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

Lead Research Organisation: University of Birmingham
Department Name: English Drama American and Canadian Stu

Abstract

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.

Planned Impact

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.

Publications

10 25 50
 
Description 1. Generation of new knowledge

a. Law and policy which shape care for the bereaved
Our research revealed that there was a critical lack of informed practice for the bereaved. In particular we have found that:

• there is inconsistency in the range of information and support being offered
• people are offered some but not all choices with regard to disposal of remains
• the language in the patient information leaflets is often euphemistic and vague
• many trusts offer fewer choices than recommended in Guidance
• often no information was provided for disposal options not available locally.
• some Hospital Trusts do not offer the full range of disposal/memorialisation options because the Guidance produced by the Human Tissue Authority (2015) is unclear
• written and verbal communication of the choices available to bereaved parents is sometimes poor in terms of both content and delivery.
• many trusts that offer fewer choices than those recommended in the Guidance interpret their policies as being compliant with the Guidance


b. social and cultural knowledge about pregnancy loss:
Our findings revealed several insights into the experience of pregnancy loss and associated practices of memorialisation:
• parents' ritual and memorialisation practices underline the range of bereavement experiences but also the needs of the bereaved to have their parenthood acknowledged formally or informally;
• funeral practices on- and off- hospital sites can provide semi-formal acknowledgement of birth, life and loss
• women's lack of agency re. their bodies within medical contexts especially following understatement of pain by clinical staff
• hierarchical understandings of baby/pregnancy loss play a key role in making some people's experiences socially invisible and difficult to talk about
• Following a cremation of a stillborn infant, the ashes are often of great importance to the parents. Even ashes that only contain wood from the coffin can acquire emotional importance through association.


c. Ways in which people who have experienced pregnancy loss use metaphor to conceptualise their experiences
• The experience of pregnancy loss shapes the ways in which people view the world through metaphor:

• Parents exhibit a wide range of attitudes towards the foetal remains following pregnancy loss, with some viewing them as a 'baby' and others viewing them as 'a pregnancy'.
• These views which reflect different kinds of metaphorical thinking, do not map neatly onto the gestational period (so legal and care-based assumptions should not be made about the levels and types of grief experienced by people at these different stages) and not all of them are recognised in legislative procedures regarding memorialisation, registration and certification.
• People think about the baby's body almost in terms of a living being; this has implications for issues such as the registration of the stillbirth
• People need to continue to 'look after' the baby and do this by finding other outlets, such as charity work
• Parents who have experienced pregnancy loss sometimes develop paradoxical construals of time in which it is metaphorically displaced, expanded, or experienced in other non-conventional ways, and this affects their decision-making processes
• Parents who have experienced pregnancy loss often use metaphor to report feelings of displacement and disorientation, a sense of a 'divided self' or 'mind-body separation' and a lack of 'ownership' over their thought processes
• For some, the metaphor of the 'divided self' becomes more marked and the body is given agency which allows for it to be blamed for what has happened

2. New research question
How can the return to work experience be improved for those who have experienced pregnancy loss or stillbirth?
We encountered very mixed accounts of how employers reacted to pregnancy loss and stillbirth. We are pursuing a research project to investigate this issue at the University of Birmingham and University Of Bristol. Our funding application for this research was not successful so replaced it with work on the process of registration. This has led to the development of training materials for registrars on how best to communicate with parents who are registering stillbirths.

3. New ways of working and new skills developed
? We combined socio-legal methodologies with analytic techniques from metaphor studies and cultural studies to shape our methods: a unique multi- and inter-disciplinary investigative and analytic approach.
? All 6 members of the team received expert training in working with vulnerable human beings (from SANDS) and in media presentation (via ESRC)
? Fuller (former PI) and McGuinness (Co-I) gained their first experiences of working with vulnerable research subjects; Kuberska (PDF) and McGuinness (Co-I) were trained by Fuller to undertake focus groups; Kuberska developed skills in questionnaire design.
? Kuberska and Turner (PDFs) developed editing skills, presentation skills for public engagement work; report writing for impact activity; Burgess (RA/Admin) was trained in metaphor analysis by Littlemore (Co-I; now PI). Both PDFs moved on to full-time employment in the academy.
• McGuinness and Littlemore developed skills in working with professionals at support organisations and in healthcare settings
Exploitation Route Our research found significant inconsistency in the care offered to those who experience pregnancy loss and have used our findings to address this. Our findings have informed:

1. Government policy -
The HTA has statutory responsibility for the creation of national guidance governing removal, storage, and use of human material. In 2015, at the request of the Chief Medical Officer, the team produced guidance on disposal of remains of pregnancy. We presented our findings to the Human Tissue Authority in order to ensure that our findings will inform any revisions to their guidance on disposal of pregnancy remains.
We were also invited to discuss our findings with the Department of Health and Social Care 'Pregnancy Loss Review' who are considering how practice regarding pregnancy losses that take place before gestation of 24 weeks could be improved.

