whether you believe that you have experienced any of these 247

symptoms since the pregnancy loss and whether you believe that these symptoms are related to the pregnancy loss.

3.6 All participants please answer this section. We are interested in your own personal views of how you now see your pregnancy loss. Please indicate how much you agree or disagree with the following statements about your pregnancy loss.

VIEWS ABOUT YOUR Strongly Agree Neither Disagree Strongly PREGNANCY LOSS agree agree nor disagree disagree 1. The pregnancy loss is a 1 2 3 4 5 serious condition 2. The pregnancy loss has 1 2 3 4 5 major consequences on my life 3. The pregnancy loss does 1 2 3 4 5 not have much effect on my life 4. The pregnancy loss 1 2 3 4 5 strongly affects the way others see me 5. The pregnancy loss has 1 2 3 4 5 serious financial consequences 6. The pregnancy loss 1 2 3 4 5 causes difficulties for those who are close to me 7. There is a lot which I can 1 2 3 4 5 do to control my symptoms 8. What I do can determine 1 2 3 4 5 whether my symptoms get better or worse 9. The course of my 1 2 3 4 5 symptoms depends on me 10. Nothing I do will affect my 1 2 3 4 5 symptoms 248

VIEWS ABOUT YOUR Strongly Agree Neither Disagree Strongly PREGNANCY LOSS agree agree nor disagree disagree 11. I have the power to 1 2 3 4 5 influence my symptoms 12. My actions will have no 1 2 3 4 5 effect on the outcome of my symptoms 13. The symptoms of my 1 2 3 4 5 condition are puzzling to me 14. The pregnancy loss is a 1 2 3 4 5 mystery to me 15. I don’t understand the 1 2 3 4 5 pregnancy loss 16. The pregnancy loss 1 2 3 4 5 doesn’t make any sense to me 17. I have a clear picture or 1 2 3 4 5 understanding of the pregnancy loss 18. I get depressed when I 1 2 3 4 5 think about the pregnancy loss 19. When I think about the 1 2 3 4 5 pregnancy loss I get upset 20. The pregnancy loss 1 2 3 4 5 makes me feel angry 21. The pregnancy loss does 1 2 3 4 5 not worry me 22. Having this pregnancy 1 2 3 4 5 loss makes me feel anxious 23. The pregnancy loss 1 2 3 4 5 makes me feel afraid

3.7 All participants please answer this section. Usually no treatable cause is found for a pregnancy loss. Research tells us that about half of all pregnancy losses happen because the chromosomes in the embryo are abnormal and the pregnancy doesn’t develop properly from the start. In this case, pregnancy loss is nature’s way of dealing with an abnormal embryo. Nothing can be done to prevent pregnancy loss from occurring if a pregnancy is developing abnormally. We are interested in what you consider may have been the cause of your pregnancy loss. As people are very different there is no correct answer for this question. We are most interested in your own views about the factors that caused your pregnancy loss rather than what others, including doctors or family may have suggested to you. Below is a list that some people might think cause a pregnancy loss. Please indicate how much you agree or disagree that they were causes for you by circling the appropriate number.

249

POSSIBLE CAUSES Strongly Agree Neither Disagree Strongly agree agree disagree nor disagree 1. Stress or worry 1 2 3 4 5 2. Heredity – it runs in my 1 2 3 4 5 family 3. Diet or eating habits 1 2 3 4 5 4. Chance or bad luck 1 2 3 4 5 5. Poor medical care in my past 1 2 3 4 5 6. Pollution in the environment 1 2 3 4 5 7. My own behaviour 1 2 3 4 5 8. My mental attitude e.g. 1 2 3 4 5 thinking about life negatively 9. Family problems or worries 1 2 3 4 5 10. Overwork 1 2 3 4 5 11. My emotional state e.g. 1 2 3 4 5 feeling down, lonely, anxious, empty 12. Ageing 1 2 3 4 5 13. Smoking 1 2 3 4 5 14. Accident or injury 1 2 3 4 5 15. My personality 1 2 3 4 5 16. Altered immunity 1 2 3 4 5 17. My partner’s behaviour 1 2 3 4 5 18. My partner’s personality 1 2 3 4 5 19. Exercising 1 2 3 4 5 20. God’s will 1 2 3 4 5 21. Fate 1 2 3 4 5 22. Problem with the baby 1 2 3 4 5 23. A germ or virus 1 2 3 4 5 24. Problem with implantation 1 2 3 4 5

