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.

Reader Post: Jade’s Story

As part of this blog, we invite readers who have experienced pregnancy loss or stillbirth to share their stories with us. You can submit your story on our Share Your Experiences page.

We’re very grateful to Jade for getting in touch with her experience. Thank you, Jade, and we wish you all the best.

This year in March (2018) my partner and I found out I was pregnant. The pregnancy itself was not planned but it was however a wanted pregnancy.
Neither of us had experienced any kind of pregnancy in our relationship or any others so we were clueless on what to expect. We told our families rather early on (around 8 weeks) and planned for our future with a baby. Unfortunately this wasn’t to be. At 10 weeks I began to bleed. Light at first which then became heavier. My doctor referred me to EPU and I had a scan. The scan didn’t show a heart beat and we were told that we needed to speak to a doctor.

The doctor we saw gave me a blood test to check HCG and asked me to return 2 days later for another for comparison.

I was very anxious for my results and counted the days for my next blood test, however on the day I was phoned by my doctor and told to go in for a scan not a blood test. I made sure my bladder was full and arrived at New Cross EPU for another scan. I waited for an hour to be seen and was taken into a small consultation room. My doctor apologised and said she had given me the wrong information – they wouldn’t be giving me a scan or a blood test today. I was confused and angry, The doctor informed me that this was in my best interest and that having a blood test would only make me anxious. I requested a second opinion but was turned away.

The next day I had heavier bleeding and clots. I called 111 and they referred me to a walk in centre. The doctor at the walk in was very sympathetic and sent me to the emergency room at the maternity ward. The emergency room at the maternity ward were less sympathetic and I saw a nurse who took down my symptoms and I waited for a doctor.

The doctor arrived and looked at some notes. It was the same doctor who refused to give me a blood test the previous day. She told me that she would not offer me any other advice other than to wait for 2 weeks to see if the pregnancy was successful. I was discharged and sent home.

I was not given any advice on what to expect from a miscarriage or that I would be in pain or pass any remains. I was not advised to keep any remains for inspection so at home the night I was sent away from hospital I lost my pregnancy alone and into my toilet. All of this on my 30th birthday.

I returned to the hospital 2 weeks later which showed that my pregnancy was all gone and the only advice I was offered was that my next period may be heavier or lighter than usual due to miscarriage. There was no mention of help or any leaflets given or the process for trying again. I was sent home and that was it.

My story does have a happy ending. I am currently 19 weeks pregnant and the support I have received from NHS is much better the second time around.

Baby Loss Awareness Week, 2017

Today marks the first day of Baby Loss Awareness Week 2017. It’s an opportunity for people who have been affected by baby loss to find community with others, to commemorate their babies’ lives, and to raise awareness of the issues surrounding reproductive loss in the UK with the aim of improving support available. It is supported and promoted by a number of charities, three of which are our partners on the Death Before Birth Project: ARC, the Miscarriage Association, and SANDS.

The Death Before Birth project has been running for a little over a year. We research the experiences of people in England who have experienced miscarriage, termination for fetal anomaly, and stillbirth. In particular, we are interested in the decisions they make throughout the process, including how they choose to mark and commemorate their loss, and the factors involved in making these decisions. The linguists on our team are also interested in the language the bereaved and those who support them use to talk about their experiences and their emotions. Over the next four days, we will be publishing a series of short blog posts here, explaining what we have already found out, what we are currently working on, and the next steps for the project. You can also read more about us and our work on the About the Project page.

Baby Loss Awareness Week ends on Sunday 15th October (International Pregnancy and Infant Loss Remembrance Day) with the Global Wave of Light at 7pm. Participants light a candle at 7pm, wherever they are in the world, and leave it burning for at least one hour to remember babies who have died. The Death Before Birth project team participated a little early, by lighting three candles in our team meeting this morning. We will be ‘lighting’ them virtually again, here on the blog, on Sunday.

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Sarah (left, post-doctoral research fellow in linguistics) and Danielle (right, Principle Investigator) light the Wave of Light candles on behalf of the rest of the team

 

Reader Post: Charlotte’s Story

As part of this blog, we invite readers who have experienced pregnancy loss or stillbirth to share their stories with us. You can submit your story on our Share Your Experiences page.