2. Improving Care for Bereaved Individuals -
We have worked closely with our other partners, The Stillbirth and Neonatal Death Charity (SANDS), Miscarriage Association (MA), Antenatal Results and Choices (ARC) throughout this project. We continue to work with them to develop guidance and training materials to help healthcare professionals we will also have the opportunity to feed into to the National Bereavement Care Pathway.
1. Improved the National Bereavement Care Pathway (NBCP)
Our evidence-based recommendations on how to communicate in a clear, non-euphemistic, more encompassing manner have changed the communication approach of the NBCP. This included using clearer and more nuanced explanations of how to communicate sensitively and effectively with the bereaved, presenting the different options available in a more balanced manner, and making fewer assumptions about how people feel following a diagnosis of foetal anomaly. As the UK lead on the National Bereavement Care Pathway states: "The recommendations set out in the Report brought our attention to the importance of sensitivity, clear communication with parents, consent and parental choice, and our need to focus on the language that we use in patient information leaflets around cremation. These insights have all had a beneficial impact on the Pathway."
The NBCP, launched in October 2017, was produced by the Stillbirth and neonatal death charity (Sands), the Miscarriage Association (MA), Antenatal Results and Choices (ARC) and other pregnancy loss charities in collaboration with the Department of Health and Social Care (DHSC) and the All Party Parliamentary Group (APPG) on Baby Loss. The NBCP was designed to improve bereavement care, improve communication, and reduce the variability in bereavement care, for families suffering the loss of a baby through miscarriage, termination for foetal anomaly, stillbirth, neonatal death or sudden and unexpected infant death up to 12 months. Since its launch, the NBCP has enjoyed an impressive implementation across 51 hospitals in England, where it has been systematically employed by healthcare professionals working with families that have experienced pregnancy loss

3. Professional practice -
Reference to our findings in paper on Surgical Management of Miscarriage and Removal of Persistent Placental or Foetal Remains (Consent Advice No. 10 - Joint with AEPU) published by the Royal College of Obstetricians and Gynaecologists.
Registration of stillbirth: our findings evidenced mixed experiences of the registration of stillbirth. As a result of our findings, new training packages were developed for (a) midwives and (b) registrars, to help them provide better support for, and communication with, families who have experienced pregnancy loss.
We co-produced two ilearning modules with the Royal College of Midwifery One focuses on ways of communicating choice about what to do with the baby's body (and/or the pregnancy remains) and one focuses on ways of improving communication with parents when they are registering their baby's death, helping midwives to explain and facilitate this process. These modules are used by midwives for the purposes of Continuing Professional Development,(4000+ users). The modules draw attention to the conflicting identities that people sometimes develop following pregnancy loss, the different ways in which people who have experienced pregnancy loss construe their experience through metaphor, their changing metaphorical relationships to time, and the implications that all of these have for the care they require
We co-produced an online training video with the GRO and Sands for registrars on how to manage stillbirth registration and certification processes and how best to communicate with parents to promote best practice in this area. Registrars are now better equipped to provide support for, and to communicate more effectively with, bereaved parents.

This arose as a result of a meeting with the Department and Health and Social Care Pregnancy Loss Review in August 2017 at which we were invited to present our findings. We discussed the finding that participants reported poor levels of communication around the process of registration of the death and ways of overcoming this problem. For example, some participants were not made aware of the fact that the certificate would be a certificate of 'stillbirth' until they actually received the certificate and many found this wording distressing, reporting that they had 'given birth', not 'stillbirth' .
Sectors Healthcare,Government, Democracy and Justice