3.8 Please list in rank-order the three most important factors that you now believe caused your pregnancy loss. You may use any of the items from the box above, or you may have additional ideas of your own.

1. The most important cause for me is: 2. The second most important cause for me is: 3. The third most important cause for me is:

Is there anything else about your experience of pregnancy loss that you would like to tell us?

250

Thank you for taking the time to complete this questionnaire. Your participation to this research is valuable to us and will assist us to better understand the experience of pregnancy loss.

251

Psychological Outcomes of Early Pregnancy Loss Partners - Time 2

ABOUT THIS QUESTIONNAIRE

This questionnaire asks you about how you think and feel about your pregnancy loss.

If you have any questions or concerns about the material in this questionnaire, you can contact PhD Candidate Jessie Bendavid or Principal Researcher Dr Christina Bryant on (03) 8345 3906.

We thank you for your time and contribution to this research

When you have finished, please return this questionnaire along with the signed informed consent form to the researchers using the reply-paid envelope provided, or sending to:

Attention Dr Christina Bryant, Royal Women’s Hospital, Reply Paid 65760, PARKVILLE VIC 3052.

1. ID number …………………… Today’s date…………………………. 2. What is your current relationship status?  Married  Single/never married  Separated/divorced  Widowed  Other. Please specify: …………………… 252

3. What is your current living situation?  Living alone (or with unrelated others)  Lone parent (yourself and child(ren))  Living with spouse/partner (no children)  Living with parent(s)  Living with your spouse/partner and child(ren)  Other. Please specify: …………………… 4. Please indicate the number of children you have in the spaces provided Natural child(ren) ……. Adopted child(ren) ……. Step-child(ren) ……. Foster child(ren) ……. 5. Have you ever been diagnosed with a mental health problem?  Yes  No (Go to section 2) 6. If so, which mental health problem have you been diagnosed with?  Depression  Anxiety  Substance abuse  Other. Please specify: …………………… 7. Are you currently experiencing symptoms of a mental health problem?  Yes  No (Go to section 2) 8. Which mental health problems are you currently experiencing?  Depression  Anxiety  Substance abuse  Other Please specify: ……………………

Section 2 – The following questions pertain to your recent pregnancy loss, which was diagnosed at the Royal Women’s Hospital

All participants please answer this section.

1. What kind of management or treatment did your partner have for the pregnancy loss?  No treatment (expectant management)  Treatment with medication to hasten the passing of the pregnancy tissue  Surgical treatment (dilation and curettage) 2. In response to the pregnancy loss, have you participated in support resources (for example, support groups, internet chat rooms/message boards, therapy etc.)?  Yes  No Please specify:………………... ………………………………….. 3. Since the pregnancy loss, have you been trying to conceive?  Yes  No 4. Since the pregnancy loss, have you gotten pregnant again?  Yes  No 5. Have you experienced another pregnancy loss since you completed the first questionnaire for this study?  Yes  No

Section 3 – This section is about how you think, feel and behave

253

During the past week… Rarely or Some or a Occasionally or a Most or none of the little of the moderate amount all of the time (less time (1-2 of time (3-4 days) time (5-7 than 1 day) days) days)

254

At this moment… Not at all Somewhat Moderately Very much 1. I feel calm 1 2 3 4 2. I feel secure 1 2 3 4

Generally… Not at all Somewhat Moderately Very much 1. I feel pleasant 1 2 3 4 2. I feel nervous and restless 1 2 3 4 3. I feel satisfied with myself 1 2 3 4