We’re very grateful to Charlotte Dawson, who blogs at The Mummy with Empty Arms, for getting in touch with her experience. Thank you, Charlotte, and we wish you all the best.

I have had three pregnancy losses, one in each trimester. Each one has been completely different but equally heart breaking.

My first pregnancy loss was at 8 weeks. Following going to A&E after having a small bleed, I was sent home with no information about what was going to happen to me. I remember having really severe cramps that kept on getting worse. I went to the toilet and then the pain subsided slightly. Looking back I realised what had happened, that I had passed my first baby in the toilet and flushed them away. That memory still plays on my mind today. I had support from friends and family afterwards but no help from my GP or the hospital.

My second pregnancy loss was at 16 weeks. My midwife couldn’t find a heart beat at a routine appointment. I was sent to triage in the maternity unit of Carlisle hospital. A lovely doctor and midwife looked after my husband and I whilst we had a scan to find out what happened. They needed to have further advice so a different doctor came in to look at the ultrasound screen. He simply commented “I think it’s obvious isn’t it.” There was no apology or empathy from him at all. Luckily, this was the only negative experience I had as the rest of the maternity team were phenomenal. I came back to Carlisle the next day where my husband and I were given the bereavement suite to stay in. The staff explained everything that would happen to me and the post mortem process as my husband and I had asked for one to be performed. I was induced in the morning and my son was delivered in the evening. We chose to only see him once and then we went home in the evening. The staff at the hospital were absolutely fantastic and gave us a memory box with our son’s blanket in. Our son was cremated after his post mortem and we chose not to have his ashes sent back to us. With hind sight I wish I had spent more time with him and asked for his ashes but I have to understand that we made those choices at a very difficult and confusing time for us.

After returning home from hospital, I was supported by my midwife, my bereavement midwife, family and friends. I was receiving counselling for my anxiety during my pregnancy and so this continued after my son had passed away. Once again, my boss was incredible and extremely supportive. I went back to work on a phased return after being off work for around 6 weeks. I knew I had a safety net and if I had any worries, I knew I could tell her and that she would support me. We received our son’s post mortem results around 10 weeks after he was born. Our consultant was fantastic, he explained the detailed report to us and was extremely kind and caring.

Unfortunately I recently had my third pregnancy loss at 35 weeks. Even though I had been monitored very closely by my midwife and the hospital, we found out that my daughter’s heart beat had stopped after being concerned about not feeling her move since the night before. She was delivered the next day by c-section and I stayed in hospital for a couple of days. Once again the staff at Carlisle were incredible and very supportive. They explained what would happen during my operation, my recovery, spending time with Alice and the post mortem process. My midwife gave us a memory box with keepsakes of Alice. The memory box had been provided by the charity 4Louis and is a huge source of comfort for us.

My husband and I spent lots of time with Alice making important memories. Our parents also spent time with her too, it was only after losing Alice that I realised the impact that our pregnancy losses had on our families too. We had a funeral for Alice and then scattered her ashes around a tree that we planted for her. The funeral director was very supportive and explained what would happen during the service and answered all of our questions.

We have received incredible support from our midwife who still texts me and comes to see us every week. My bereavement midwife has been lovely and has called me regularly to check how we are doing and my GP has been great. We are still waiting for our post mortem results which should come back in the next few weeks. Once again my boss has been incredible and is supporting me even though I am not back at work yet.

I have learnt that it is vital to talk about what has happened to us, be it with medical professionals, family, friends and/or colleagues. I have also found that writing is an excellent way of processing what has happened especially when I can’t vocalise how I am feeling. My husband and I have written in a diary to Alice since we came back from hospital. It doesn’t take the pain away but it allows us to reflect on what has happened and remember the memories that we made with Alice whilst we were in hospital. I have also started writing a blog about my experience of pregnancy loss. I have done this as I firmly believe that it is important to make others feel like they are not alone going through pregnancy loss. There is always support out there for them.