'who's left holding the baby?' exploring couples' decision-making to have a biological baby ...

345 Pages·2015·2.91 MB·English

‘WHO’S LEFT HOLDING THE BABY?’
EXPLORING COUPLES’ DECISION-MAKING TO
HAVE A BIOLOGICAL BABY FOLLOWING A
WOMAN’S DIAGNOSIS OF MARFAN
SYNDROME

Annie Hinchliff

Submitted in partial fulfillment of the requirements for the
Doctorate in Counselling Psychology and Psychotherapy
by Professional Studies (DCPsych).
A joint programme of Metanoia Institute and Middlesex
University

MARCH 2015
CONTENTS

ACKNOWLEDGMENTS

ABSTRACT

1. INTRODUCTION 1
1.1 What is Marfan syndrome? 1
1.2 Background to the research topic 3
1.3 Research aims and objectives 6
1.4 Research question 7
1.5 Contribution of the present study to the field 7
1.6 Uniqueness of the contribution 9
1.7 Personal reflexivity 10
1.8 Considering the role of counselling psychology in healthcare 16
1.9 Marfan in the media 21

2. LITERATURE REVIEW 24
2.1 Marfan syndrome and pregnancy 24
2.2 The role of genetic counselling 27
2.3 Research into psychological adjustment to a potentially life-threatening event 34
2.4 Reproductive decision-making with a genetically inherited condition 44
2.5 The couple relationship 50
2.6 The current research 54
3. METHODOLOGY 56
3.1 Why qualitative methods 56
3.2 Considering approach and methodology 58
3.3 Why phenomenological research methods 59
3.4 Interpretative phenomenological analysis 62
3.5 Design 67
3.6 Participant recruitment and selection 69
3.7 Participants 71
3.8 Data gathering 72
3.9 Data analysis 75
3.10 Ethical issues and confidentiality 78
3.11 Trustworthiness 82
3.12 Establishing trustworthiness as an insider research 86
3.13 Methodological reflexivity 90

4. FINDINGS 99
4.1 A. Her decision is already made 100
A predetermined decision 101
Female drive and identity 103
Urgency of timing and age 105
MFS as strength and resilience 107
Comparison with past self 109
4.2 B. Creating an informed decision 111
She wants him to know the facts 112
Sharing responsibility for decision 114
Coping with doctors 117
The meaning of genetic counselling 120
The role of the Internet 122
Exploring options 123
Assessing the risks 125
Optimism of medical advancements 128

4.3 C. Finding psychosocial support 130
The effects of her mother’s experience 131
The strength of the relationship 133
Temporary parallel lives 135
Limitations of friends’ support 138
The role of support groups 140
Psychological counselling as potentially helpful 141
The interview as a therapeutic experience 144

4.4 D. Existing with the fallout of the decision 146
Coping with high-risk pregnancy 146
Her concerns for child 148
He fears losing her 151
He copes and cries alone 154
Feeling responsible, selfish, guilty 156
Acceptance of gamble, uncertainty, fate 158
5. DISCUSSION 161
5.1 A. Her decision is already made 161
A predetermined decision 161
Female drive and identity 163
Urgency of timing and age 165
MFS as strength and resilience/Comparison with past self 168

5.2 B. Creating an informed decision 170
She wants him to know the facts 170
Sharing responsibility for decision 171
Coping with doctors 175
The meaning of genetic counselling 177
The role of the Internet 179
Exploring options 181
Assessing the risks 183
Optimism of medical advancements 187

5.3 C. Finding psychosocial support 188
The effects of her mother’s experience 188
The strength of the relationship 190
Temporary parallel lives 193
Limitations of friends’ support . 197
The role of support groups 198
Psychological counselling as potentially helpful 199
The interview as a therapeutic experience 201
5.4 D. Existing with the fallout of the decision 203
Coping with high-risk pregnancy 203
Her concerns for child 205
He fears losing her 207
He copes and cries alone 208
Feeling responsible, selfish, guilty 210
Acceptance of gamble, uncertainty, fate 213