URL https://deathbeforebirthproject.org/research/htareport2017/
 
Description Results from our research into the extent to which NHS Trusts in England had taken up the Human Tissue Authority's 'Guidance on the Disposal of Pregnancy Remains (less than 24 weeks' gestational stage)' (published in March 2015) contributed to the thinking and design of the National Care Bereavement Pathway championed by Sands and publicly launched in October 2017. Marc Harder (on behalf of Sands) was given a draft version of our report in advance of its final publication. We then remained in close contact with March Harder and communicated summaries of our subsequent findings to him regarding the experience of pregnancy loss, as reported by our participants and their reflections on communication with healthcare professionals. Our findings, which highlighted the inconsistency in approach from one Trust to another in disposal of pregnancy remains, the importance of sensitivity, clear communication with parents, consent and parental choice, and the need to focus on the language that is use in patient information leaflets around cremation) are now fully incorporated in the NBCP documentation and guidance which provides specific instructions to address these issues. We have worked with the Royal College of Midwifery to develop CPD materials for midwives on how to support parents through pregnancy loss, and how to help them through the registration process. In collaboration with the Stillbirth and Neonatal Death Charity and the National Register Office, have developed materials for registrars to help them support people through the registration process. We have published two articles in CPD journals for funeral directors on how to help people who have experienced pregnancy loss to organised a funeral. We are working with the National Association of Cremation and Funeral Authorities to develop training materials for crematorium technicians on the importance of maintain ashes following cremation. In addition, the research impacted upon other healthcare professionals and carers through CPD events. Bereavement midwives and other carers have learned about and reflected on our findings at two Bereavement midwives forums (May 2017, June 2019), a workshop for healthcare and support professionals (February 2018) and at the joint national conference organised by Sands and Bliss, 'Transforming Loss' (October 2019), where we were invited to deliver a plenary lecture. The feedback from participants at and organisers of these events contains numerous references to immediate planned changes in practice. To date, our research has: Contributed to Government policy on the care provided for woman and their families who experience pregnancy loss prior to 24-weeks gestation, in collaboration with the Department of Health and Social Care; Contributed to the Guidance provided by the Royal College of Obstetricians and Gynaecologists and the Royal College of Nursing on the management of pregnancy remains; Helped health care professionals to improve the care offered to parents who are undergoing the experience of pregnancy loss by providing a wide range of CPD materials; Improved the experiences of parents who have experienced pregnancy loss by contributing to the work carried out by the organisations that support them; helped funeral directors to work with parents organise appropriate funerals for stillborn children; Worked with Sands and the General Register Office to improve the service offered by Registrars by starting to plan the creation and delivery of a training package for them, focusing on how best to facilitate the registration of a stillbirth and/or information packages for the bereaved on what to expect when registering a stillbirth; Provided direct support to parents who have experienced pregnancy loss and those who support them by delivering workshops at events attended mainly by the bereaved but also by other members of the public. Helped to break the silence surrounding pregnancy loss by talking and writing about our work in a range of public spaces.
Sector Healthcare
Impact Types Societal,Policy & public services

 
Description Article on supporting funerals following miscarriage or stillbirth produced for funeral directors' magazine: SAIF Insights.
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact This magazine is read by funeral directors across the UK and our article contains insights into the needs of people who are organising a burial or a cremation for a miscarried or stillborn baby.
URL https://saifinsight.co.uk/supporting-funerals-following-miscarriage-or-stillbirth/
 
Description Article published in 'Resurgam', the magazine of the Federation of Burial and Cremation Authorities. 'Arranging a Funeral Following a Pregnancy Loss'
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact This article will be read by funeral directors and people working in the funeral industry across the UK. It should inform practice and it draws together findings from parents' experiences of organising a funeral in these conditions.
 
Guideline Title Managing the Disposal of Pregnancy Remains: RCN Guidance for Nursing and Midwifery Practice
Description Citation in clinical guidelines from the Royal College of Nursing on Managing the Disposal of Pregnancy Remains
Geographic Reach National 
Policy Influence Type Citation in clinical guidelines
 
Description Keynote talk delivered at the SANDS 'Transforming Loss' conference attended by healthcare practitioners
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Our keynote speech at the Transforming Loss conference was addressed to approximately 100 midwives and other healthcare practitioners. In it, we discussed our findings on what constitutes effective communication with the bereaved following pregnancy loss and the importance of making all choices known to the bereaved regarding funeral, cremations and incineration.
URL https://www5.shocklogic.com/client_data/pp/uploads/2019/sandseng2019/TL%20Birmingham%20programme%202...
 
