Exploring the Choices that Bereaved Families Make | The Death Before Birth Project for the #ItStillTakesAVillageBlogSeries

Welcome to the latest addition to the It Still Takes a Village – Working in Baby Loss Interview Series where we take a closer look at those who dedicate their day to day to preventing baby loss and supporting those affected. You can read more interviews, here.

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We’ve mentioned it already in this blog series – but research is so important to inform and bring about improvements in care and practice. One project that I have been following is the ‘Death Before Birth’ project which is exploring the choices made by families experiences miscarriage, termination and stillbirth. The entire project team (below) has collaborated and to this spotlight, and they share with us more about the project and the team involved, and how they hope it will help to improve care. 

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So, to start us off, please can you let us know a little about your current role?

Death Before Birth is a two-year (2016-2018) interdisciplinary research project that examines how people in England who have experienced miscarriage, stillbirth or have terminated a pregnancy following a diagnosis of foetal anomaly reach decisions concerning the disposal of the remains of pregnancy or funeral arrangements for the baby, how their perceptions of the law impact on their decision-making, and how they communicate their experiences and choices to those there who support them.

The research project is carried out at the University of Birmingham and the University of Bristol and there are 6 people in our research team: Danielle Fuller (cultural studies specialist), Jeannette Littlemore (linguist), Sheelagh McGuinness (lawyer), Karolina Kuberska (medical anthropologist), Sarah Turner (linguist), and Meera Burgess (linguist and administrative support). Each of us brings something different to the table, which enables us to work so well together.

The idea behind this project was to look into different aspects of various experiences of pregnancy loss with a particular focus on what the bereaved choose to do with their babies. First, we looked at existing official guidance documents on that subject. We also analysed policies and guidelines of over 50 NHS England Trusts regarding supporting people experiencing pregnancy loss, and at the leaflets that they provide for the bereaved. Later, we interviewed bereavement midwives and funerary industry representatives (funeral directors and bereavement services managers) about their experiences of offering support to people who have lost a pregnancy. Findings from these stages of our work are included in the report for the Human Tissue Authority.

The second half of the project involved interviewing people who had had experiences of pregnancy loss or who were working for charities that support people who have experienced pregnancy loss. First, we spoke to those who work or volunteer for perinatal loss charities such as Miscarriage Association (MA), Antenatal Results and Choices (ARC) and the Stillbirth and Neonatal Death Charity (SANDS). We also spoke to people who have had losses themselves. Finally, we ran a few small group interviews with the bereaved, where we discussed their experiences and their opinions about the registration and certification of stillborn babies. In this stage of the project we are looking not only at what people say about the experience of pregnancy loss, but also at the language they use to describe their experiences.

The final stage of our research is translating our findings into various publications – we have ambitious plans for the next couple of years – you can follow our website or twitter for updates!

 

“We are also keen to use our findings to inform best practice of supporting those who have experienced pregnancy loss. This is why we are also working on a short book that would be of interest to people who have experienced pregnancy loss and those who support them in either a professional or informal capacity.”

 

What are you currently working on? Is there a particular project or aim that you’d like to share with people.

We are currently analysing the data we have collected and working on our publications. Some of our papers will be available soon. We are currently writing papers about pregnancy loss, language, communication and kinship, the significance of labour in the baby’s biography and about how the bereaved use metaphor to talk about their experience. Karolina and Sarah are also guest-editing a special issue of Women’s Studies International Forum entitled “The presence of absence: Tensions and frictions of pregnancy loss” with contributions from researchers from all over the world. They will be guest-editing a special series of the Nursing Clio blog in October 2018.

We are also keen to use our findings to inform best practice of supporting those who have experienced pregnancy loss. This is why we are also working on a short book that would be of interest to people who have experienced pregnancy loss and those who support them in either a professional or informal capacity.

We are also in touch with other researchers who work in similar areas, such as Lucy Smith at the University of Leicester, who is working on birth and death certification and the effects it has on bereaved parents and we hope to be able to combine our data in future for more in-depth understandings.

 

What motivated you to do the job that you are doing now?

Death Before Birth was made possible due to an initiative by the University of Birmingham to encourage interdisciplinary research. Danielle, Jeannette, and Sheelagh met at a workshop and were tasked with coming up with a project that combined their academic interests and research strengths. Very quickly they saw how their respective expertise in narrative, metaphor and the law and reproductive health could be combined to investigate the choices and decisions that people make following a loss. At that time (autumn 2012) and over the two and a half years that it took to design and develop the project, the topic was subject to increased levels of media controversy and public scrutiny. For example, a ‘Dispatches’ programme on Channel 4 broadcast in 2014 highlighted several scandals regarding the treatment of fetuses in hospitals following pre-24-week losses. In the same year, the publication of the Mortonhall Report about the return of ashes from crematoria was published and it received a fair amount of media coverage.

In sum, it was clear to Danielle, Jeannette and Sheelagh that their topic of investigation was much more than ‘just’ an academic research project that combined their knowledge about methods of research, linguistic analysis and socio-legal approaches to law. The desire to contribute to care and support pathways for bereaved families in meaningful ways was a strong motivating factor as they built partnerships with stakeholders who could ultimately use some of the project’s findings in their work with clients.

