Death Before Birth – Stakeholder Workshop 2018

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The wintry weather might not have been on our side, but the Death Before Birth Stakeholder Workshop on the 28th of February 2018 was a successful exchange of perspectives and insights between all the participants.

With over 30 participants, from medical doctors, midwives, and funerary industry professionals, to representatives of regulatory bodies and charities supporting people who have experienced pregnancy loss, as well as people who have themselves lost a pregnancy to miscarriage, termination, or stillbirth, the workshop brought together a variety of perspectives to discuss the complex issue of pregnancy loss.

The workshop began with a panel on experiences, where three women who have had experiences of miscarriage, termination and stillbirth eloquently told their stories, illustrating the multidimensionality and intricacy of each case. They highlighted key issues that concerned them about the process of decision- and choice-making with regards to the disposal of fetal remains and the cremation or burial of stillborn children.

The DBB research team followed with an update of the project’s progress and short introductions to the breakout sessions: one on communication, run by Jeannette Littlemore, and another on decision-making, run by Karolina Kuberska and Meera Burgess.

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The breakout session on communication focused on the metaphors people use to talk about the experience of pregnancy loss – and how looking at these metaphors can give us insights into such experiences. The session on decision-making highlighted possible conflicts of priorities involved in offering bereavement care to people who have experienced pregnancy loss.

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The final panel, “Professional support and policy: Actions for change”, was a discussion by Ruth Bender-Atik of the Miscarriage Association, Ross Jones from Sands, Brendan Day of the Federation of Burial and Cremation Authorities, and Adam Whittaker of the Human Tissue Authority. The panellists offered their reflections on issues raised in the workshop, as well as indicating possible directions for the future of bereavement care pathways following pregnancy loss.

The day provided a good opportunity for us to share our perspectives on this important issue.

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Tweets from the day: #dbbworkshop2018

Project Blog

Thank you for your interest in our project. We will be using this blog to keep you up-to-date with our research, and to reflect on issues relevant to our research. We will also be publishing submissions from people who have been affected by pregnancy loss.

If you would like to contribute your own experience, we would love to hear from you! Please see the Share Your Experiences page for more information.

Please feel free to comment on the posts published here, but do not be concerned if your comment does not appear straight away; all comments are moderated before publication.

Medical Treatment, Miscarriages and Consent – Louise Austin

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Earlier this month, Louise Austin presented a paper arising from research conducted on the Death before Birth project at the Socio-Legal Studies Association’s annual conference at Leeds University. Louise is a PhD candidate in Law at the Centre for Health, Law, and Society and Centre for Ethics in Medicine, University of Bristol, and has provided invaluable support to the project.

The paper, co-written with Sheelagh McGuinness, is provisionally titled ‘Medical Treatment, Miscarriages and Consent’. It explores a legislative gap concerning information provision and consent for disposal of pregnancy remains pre-24 weeks’ gestation and examines how case law could be used to overcome that gap. As Louise explains in her blog post on the SLSA website:

The paper arose out of research conducted as part of the Death Before Birth (DBB) Project, which examined the extent to which Human Tissue Authority (HTA) guidance on disposal of pregnancy remains has been incorporated into hospital policies. The guidance sets out different options for disposing of pregnancy remains and requires that women are informed of all options before their consent to disposal is sought. However, the DBB research revealed a wide variation between Hospital Trusts as to which options were offered, with women who miscarried at home often being excluded from information about disposal even when they had sought medical advice.

You can read her full post here.

Bereavement Midwife Forum – London

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On Friday the 13th of April 2018 Karolina and Sheelagh joined the Bereavement Midwife Forum in St Mary’s Hospital in London. The forum was established by bereavement midwife Jane Scott in 2009; it is organised twice a year and offers an opportunity for bereavement midwives to discuss ways of improving bereavement care following pregnancy loss in England, from solutions to emerging problems to sharing tips and experiences.

 

Karolina presented findings from the report to the Human Tissue Authority on the uptake of the HTA 2015 “Guidance on the disposal of pregnancy remains following pregnancy loss and termination”. She spoke about the evidence collected by the Death before Birth team to support the claim that bereavement care following pregnancy loss is by no means uniform across Trusts within NHS England.