Description NBCP
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact We have had a strong acknowledgement from the Director of the National Bereavement Care Pathways, Marc Harder, of the contribution that our research findings has made to the development of the pathways.
URL https://nbcpathway.org.uk/
 
Guideline Title Reference to our findings in paper on Surgical Management of Miscarriage and Removal of Persistent Placental or Foetal Remains (Consent Advice No. 10 - Joint with AEPU) published by the Royal College of Obstetricians and Gynaecologists. This paper provides advice for clinicians in obtaining consent of women undergoing surgical evacuation of the uterus for early pregnancy loss. The paper says: "The Death before Birth proje
Description Project recommendations taken up by the Royal College of Obstetricians and Gynaecologists
Geographic Reach National 
Policy Influence Type Citation in clinical guidelines
 
Description Training video prepared for healthcare practitioners on the registration of stillborn infants
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact We have produced a video in collaboration with the Stillbirth and Neonatal Death Charity SANDS, which will be used to train healthcare professionals who are supporting bereaved parents through the process of registering their stillborn baby. The video will appear on the Sands website.
URL https://www.sands.org.uk/
 
Description Training video prepared for registrars on how to optimize comunication with parents of stillborn babies
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact Registrars now have bespoke training on how best to communicate with bereaved parents of stillborn children who are registering the stillbirth.
 
Description i-learn module prepared for Royal College of Midwives on the disposal of pregnancy remains
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact This module is available to midwives across the UK and will inform practice..
URL https://www.ilearn.rcm.org.uk/
 
Description i-learn module produced for Royal College of Midwives on supporting parents through stillbirth
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
Impact This module forms part of the CPD training for midwives across the UK. It will help them improve the support and communication they provide when preparing people for the registration of a stillborn child.
URL https://www.ilearn.rcm.org.uk/
 
Description ESRC IAA
Amount £2,020 (GBP)
Organisation University of Birmingham 
Sector Academic/University
Country United Kingdom
Start 02/2018 
End 03/2018
 
Description RCM 
Organisation Royal College of Midwives
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution We have developed CPD materials to be disseminated by the Royal College of Midwifery to help midwives support people through the experience of pregnancy loss.
Collaborator Contribution We have developed CPD materials for midwives on how to support people through pregnancy loss. These materials were edited by the RCM and will appear on their CPD portal.
Impact CPD materials for midwives on how to support people through pregnancy loss.
Start Year 2018
 
Description SANDS 
Organisation Stillbirth and Neonatal Death Charity
Country United Kingdom 
Sector Charity/Non Profit 
PI Contribution We have worked together with SANDS to produce CPD materials to help registrars support people through pregnancy loss.
Collaborator Contribution Sands helped us to design our project and contributed to the design and development of the materials.
Impact Training materials for registrars.
Start Year 2016
 
Description Awareness-raising event at New Street Station, Birmingham 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact We had a stand at the 'Research at the Heart of Brum' event in New Street Station, Birmingham. We engaged in a number of conversations with members of the general public about our research findings. Many, but not all, of the people we spoke to had had some experience of pregnancy loss. We were surprised and pleased by the large number of men who stopped to talk to us.
Year(s) Of Engagement Activity 2018
 
Description Guest editing of a series on pregnancy loss in the Nursing Clio blog series 
Form Of Engagement Activity Engagement focused website, blog or social media channel
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact DBB guest-edited a series of the Nursing Clio blog series focusing on the experience of pregnancy loss.

The purpose was to raise awareness of the experience of pregnancy loss and to share academic research and personal accounts with the general public as a means to break the silence and to challenge taboos related to this topic.

The series was called 'Exploring Pregnancy Loss: The Nursing Clio Series'. It appeared in October 2018 to coincide with pregnancy loss awareness week. There were eight articles in the series written by academic and non-academic authors from the US, the UK and The Netherlands. DBB Research Fellows, Karolina Kuberska and Sarah Turner wrote the introduction and edited the series.
https://nursingclio.org/2018/10/02/exploring-pregnancy-loss-a-nursing-clio-series/
Nursing Clio has 5,199 followers on Twitter.
Year(s) Of Engagement Activity 2018
URL https://nursingclio.org/?s=pregnancy+loss
 
Description Invitation to present our findings to the Department of Health and Social Care 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Policymakers/politicians
Results and Impact The team provided input into the pregnancy loss review that was conducted by the Department of Social Care in autumn 2018. We were invited to present our findings to the Department of Health and Social Care, and our recommendations will be incorporated into the review.
Year(s) Of Engagement Activity 2018
URL https://deathbeforebirthproject.org/research/
 