At the present time… Strongly Agree Neither Disagree Strongly agree disagree disagree nor agree 17. I feel unprotected in a 1 2 3 4 5 dangerous world since he/she died 18. I try to laugh, but nothing 1 2 3 4 5 seems funny anymore 19. Time passes so slowly 1 2 3 4 5 since the baby died 20. The best part of me died 1 2 3 4 5 with the baby 21. I have let people down 1 2 3 4 5 since the baby died 22. I feel worthless since 1 2 3 4 5 he/she died

3.5 All participants please answer this section. We are interested in your own personal views of how you now see your pregnancy loss. Please indicate how much you agree or disagree with the following statements about your pregnancy loss.

256

VIEWS ABOUT YOUR Strongly Agree Neither Disagree Strongly PREGNANCY LOSS agree agree nor disagree disagree

1. The pregnancy loss is a 1 2 3 4 5 serious condition 2. The pregnancy loss has 1 2 3 4 5 major consequences on my life 3. The pregnancy loss does 1 2 3 4 5 not have much effect on my life 4. The pregnancy loss 1 2 3 4 5 strongly affects the way others see me 5. The pregnancy loss has 1 2 3 4 5 serious financial consequences 6. The pregnancy loss 1 2 3 4 5 causes difficulties for those who are close to me 7. There is a lot which I can 1 2 3 4 5 do to control my partner’s symptoms 8. What I do can determine 1 2 3 4 5 whether my partner’s symptoms get better or worse 9. The course of my partner’s 1 2 3 4 5 symptoms depends on me 10. Nothing I do will affect my 1 2 3 4 5 partner’s symptoms 11. I have the power to 1 2 3 4 5 influence my partner’s symptoms 12. My actions will have no 1 2 3 4 5 effect on the outcome of my partner’s symptoms 13. The symptoms of the 1 2 3 4 5 pregnancy loss are puzzling to me 14. The pregnancy loss is a 1 2 3 4 5 mystery to me 15. I don’t understand the 1 2 3 4 5 pregnancy loss 16. The pregnancy loss 1 2 3 4 5 doesn’t make any sense to me 17. I have a clear picture or 1 2 3 4 5 understanding of the pregnancy loss 18. I get depressed when I 1 2 3 4 5 think about the pregnancy loss 257

VIEWS ABOUT YOUR Strongly Agree Neither Disagree Strongly PREGNANCY LOSS agree agree nor disagree disagree

19. When I think about the 1 2 3 4 5 pregnancy loss I get upset 20. The pregnancy loss 1 2 3 4 5 makes me feel angry 21. The pregnancy loss does 1 2 3 4 5 not worry me 22. Having this pregnancy 1 2 3 4 5 loss makes me feel anxious 23. The pregnancy loss 1 2 3 4 5 makes me feel afraid

3.6 All participants please answer this section. Usually no treatable cause is found for a pregnancy loss. Research tells us that about half of all pregnancy losses happen because the chromosomes in the embryo are abnormal and the pregnancy doesn’t develop properly from the start. In this case, pregnancy loss is nature’s way of dealing with an abnormal embryo. Nothing can be done to prevent pregnancy loss from occurring if a pregnancy is developing abnormally. We are interested in what you consider may have been the cause of your pregnancy loss. As people are very different there is no correct answer for this question. We are most interested in your own views about the factors that caused your pregnancy loss rather than what others, including doctors or family may have suggested to you. Below is a list that some people might think cause a pregnancy loss. Please indicate how much you agree or disagree that they were causes for you by circling the appropriate number.

