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Continuing Bonds: Parent's Experience of an Ongoing Relationship with Their Stillborn Baby

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Continuing Bonds: Parent's Experience of an Ongoing Relationship with Their Stillborn Baby Jones, Emma Elizabeth (2020) Continuing bonds: parent's experience of an ongoing relationship with their stillborn baby. Doctoral thesis, University of Sunderland. Downloaded from: http://sure.sunderland.ac.uk/id/eprint/11544/ Usage guidelines Please refer to the usage guidelines at http://sure.sunderland.ac.uk/policies.html or alternatively contact [email protected]. CONTINUING BONDS: PARENTS’ EXPERIENCE OF AN ONGOING RELATIONSHIP WITH THEIR STILLBORN BABY EMMA ELIZABETH JONES A thesis submitted in partial fulfilment of the requirements of the University of Sunderland for the degree of Doctor of Philosophy January 2020 1 Acknowledgements Conducting this doctoral research over the past 6 years has presented an array of challenges that I could not have met without the continued support of others. Firstly, I would like to express a heartfelt thank you to Michelle for making so many sacrifices to keep me company every step of the way. I could not have come this far without your constant commitment and belief in me. I am incredibly grateful to my parents, Dad, and Mam and Frank, for contributing in so many ways over the years, from help with food parcels to fees to faux fur coats! I feel truly blessed to have the unwavering love and support of you all. I would also like to acknowledge my grandparents, whose legacies live on and continue to have a positive impact on my life. I owe a considerable debt of gratitude to Dr Rosalind Crawley, who not only inspired me to embark upon this extraordinary journey, but, as Director of Studies, has encouraged and guided me with patience and foresight throughout. Your wisdom, professionalism, thoughtfulness and generosity have been greatly appreciated. I am also truly grateful to my supervisors, Dr Lyn Brierley-Jones and Dr Catherine Kenny for providing sound advice and insightful feedback during the course of the project, and for doing so with a friendly touch. It has been an absolute pleasure to work with you all. I would like to recognise the valued contribution of Sands and a number of their dedicated employees, particularly Laura and Ashleigh, for helping with recruitment, development of the questionnaire and piloting. The support provided by other charitable bodies and members of the International Stillbirth Alliance in promoting the questionnaire study has also been greatly appreciated. Furthermore, I am very thankful to Samantha for sharing your experiential knowledge during the design process. Finally, a special thank you to all of the parents who have contributed to this project. The kindness and generosity you have shown in sharing your experience and your babies’ stories with me will never be forgotten. I dedicate this work to you all. 2 Table of Contents Abstract .............................................................................................................. 5 Chapter 1 Introduction ................................................................................... 7 1.1 Thesis overview ..................................................................................... 7 1.2 Chapter overview ................................................................................... 7 1.3 Background ............................................................................................ 8 1.4 Literature review .................................................................................... 9 1.5 Research rationale and aims ................................................................ 32 1.6 Methodological approach ..................................................................... 34 1.7 Summary ............................................................................................. 37 Chapter 2 Study 1 Continuing bonds following stillbirth .......................... 39 2.1 Chapter overview ................................................................................. 39 2.2 Introduction and rationale ..................................................................... 39 2.3 Methodology ........................................................................................ 41 2.4 Findings and discussion ....................................................................... 48 2.5 Strengths and limitations of Study 1 ................................................... 163 2.6 Detailed summary and conclusions .................................................... 164 Chapter 3 Study 2 Continuing bonds and bereavement adaptation ....... 177 3.1 Chapter overview ............................................................................... 177 3.2 Introduction ........................................................................................ 177 3.3 Rationale and research questions ...................................................... 180 3.4 Methodology ...................................................................................... 181 3.5 Results ............................................................................................... 188 3.6 Discussion.......................................................................................... 214 3.7 Strengths and limitations of Study 2 ................................................... 231 3.8 Summary and conclusions ................................................................. 232 Chapter 4 Conclusions and implications.................................................. 236 4.1 Chapter overview ............................................................................... 236 4.2 Project overview ................................................................................. 236 3 4.3 Summary of findings and conclusions ................................................ 237 4.4 Recommendations and implications for care ...................................... 246 4.5 Future research directions .................................................................. 260 4.6 Methodological reflections .................................................................. 263 4.7 Summary of contribution to knowledge ............................................... 272 References ..................................................................................................... 278 Appendices .................................................................................................... 329 Appendix A Contact Letter .......................................................................... 329 Appendix B Ethical Approval Certificate (Study 1) ....................................... 331 Appendix C Information Sheet .................................................................... 332 Appendix D Consent Form .......................................................................... 335 Appendix E Personal Details Sheet ............................................................. 337 Appendix F Interview Schedule ................................................................... 340 Appendix G Debrief Sheet ........................................................................... 341 Appendix H Table Showing Participants’ Details ......................................... 343 Appendix I Ethical Approval Certificate (Study 2) ........................................ 344 Appendix J Continuing Bonds and Coping Questionnaire ........................... 345 Appendix K Breakdown of Data Showing Parents’ Engagement in Continuing Bonds Expressions Over Time ..................................................................... 374 Appendix L Breakdown of Data Showing Parents’ Sharing Behaviours Over Time ............................................................................................................. 376 4 Abstract Continuing bonds theory suggests that bereaved parents can adapt to the loss of their child by sharing and transforming mental representations of the child, allowing them to be integrated into parents’ everyday lives and support systems. Few studies examine continuing bonds following stillbirth, and little is known about the potential mental health benefits of expressing continuing bonds. Most studies focus on parent-baby contact and memory-making activities in the immediate aftermath of the loss. Findings are inconclusive although there is evidence that sharing memories of the baby is related to better maternal mental health. Therefore, this project explored how parents continued bonds with their stillborn baby longer term, and investigated any association between key aspects of the relationship, parents’ perceptions of social support for the relationship, and bereavement adaptation. A mixed methods design was employed. In Study 1, 12 parents were interviewed. Data analysis was informed by grounded theory and the constant comparative method applied. In Study 2, parents (N = 170) completed an online questionnaire examining engagement in continuing bonds expressions over time; characteristics of the relationship and parents’ experience of sharing it; social support, and meaning-making. Measures of anxiety, depression, posttraumatic stress, and posttraumatic growth were also included to quantify bereavement adaptation. Results showed the creative strategies employed by parents to maintain connections with their baby; the affective depth and potentially interactive nature of bonds; and the enduring, pervading influence of the relationship on parents’ ongoing lives. How the relationship was expressed changed over time. Parents appreciated sharing their relationship with their baby with compassionate others. Generally, partners, family members and friends understood
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