Description Planning meeting with registrars, Sands representatives and representatives from the DHSC to discuss training for registrars 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact DBB organised a meeting attended by 10 people (registrars, Sands representatives and representatives from the DHSC) to share good practice and work towards creating better guidance and training materials. The meeting aimed to address the current lacuna in training and support for registrars and individuals in contact centres on providing appropriate support to bereaved parents during the stillbirth registration process. Attendees shared and discussed experiences of good practice and the challenges faced in supporting bereaved parents. The outcome of the meeting was the design of a work plan for the creation of appropriate resources.
Year(s) Of Engagement Activity 2019
 
Description Presentation of project findings at Human Tissue Authority Away-Day 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact We presented our findings on the choices offered concerning the disposal of pregnancy remains and the communication of these choices in order to inform the practice of HTA inspectors and other staff members. There was extensive discussion and a potential outcome is that we will work with the HTA to produce a new sample leaflet presenting the choices more fully and in a clearer manner.
Year(s) Of Engagement Activity 2019
 
Description Researcher on loan 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Sheelagh McGuinness participated in a 'researcher on loan' event at Bristol Library as part of a European Researchers Night. She talked to members of the public about our findings regarding people's understanding of the Law surrounding pregnancy loss.
Year(s) Of Engagement Activity 2018
 
Description Talk delivered at Hay Festival 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact Jeannette Littlemore and Sarah Turner talked about the ways in which people who have experienced pregnancy loss, and those who support them, use language to make sense of and communicate their feelings about their loss. Feedback from the audience revealed that people found the talk informative; some members of the audience acquired new information and people who had experienced pregnancy loss reported that it had been found that it had been beneficial to hear stories like their own, which made them feel less alone.
Year(s) Of Engagement Activity 2018
URL https://www.hayfestival.com/p-13873-jeannette-littlemore-and-sarah-turner.aspx
 
Description Talk delivered to the Bereavement Midwife Forum 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Karolina Kuberska delivered a talk to the Bereavement Midwife Forum about variation in the consistency of care following baby loss. In the feedback, the midwives reported that they had learned new things from the talk regarding regional variation in the care received and the different ways in which the HTA recommendations are interpreted..
Year(s) Of Engagement Activity 2018
 
Description Talk on pregnancy loss at Selly Oak Methodist church 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Public/other audiences
Results and Impact Jeannette Littlemore and Sarah Turner delivered an interactive talk on the language of pregnancy loss at Selly Oak Methodist Church, Birmingham. The talk was attended by a number of people who have experienced pregnancy loss and those who support them, as well as other members of the congregation.
Year(s) Of Engagement Activity 2018
 
Description The Conversation piece on communication following pregnancy loss 
Form Of Engagement Activity A press release, press conference or response to a media enquiry/interview
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Public/other audiences
Results and Impact DBB produced an article in The Conversation designed to raise awareness of the lack of communication that is often reported by people who have experienced pregnancy loss. The aim of the piece was to help break the silence around this subject. The piece was reproduced in The Independent (UK), Medicalxpress (website) and Channel News Asia.
Year(s) Of Engagement Activity 2017,2018
URL https://theconversation.com/pregnancy-loss-how-to-find-the-right-words-to-talk-about-it-100915
 
Description Workshop for new and original stakeholders 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact 35 professional practitioners (clinicians, funerary professionals, midwives, representatives of key agencies supporting pregnancy loss and stillbirth) and bereaved parents attended an all-day workshop examining the preliminary findings of our research. Presentations and hands-on activities using case studies derived from our primary research material sparked thoughtful and engaged conversations about decision-making and communication about the options for the disposal of pregnancy remains and the burial/cremation of stillborn babies. Feedback from the day reported new levels of awareness about the use of symbolic language in communication (specifically metaphor) and participants also reported that the sequencing of information about choices/options should be reconsidered by clinicians, midwives etc. New stakeholders such as the Royal College of Nursing were represented at the day and have asked about the possibility of half-day workshops for nursing staff and a report on our research directly addressed to a) RCN and b) RCM. [The snowy weather did reduce the number of participants which was originally 50]
Year(s) Of Engagement Activity 2018
URL https://deathbeforebirthproject.org/blog/
 
Description Workshop on communication following pregnancy loss at the 'Highs and Lows of Pregnancy' event, The Storyhouse, Chester 
Form Of Engagement Activity Participation in an activity, workshop or similar
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact Jeannette Littlemore, Sheelagh McGuinness and Sarah Turner delivered a workshop on people's understanding of the Law around pregnancy loss and issues surrounding communication.
Year(s) Of Engagement Activity 2018
URL https://www.storyhouse.com/blink-festival