POSSIBLE CAUSES Strongly Agree Neither Disagree Strongly agree agree nor disagree disagree

1. Stress or worry 1 2 3 4 5 2. Heredity – it runs in my 1 2 3 4 5 family 3. Diet or eating habits 1 2 3 4 5 4. Chance or bad luck 1 2 3 4 5 5. Poor medical care in my 1 2 3 4 5 past 6. Pollution in the 1 2 3 4 5 environment 7. My own behaviour 1 2 3 4 5 8. My mental attitude e.g. 1 2 3 4 5 thinking about life negatively 9. Family problems or 1 2 3 4 5 worries 10. Overwork 1 2 3 4 5 11. My emotional state e.g. 1 2 3 4 5 feeling down, lonely, anxious, empty 12. Ageing 1 2 3 4 5 258

POSSIBLE CAUSES Strongly Agree Neither Disagree Strongly agree agree nor disagree disagree

13. Smoking 1 2 3 4 5 14. Accident or injury 1 2 3 4 5 15. My personality 1 2 3 4 5 16. Altered immunity 1 2 3 4 5 17. My partner’s behaviour 1 2 3 4 5 18. My partner’s personality 1 2 3 4 5 19. Exercising 1 2 3 4 5 20. God’s will 1 2 3 4 5 21. Fate 1 2 3 4 5 22. Problem with the baby 1 2 3 4 5 23. A germ or virus 1 2 3 4 5 24. Problem with 1 2 3 4 5 implantation

3.7 All participants please list in rank-order the three most important factors that you now believe caused your pregnancy loss. You may use any of the items from the box above, or you may have additional ideas of your own.

1. The most important cause for me is: 2. The second most important cause for me is: 3. The third most important cause for me is:

Is there anything else about your experience of pregnancy loss that you would like to tell us?

Thank you for taking the time to complete this questionnaire. Your participation to this research is valuable to us and will assist us to better understand the experience of pregnancy loss. 259

Appendix B: Ethics Approval

260

Appendix C: Preliminary Analyses and Results

Table C.1

ANOVA for Multiple Regression Predicting Grief from Illness Perceptions, for Women – T1

Variable df F P

Regression 4 16.6 <.001

Identity 1 4.09 .047

Consequences 1 16 <.001

Control 1 4.46 .039

Coherence 1 11.4 .001

Error 63

Total 67

Note. df = degrees of freedom.

Table C.2

Model Summary of Multiple Regression Predicting Grief from Illness Perceptions, for Women – T1

S R2 Adjusted R2

18.2 51.3% 48.2%

261

Table C.3

Coefficients of Illness Perceptions Predicting Grief for Women – T1

Variable Coefficient S.E. 95% CI t p

Constant 96.2 16.5 -63.2, 129 5.83 <.001

Identity 2.59 1.28 .03, 5.15 2.02 .047

Consequences -2.1 .52 -3.14, -1.05 -3.99 <.001

Control -.96 .45 -1.86, -.05 -2.11 .039

Coherence 1.88 .56 0.76, 2.99 3.37 .001

Note. S.E. = standard error; CI = confidence interval.

Table C.4

ANOVA for Multiple Regression Predicting Grief from Age, Number of Children and Illness

Perceptions, for Women – T1

Variable df F p

Regression 6 10.7 <.001

Age 1 2.01 .162

Total Children 1 .25 .617

Illness identity 1 2.47 .122

Consequences 1 15.4 <.001

Control 1 4.63 .036

Coherence 1 9.84 .003

Error 58

Total 64

Note. df = degrees of freedom.

262

Table C.5

Model Summary of Multiple Regression Predicting Grief from Age, Number of Children and Illness

Perceptions, for Women – T1

S R2 Adjusted R2

18.2 52.5% 47.6%

Table C.6

Coefficients of Age, Number of Children and Illness Perceptions Predicting Grief for Women – T1

Variable Coefficient S.E. 95% CI t p

Constant 121 24.1 72.6, 169 5.01 <.001

Age -.69 .49 -1.68, 0.29 -1.42 .162

Total Children 1.62 3.22 -4.83, 8.07 .5 .617

Identity 2.12 1.35 -.58, 4.83 1.57 .122

Consequences -2.08 .53 -3.13, -1.02 -3.92 <.001

Control -.99 .46 -1.92, -.07 -2.15 .036

Coherence 1.82 .58 .66, 2.98 3.14 .003

Note. S.E. = standard error; CI = confidence interval.