6. BEING A THERAPIST AND RESEARCHER 218

7. REFLEXIVITY 221

8. CRITIQUE AND SUGGESTIONS FOR FURTHER RESEARCH 227

9. CONTRIBUTION 232
9.1 Service provision 232
9.2 Internet resources 240
9.3 Marfan associations and support groups 241
9.4 The Media 242
9.5 The practice of counselling psychology and psychotherapy 242

10. CONCLUSION 248
REFERENCES 251

APPENDICES 302
Appendix A Advertisement for participants 303
Appendix B Preliminary list of emerging themes 304
Appendix C Emergent themes in clusters 310
Appendix D Gender clusters 316
Appendix E Superordinate themes 321
Appendix F Master list of themes 323
Appendix G Summary of emerging findings 328
Appendix H Ethical consent 336

LIST OF TABLES
Table 1. Demographics of participants 72
Table 2. Four superordinate themes supported by master themes 99

LIST OF FIGURES
Figure 1. Suggested pathway overview for couple or individual with a diagnosis of
Marfan syndrome facing reproductive decision 239
ACKNOWLEDGEMENTS

For my family, I did it for you.

To my academic supervisor and tutors for their invaluable
wisdom and support, my friends and colleagues for their
encouragement, the geneticists who generously gave their
time and educated me in the clinical aspects of Marfan
syndrome, my research participants who shared their stories
and helped me create new knowledge that I hope will benefit
families everywhere.

Thank you
ABSTRACT

Research into the psychological effects of reproductive decision-making when
an individual has a diagnosis of Marfan syndrome, a genetically inherited and
potentially life-threatening condition, is rare and mainly quantitative in nature.
In response, this study has investigated the experience of couples’ decision-
making to have a baby when a woman has been diagnosed with Marfan
syndrome. The study was conducted using unstructured interview data,
analysed using the qualitative methodology of Interpretative
Phenomenological Analysis (IPA). The participants were six couples with a
female diagnosis of Marfan syndrome. Five couples with children provided
retrospective data and one couple making the decision to have a baby
provided live data. Four superordinate themes emerged: her decision is
already made; creating an informed decision; finding psychosocial support;
existing with the fallout of the decision. The experience of decision-making
was complex and multidimensional for the males, females and couples. The
women demonstrated a strong drive to have a baby despite the 50/50 odds of
having a child with Marfan syndrome, whereas the men described the tension
between wanting a child and coping with the potentially life-threatening risks
for a woman in pregnancy and childbirth. A compelling account of the
couples’ difficulties in exploring their options and assessing the risks with
medical professionals emerged. It is argued that this research provides
important insights for counselling psychologists and other professionals when
working with individuals and couples affected by Marfan syndrome and other
genetically inherited conditions at the critical time of coping with reproductive
decision-making.
1

1. INTRODUCTION

1.1 What is Marfan syndrome?
Marfan syndrome is a complex syndrome named after a French paediatrician,
Antoine Marfan. In 1896 he described a young girl of five years old called
Gabrielle as having disproportionately long, thin limbs, fingers and toes. Her
spine curved abnormally and she had poor muscle development. By the
beginning of the Twentieth Century, other patients were described with similar
characteristics and some reported eye problems as well. It was referred to as
a syndrome as there were a group of symptoms that frequently occur together
in a pattern that doctors were able to recognise.

Marfan syndrome is an inheritable condition caused by a single abnormal,
mutant gene on Chromosome 15. It is a disorder of the connective tissue,
which can be described as ‘the glue and the scaffolding of the body’ (Pyeritz &
Gasner, 1999, p. 2). All the organs of the body contain connective tissue that
holds the body together and is responsible for providing a structure for how
bodies develop and grow. In Marfan syndrome the defective connective
tissue does not act as it should. This is because the production of one of the
elastic proteins in the connective tissue called fibrillin, located on
Chromosome 15, is reduced and therefore many parts of the body do not
have the strength or stretch required during growth and development. As
connective tissue is found throughout the body, the effects of Marfan
syndrome can be found in the bones and ligaments, the eyes, the heart and
blood vessels, the lungs, skin, tendons, joints and the nervous system.