Death Before Birth: Understanding, informing and supporting the choices made by people who have experienced miscarriage, termination, and stillbirth

We propose a socio-legal, linguistic study of how people in England who have experienced miscarriage, termination, and stillbirth reach decisions concerning the disposal of the remains of pregnancy, how their perceptions of the law impact on their decision-making, and how they communicate their experiences and choices to those who are there to support them. The project engages with an important and large-scale social issue: it is estimated that approximately 1 in 5 known pregnancies end in miscarriage, 1 in every 200 births is a stillbirth, and 2,000 terminations for reasons of fetal anomaly are performed in the UK each year. The study seeks to replace the social and legal uncertainty surrounding the question of what to do with the remains of pregnancy by engaging stakeholders with a view to producing evidence-led policy and practice.

English law is not straightforward when it comes to definitions about the remains of pregnancy: in legal terms, the remains occupy a mid-way category somewhere between person and human tissue. Not surprisingly, those affected often lack knowledge of the legal options for the disposal of the remains. The disposal of the remains of pregnancy has been the subject of increased levels of media controversy and public scrutiny in the last 12 months. In the wake of these scandals, and in recognition of the need for national guidance in this area, the Human Tissue Authority (HTA) recently published guidelines for the disposal of the remains of pregnancy (25 March 2015). A key aspect of our investigation will assess how these guidelines are interpreted in practice by professionals (such as midwives and funeral directors) and how this shapes the way in which options are presented to the bereaved. We will also examine whether the guidelines take sufficient account of the views, experiences and needs of the bereaved. Our findings will inform the HTA's revision of the guidelines, and in doing so, we aim to contribute to improved care pathways for those experiencing pregnancy loss.

The end of a pregnancy may be felt as a form of bereavement, one that usually involves complex emotions that are difficult to articulate. Linguistics research has demonstrated that metaphor is prevalent in the language used when people are communicating about emotionally charged, life-changing experiences. Furthermore, when people face bereavement through miscarriage, termination, and stillbirth, it can be difficult to organise a 'conventional' funeral, so people create their own, drawing on a selection of metaphors. This project will accordingly pay careful attention not just to what the bereaved and those who support them say, but how they express themselves through words and actions. In particular, it will explore how support workers and their clients reach for metaphor as a way of exploring options and expressing the inexpressible. By interviewing the bereaved and their support workers, we aim to provide guidance to agencies like Miscarriage Association (MA), the Stillbirth and Neonatal Death Charity (SANDS), and the Antenatal Results and Choices charity (ARC) in order to help them improve their communications with their clients. We will work together to produce material for their websites and will provide briefing documents for training sessions for staff. Beyond these immediate aims, we hope that by working directly with these agencies as our partners, our research results will contribute to the raising of public awareness about the options for the disposal of the remains of pregnancy, and enable productive debate about, and improvement of, those options.

Our research will have social impact through informing and improving (i) government policy and (ii) care pathways of people who have experienced miscarriage, termination or stillbirth ('the bereaved').

We will work with five different user groups in order to ensure impact:

(1) The Human Tissue Authority (HTA)
The HTA, who are a partner in this research, have statutory responsibility for the creation of national guidance governing disposal of human materials. We will work with the HTA in order to ensure that our findings inform revisions to their recently published guidance on disposal of foetal remains. Our research can assist the HTA by assessing the impact of guidance across a range of user groups and in a range of contexts.

(2) Support Agencies
Support Agencies strive to improve the care provided to bereaved individuals in a range of contexts. Three major UK support agencies (the Miscarriage Association (MA), the Stillbirth and Neonatal Death Charity (SANDS), and the Antenatal Results and Choices charity (ARC)) are partners on this project. By working with them our research findings will inform best practice in supporting the bereaved. Support Agency staff and volunteers play a key role in conveying information to bereaved parents. Collaboratively with these organisations we will work to produce guidance (i) to ensure that bereaved parents are aware of the choices available to them under the new HTA Guidance (e.g. to bring the baby's body home); (ii) create briefing documents on the different ways in which bereaved parents use metaphor to understand, come to terms with and communicate their experiences, and outline ways in which this information can be used by counselors. Our research will also assist these organisations in their advocacy for improved care for the bereaved.

(3) Health Care Professionals
A representative from the Local Supervising Authority Midwifery Forum (LSAMF) sits on our stakeholder group. Working with the LSAMF ensures direct engagement with those individuals (who are themselves practicing midwives) with statutory responsibility for supervision of midwifery activities and practice in NHS Regions across England. We will produce guidance to facilitate best practice for health care professionals. Often health care professionals are unsure of the options available to bereaved parents as the translation of guidelines to clinical practice is an area fraught with difficulty. We will work directly with health professional organisations to address this difficulty.

(4) Funeral Directors/ Crematoria Managers
A representative from the Federation of Burial and Cremation Authorities (FBCA) sits on our stakeholder group. Working with the FBCA means we can work with those directly tasked with arranging funerals or other death rituals for bereaved parents. This engagement is especially important as these individuals work outside of the health care context and so often don't have access to support and guidance on implementation of health related regulations. We will produce guidance for funeral directors and crematoria managers about the funeral and other death ritual options they can offer to the bereaved.

(5) The Bereaved
By directly influencing HTA Guideline Revisions we will help to change the future implementation and understanding of the guidance which directly shapes the care pathways for the bereaved. In keeping with recent trends towards evidence-based health policy it is particularly important that there be greater clarity and information about the burdens that the law imposes on professionals and bereaved parents. Our research impacts upon professional practice and will influence future government policy in order to improve the choices offered to bereaved parents. Our findings will also contribute to the knowledge base of our research partners and thus lead directly to improvement of care pathways for bereaved women and their families.