263

Table C.7

ANOVA for Multiple Regression Predicting Depression from Age, Number of Children and Illness

Perceptions, for Women – T1

Variable df F p

Regression 6 5.6 <.001

Age 1 3.48 .067

Total Children 1 1.6 .212

Illness identity 1 2.89 .084

Consequences 1 1.35 .25

Control 1 .63 .432

Coherence 1 10.28 .002

Error 58

Total 64

Note. df = degrees of freedom.

Table C.8

Model Summary of Multiple Regression Predicting Depression from Age, Number of Children and

Illness Perceptions, for Women – T1

S R2 Adjusted R2

9.77 36.7% 30.1%

264

Table C.9

Coefficients of Age, Number of Children and Illness Perceptions, Predicting Depression for Women –

Variable Coefficient S.E. 95% CI t p

Constant 26.1 12.9 .2, 52 2.02 .048

Age -.49 .263 -1.02, .036 -1.87 .067

Total Children 2.19 1.73 -1.28, 5.65 1.26 .212

Identity 1.23 .73 -0.22, 2.69 1.7 .094

Consequences -.33 .28 -.9, .24 -1.16 .25

Control -.2 .25 -.69, .3 -.79 .432

Coherence .1 .31 .37, 1.62 3.21 .002

Note. S.E. = standard error; CI = confidence interval.

265

Table C.10

ANOVA for Multiple Regression Predicting State Anxiety from Age, Number of Children and Illness

Perceptions, for Women – T1

Variable df F p

Regression 6 3.56 .005

Age 1 1.71 .196

Total Children 1 .46 .503

Illness identity 1 5.21 .026

Consequences 1 3 .089

Control 1 .62 .436

Coherence 1 1.53 .221

Error 58

Total 64

Note. df = degrees of freedom.

Table C.11

Model Summary of Multiple Regression Predicting State Anxiety from Age, Number of Children and

Illness Perceptions, for Women – T1

S R2 Adjusted R2

11.77 26.9% 19.4%

266

Table C.12

Coefficients of Age, Number of Children and Illness Perceptions Predicting State Anxiety for Women –

Variable Coefficient S.E. 95% CI t p

Constant 57 15.6 25.7, 88.2 3.65 .001

Age -.42 .32 -1.05, .22 -1.31 .196

Total Children 1.41 2.1 -2.77, 5.58 .67 .503

Identity 2 .88 .245, 3.75 2.28 .026

Consequences -.59 .34 -1.28, .092 -1.73 .089

Control -.23 .3 -.83, .36 -.78 .436

Coherence .46 .38 -.29, 1.21 1.24 .221

Note. S.E. = standard error; CI = confidence interval.

267

Table C.13

Best Subsets Regression Predicting Grief from Illness Perceptions and Trait Anxiety for Men – T2

Variables R2 Adjusted R2 S STAI-T Consequences Control Coherence

1 15.9 10.3 11.3 X

1 8.3 2.2 11.8 X

1 5.9 0 11.9 X

1 .9 0 12.3 X

*2 40 31.4 9.88 X X

2 19.7 8.2 11.4 X X

2 17.6 5.8 11.6 X X

3 45 32.3 9.81 X X X

3 40.4 26.6 10.2 X X X

3 26 8.9 11.4 X X X

3 21 2.7 11.8 X X X

4 45.1 26.8 10.2 X X X X

Note: * denotes model selected.

268

Table C.14

ANOVA for Multiple Regression of Grief Predicted from Control and Consequences for Men – T2

Variable df F P

Regression 2 4.66 .028

Consequences 1 7.39 .017

Control 1 5.6 .033

Error 14

Total 16

Note. df = degrees of freedom.