 

“We hope that our findings will help to promote best practice and set standards for excellent bereavement care following pregnancy loss.”

 

In what ways does your current role allow you to get involved in the baby loss cause? 

Death Before Birth is an academic project – our job is to produce evidence of practice that can then be used to promote best practice. At the same time, a significant part of the project involved evaluating the uptake of the HTA ‘Guidance on the disposal of pregnancy remains following miscarriage or termination’ from March 2015 – with the assumption that our findings will inform the next review of the Guidance. We hope that our findings will help to promote best practice and set standards for excellent bereavement care following pregnancy loss.

 

What are the biggest frustrations or constraints that you face in supporting those affected by baby loss or preventing baby loss in the first place?

Our data confirm many problems already identified. For those who support, there are, among others, time constraints, bureaucratic requirements, lack of satisfactory training for all staff that come into contact with bereaved parents, and also – very importantly – lack of support mechanisms for staff. Some of the parents we interviewed believed their baby’s death could have been preventable but that it was caused by delays in medical intervention and insufficient or ineffective monitoring.

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Do you think that Baby Loss is still a taboo, and if so, why? Do you encounter issues with it being a taboo in your day to day work?

Yes, it is. The people we have spoken to have all mentioned difficulties in talking about their loss with their friends and families, and relate experiences where people have been awkward or standoffish or have not really known what to say. This seems to be due to a misplaced feeling that those who have experienced pregnancy loss will not want to be ‘reminded’ of the experience.

However, things do appear to be changing for the better. The UK Parliament holds regular debates on baby loss, funding has been awarded to create a National Bereavement Care Pathway with a goal of standardising bereavement care following pregnancy loss in all NHS hospitals. There are provisions in the law that recognise the impact that such a loss can have on the parents, and there are regular awareness-raising campaigns from perinatal loss charities that can help people to find the right words.

We hope that our research – shared in the form of public talks, the blogs on our website and conversations like this one – can also help people discuss baby loss more openly in their workplaces, with their friends and relatives.

 

Who else do you work alongside in terms of baby loss support or prevention? Are there any charities that support you, or perhaps a colleague that you couldn’t manage without?

The project was created in collaboration with the Miscarriage Association, Antenatal Results and Choices, and SANDS who are our main charity stakeholders. Their expertise was invaluable when the project was being designed. We have regularly informed them of our interim findings and have sought their advice when developing the various stages of our research. For example, they were instrumental in helping us to recruit participants for interviews.

In return, we intend to provide academic evidence that will help these charities continue their incredibly important work, ultimately contributing to better care for those who have experienced pregnancy loss.

 

“It has been a humbling experience to hear these very personal accounts and we would like to honour their experiences and the memories they share with us by doing the best job we can.”

 

When the job is hard, what one thing reminds you to keep on keeping on?

It has been a humbling experience to hear these very personal accounts and we would like to honour their experiences and the memories they share with us by doing the best job we can. Many interviewees talk about wanting something good to come out of the loss and we want to help make that happen.

 

We are in a shift change with the understanding and awareness of baby loss. What would you say to someone just starting out in a job associated to baby loss?

That difficult and painful as this subject can be, you are doing something valuable. You will encounter people who are showing amazing resilience in the face of adversity, who are coming together and supporting each other and this can be a very humbling experience. I know that there is still a lot yet to be done but it is a privilege to be able to see how many things are already right, how many tools and resources there already are at people’s disposal, and how many people are ready to give support.

 

“It’s ok to rely on others, even for the most basic of things. It’s also ok to feel and do however you want, for however long you want.”

 

It’s likely that a newly bereaved parent is reading this. What would you like to say to them?

We are so very sorry about your loss – our hearts go out to you. We hope that you’re getting all the support that you need, whatever form that support takes for you.

This is likely to be one of the most difficult experiences in your life. You may be feeling unfamiliar emotions – it may be that the passage of time feels strange, it may be that it does not seem like you will ever laugh again. It’s ok to rely on others, even for the most basic of things. It’s also ok to feel and do however you want, for however long you want.

 

We have some ambitious targets for baby loss currently in the UK. What are your specific hopes for the future in terms of maternity and baby loss?

First and foremost, we hope that the number of preventable stillbirths is significantly reduced. Unfortunately, there will always be babies that die, which is why it is so important to improve the standard of bereavement care following pregnancy and baby loss, to make it uniform across all UK hospitals, and to expand its remit to include counselling for individual parents and couples. Regarding maternity leave and parental leave more generally, it is important that people are made aware of their rights as our data show this is not always the case.

 

Thank you so much for taking part in this interview series. Lastly, before we finish – Is there anything else about you or your job that you’d like to let people know about?

We wouldn’t have this job if it wasn’t for all the people who have contributed to our research in any way. It would have been impossible to do this type of research without the generosity and thoughtful engagement of all the midwives, funeral professionals, charity workers, bereaved families, and the wider support network that has helped all of us work on this very difficult topic. We would like to take this opportunity to sincerely thank them all.

 

To continue to follow the work of the Death Before Birth project, follow the links below

Twitter | Website


 

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This blog post is part of an ongoing spotlight on those working in baby loss. To read more from It Still Takes a Village series, visit the hub page here.

 

 

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