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Karolina focused on issues of particular interest to bereavement midwives with reference to the HTA Guidance recommendations. For instance, when discussing disposal options of pregnancy remains, in addition to offering hospital-arranged burial or cremation, it might be worthwhile to provide a leaflet explaining other options, such as private arrangements, burial outside the cemetery grounds or sensitive incineration. Karolina also talked about practical aspects of funeral arrangements, such as facilitating parental attendance at shared funeral services, explaining costs to parents, and availability of ashes with modern cremation technologies.

You can find a summary of the report here.

And here’s Karolina and Sheelagh in front of Dr John Braxton Hicks’ portrait in the boardroom of Clarence Memorial Wing of St Mary’s Hospital.

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Death Before Birth Stakeholder Workshop

The Death Before Birth project team is organising a one-day event on Wednesday the 28th of February 2018.

We will share some of our initial findings and talk to our partner organisations (the Human Tissue Authority, the Miscarriage Association, Antenatal Results and Choices, Sands) about possible applications of our findings as well as about future directions for policy and practice. The workshop will bring together people who have experienced different kinds of pregnancy losses as well as those who support them professionally in different contexts, such as bereavement midwives, funerary industry professionals, and support workers. Among other things, we hope to talk about challenges of losing pregnancy as well as providing care during and after such an event and about the principles of good communication.

We are very much looking forward to this event!

Would you like to join us? There are still a few places left! Find out more and register here: https://goo.gl/TqHThi

Shifting States Anthropology Conference, 11-15 December 2017

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Shifting States – Tripoli, 2011, Luis Cruz Azaceta (

Last week, our team member Karolina Kuberska attended the annual Association of Social Anthropologists of the UK and Commonwealth (ASA) conference. This year, the ASA joined forces with its equivalent organisations in Australia (AAS) and New Zealand (ASAANZ) and held the event at the University of Adelaide, Australia.

The theme of the conference focused on recent anthropological theorising on the state. Over 400 participants discussed various ways in which the state is engaged in people’s everyday lives and engages with peoples as stakeholders. Topics of panels ranged from eating to health, from resistance to victimhood, from sustainability to mining rights, among others. Karolina presented a paper in a panel ran by Dr Susan Hemer (University of Adelaide) and Dr Anthony Heathcote (Monash University, Melbourne) entitled “Death and grief: changing states of being and continuing relationships” that considered the end of life, and the changing states of being that entails.

Karolina presented a paper entitled “Parenthood following miscarriage: the kinship consequences of death before birth” that examined the significance of the lack of legally required miscarriage certificates for the sense of parenthood among people who lost pregnancies prior to week 24 of gestation in England. The paper focused on the discrepancy between legal requirements of registering pregnancy loss (only stillbirth requires legal certificate that includes names of parents) and messages sent by pregnancy loss support organisations and hospitals that consider all losses as potentially significant. You can read the abstract below.

The presentation was well received and Karolina was asked many interesting follow-up questions.

Adelaide is a beautiful city, and there are koalas living in the nearby Cleland Wildlife park. (Follow the links to see videos of a koala eating eucalyptus, or a kangaroo jumping.)

You can read the abstract below:

The sense of parenthood following a miscarriage is questioned by death and nourished by grief. The ambivalence of this kind of parenthood has been addressed by various researchers who examined the difficulties of displaying parenthood to others (Murphy & Thomas 2013), conflicting understandings of the loss (Komaromy et al. 2007; Malacrida 1999), or the paradoxical nature of materiality and immateriality of memories (Layne 2003), among others. Miscarriages, unlike stillbirths, do not require the issuing of legal certificates in England, which calls into question the formal parental status of those who have lost a pregnancy. Simultaneously, care and support following pregnancy loss is structured around recognising the feelings of bereaved parents. This paper aims to explore the ambiguities of parenthood following a miscarriage in England, paying particular attention to the impact of the lack of legal recognition on the sense of parenthood. An analysis of interviews with people who experienced miscarriage and those who cared for them, as well as an analysis of resources directed at these groups (leaflets, books, support guidelines, etc.) help to illuminate the challenges of navigating the precarious sense of parenthood that is deeply anchored in the grief caused by the absence of a child and the unfulfillable dreams that may result from a pregnancy loss. By exploring the implications of lack of legal requirements for miscarriage certificates, this paper uses understandings of kinship as legal and social categories to examine the paradox of parenthood rooted in pregnancy loss.