Table C.15

Model Summary of Multiple Regression Predicting Grief from Control and Consequences for Men – T2

S R2 Adjusted R2

9.88 40% 31.4%

Table C.16

Coefficients of Predictors of Grief for Men – T2

Variable Coefficient S.E. 95% CI t p

Constant 49.1 14.1 18.9, 79.2 3.49 .004

Consequences -1.58 .58 -2.83, -.33 -2.72 .017

Control 2.19 .93 .21, 4.18 2.37 .033

Note. S.E. = standard error; CI = confidence interval.

269

Table C.17

Best Subsets Regression Predicting Depression from Illness Perceptions and Trait Anxiety for Men –

Variables R2 Adjusted R2 S STAI-T Consequences Control Coherence

1 34 29.6 2.79 X

1 21.7 16.4 3.04 X

1 15.2 9.5 3.16 X

1 8.8 2.8 3.27 X

*2 44.3 36.3 2.65 X X

2 43.3 35.2 2.67 X X

2 35.9 26.7 2.84 X X

2 23.3 12.4 3.11 X X

3 46.2 33.7 2.7 X X X

3 44.3 31.4 2.75 X X X

3 43.4 30.4 2.77 X X X

3 24.1 6.6 3.21 X X X

4 46.2 28.2 2.81 X X X X

Note: * denotes model selected.

270

Table C.18

ANOVA for Multiple Regression of Depression Predicted from Trait Anxiety and Coherence for Men –

Variable df F p

Regression 2 5.56 .017

STAI-T 1 7.32 .017

Coherence 1 2.58 .13

Error 14

Total 16

Note. df = degrees of freedom.

Table C.19

Model Summary of Multiple Regression Predicting Depression from Trait Anxiety and Coherence for

Men – T2

S R2 Adjusted R2

2.65 44.3% 36.3%

Table C.20

Coefficients of Predictors of Depression for Men – T2

Variable Coefficient S.E. 95% CI t p

Constant -6.79 3.26 -13.8, .19 -2.09 .056

STAI-T .27 .1 .056, .49 2.7 .017

Coherence .27 .17 -.089, .622 1.61 .13

Note. S.E. = standard error; CI = confidence interval.

271

Table C.21

Best Subsets Regression Predicting State Anxiety from Illness Perceptions and Trait Anxiety for Men –

Variables R2 Adjusted R2 S STAI-T Consequences Control Coherence

*1 83.3 82.2 3.08 X

1 6.9 0.7 7.28 X

1 6.7 0.5 7.28 X

1 2.5 0 7.45 X

2 83.6 81.2 3.17 X X

2 83.3 81.0 3.19 X X

2 83.3 80.9 3.19 X X

2 9.7 0 7.42 X X

3 83.9 80.1 3.26 X X X

3 83.6 79.8 3.28 X X X

3 83.4 79.5 3.31 X X X

3 10.0 0 7.69 X X X

4 83.9 78.5 3.39 X X X X

Note: * denotes model selected.

272

Table C.22

ANOVA for Multiple Regression of State Anxiety Predicted from Trait Anxiety for Men – T2

Variable df F p

Regression 1 74.96 <.001

STAI-T 1 74.96 <.001

Error 15

Total 16

Note. df = degrees of freedom.

Table C.23

Model Summary of Multiple Regression Predicting State Anxiety from Trait Anxiety for Men – T2

S R2 Adjusted R2

3.08 83.3% 82.2%

Table C.24

Coefficients of Predictors of State Anxiety for Men – T2

Variable Coefficient S.E. 95% CI t p

Constant -1.47 3.46 -8.85, 5.9 -.43 .676

STAI-T 1 .12 .75, 1.24 8.66 <.001

Note. S.E. = standard error; CI = confidence interval.

Minerva Access is the Institutional Repository of The University of Melbourne

Author/s: Bendavid, Jessie

Title: Psychological outcomes of those experiencing early pregnancy loss

Date: 2019

Persistent Link: http://hdl.handle.net/11343/227179

File Description: Final thesis file

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