Next Steps for the Project

As Baby Loss Awareness Week draws to a close, it seems an appropriate time to reflect on what’s next for the Death Before Birth project team.

Our linguists are currently focusing on analysing the transcripts of 16 interviews we conducted with professionals who provide support to those who have experienced pregnancy loss. The majority of those we interviewed work for one of our partner organisations, with participants from the Miscarriage Association, SANDS, and Antenatal Results and Choices. This analysis has enabled the linguists to build and trial an annotation scheme which they will also use when analysing the interviews with the bereaved.

We are also currently conducting interviews with women who have experienced miscarriage, termination for fetal anomaly, or stillbirth. These interviews will enable us to investigate the experiences of the bereaved, the care they received, and their decision-making processes surrounding the loss. We will also identify differences in the language used by caregivers and the bereaved, as this can point to different understandings and conceptions of the experience of pregnancy/baby loss in the two groups.

We’re looking forward to talking about our research at a number of upcoming conferences. Jeannette and Sarah are sharing some of the linguistic findings at the British Sociological Association’s ‘Death and Time’ symposium in London in December, while Karolina will be attending Shifting States, a major international anthropology conference held at the University of Adelaide. We have also submitted an abstract for the 2018 Researching and Applying Metaphor Conference at Hong Kong Polytechnic University.

Project Findings So Far – Linguistic Analysis

Our report to the HTA identified a number of inconsistencies in the care offered to women and their families following miscarriage. However, as well as analysing the hospital protocols and patient information leaflets for their content, we also conducted a preliminary linguistic analysis on the hospital patient information leaflets regarding pregnancy loss. Here again, there was some inconsistency, with some examples of careful, sensitive language use and others where we identified improvements that could be made. Some examples of good practice included:

  • Good management of expectations (e.g. ‘We cannot always provide a reason for the death…’)
  • Sensitive, empathic use of language which attempted to take into account the emotions the bereaved may be feeling (e.g. ‘This may seem daunting, but…’)
  • Clear explanation of the options on offer
  • Non-forceful suggestions of things the bereaved may wish to do to mark the loss.

However, there were also some areas where improvements could be made. These included:

  • Vague language, where it was not clear what particular options entailed (e.g. ‘Various forms of memorial are available…’)
  • Language that normalised a particular option, thus implicitly encouraging others to do the same (e.g. ‘Most women… choose to let the hospital deal with the disposal’)
  • Overly dramatic language (e.g. ‘Making funeral arrangements is a deeply upsetting and stressful event’)
  • Overly religious language, with a strong focus on Christianity
  • Language which backgrounded the partners and families of the patient (e.g. ‘Most women (and their partners)…’)

The loss of a pregnancy may be felt as a form of bereavement, one that usually involves complex emotions that are difficult to express. Because of this, the project includes a component of linguistic analysis, paying careful attention not just to what the bereaved and those who support them do, but how they express themselves. We are particularly interested in figurative language such as metaphor, as this is a commonly-used resource for expressing difficult, painful and complex concepts. The bulk of our linguistic analysis is still underway; we’re currently working on a close analysis of our interviews with women who have experienced pregnancy loss, and those who are there to support them.  However, we did undertake a small pilot study, the results of which we presented at a conference in Denmark in May. You can read about some of our findings here.

 

Project Findings So Far – the HTA Report

It’s an important day for us here on the Death before Birth project, as it marks the publication of our report to the Human Tissue Authority (HTA) on the disposal of pregnancy remains of less than 24 weeks’ gestational age. The report was written by Sheelagh McGuinness and Karolina Kuberska from the project team, with research assistance from Louise Austin, and it marks the completion of the first stage of our project.

In 2015, the HTA published its Guidance on the disposal of pregnancy remains following pregnancy loss or termination. In the first stage of our project, we wanted to investigate the extent to which this guidance had been incorporated into hospital policies for the management and disposal of pregnancy remains. To do this, we collected a sample of hospital documentation from a number of trusts within NHS England, and analysed them to see how far they reflected the expectations set out in the Guidance. We also interviewed bereavement care providers in hospitals, and professionals in the funerary industry, to see how far they were aware of the Guidance and how much of an impact it had had on their practice.

We found that on the whole, women were being offered some choice about disposal, but that there was a lot of variation between different NHS Trusts. Women were not always offered all options, or were encouraged to choose a particular one. Information and support given to women following pregnancy loss was also inconsistent, with some hospitals providing more comprehensive information than others. The hospital policies on disposal were often unclear or internally inconsistent, and again, there was variation between different Trusts in this regard. We found that there was particular confusion surrounding ‘sensitive incineration’, what it involved, and whether it is a legitimate option for disposal.

In the light of this research, we made a key recommendation to the HTA:

There is confusion about what sensitive incineration means and whether it is a legitimate option for disposal of pregnancy remains. The Human Tissue Authority could provide a statement which clarifies the legitimacy of this disposal method.

We also made two general recommendations.

  • That there be a move towards a standardised approach to provision of information about options for disposal of pregnancy remains. This could be achieved with specific patient information leaflets on disposal and standardised consent forms… Such an approach could help ensure that women are being provided with a range of options for disposal of pregnancy remains.

  • That consideration be given as to whether disposal of remains of pregnancy be integrated into miscarriage care pathway, potentially within the meaning of treatment and as such discussed as part of the consent process.

You can read a summary of our findings in the policy document here, or download a full copy of the report here.