The language used in many healthcare settings to describe pregnancy loss exacerbates the grief and trauma experienced by some individuals and can affect mental health following the loss, according to research led by a UCL academic.
In the first study of its kind, published today, social scientists from UCL, led by Dr Beth Malory (UCL English Language & Literature), gathered data from 391 participants from across the UK with lived experience of pregnancy loss to provide guidance for mass communication around loss.
This follows Dr Malory’s earlier study, published in September, which analysed responses from another 339 participants – 290 with lived experience and 49 healthcare professionals, including 42 focus group participants – to support delivering individual care and provide guidance on clinicians’ responses to patients who had suffered a loss.
Together with national pregnancy and baby loss charities Tommy’s and Sands, the research team sought to understand the pivotal role language plays in shaping experiences of pregnancy loss at all stages of pregnancy and to explore what recommendations can be made to reduce the impact of traumatic language in the future.
The findings, presented in the two studies, show that language can have a significant impact on the experience of loss and a person’s future emotional recovery and wellbeing, and that there are currently no common processes in place to allow those experiencing pregnancy loss to feel able to express or influence their language preferences.
More than one in six pregnancies in the UK end in loss each year. Concerns have been raised over several decades by clinicians, charities and affected individuals that language plays a key role in shaping experiences of pregnancy loss.
The first report presented qualitative findings and case studies from the research. Participants said they had experienced difficulties understanding communication about their care following pregnancy loss, which made their experience ‘frightening’ or ’confusing’, and called for opportunities to state their personal language preferences. The research also underlines the risk of further difficulties for people who use English as an additional language.
Words such as ‘abortion’, ‘feticide’ and 'termination’ were described by participants as very challenging and distressing when used to provide medical information about procedures involved in the loss of a much-wanted baby. Others said such words as ‘miscarriage’ and ‘incompetent cervix’ contributed to feelings of guilt and self-blame after pregnancy loss.
Focus groups also associated phrases such as ‘blighted ovum’, ‘empty sac’, and ‘chemical pregnancy’ with strong negative emotions and felt that in some contexts, such language implied that they had failed or that their baby had never existed. They called for more flexibility from healthcare practitioners to accommodate the wide range of emotions felt by someone experiencing pregnancy loss.
One participant said in a written contribution to the study, “The language used during my first pregnancy loss was horrific and inappropriate. This led to increased trauma around my loss.”
The first study made four recommendations for clinicians dealing with pregnancy loss:
- Be aware that language matters
- If in doubt ask (about language preferences)
- Use framing strategies (e.g. using softer terms when talking about a clinical report)
- Respect patients’ preferences
In the second paper, published today by the UCL Survey of English Usage, researchers analysed the specific language used in clinical settings, considering its use in mass communication to patients.
They found that the word ‘miscarriage’ was divisive, with 62% of respondents who had experienced pregnancy loss before 24 weeks rating it as acceptable. ‘Pregnancy loss’ was considered acceptable at any stage of pregnancy by 81.6% of respondents.
Of the language rated the most negatively, ‘cervical incompetence’, ‘cervical insufficiency’ and ‘incompetent cervix’ were rated unacceptable at similar rates, at 83.1%, 81.1% and 83.3%.
Lead author Dr Beth Malory said: “The findings published today allow us to make concrete, evidence-based recommendations on what language should be used and, perhaps more importantly, what language should be avoided where it isn’t possible to tailor it to someone’s individual needs.
“Our recommendation is still that language around pregnancy loss should be individualised as much as possible, as this reflects the huge variation in how loss is experienced and the important role it plays in shaping the experience for many.
“Today’s findings present policymakers and others writing for large audiences with recommendations for language that will cause the least harm to those who have experienced pregnancy loss.”
Notes to Editors
For more information or to speak to the researchers involved, please contact:
Kate Corry, UCL Media Relations. T: +44 (0)20 3108 6995, E: k.corry@ucl.ac.uk
Beth Malory; Linguistic Challenges in Communicating about Pregnancy Loss: Final EStELC Project Report is available through the UCL Survey of English Usage.
Beth Malory; Supporting policy makers to negotiate communicative challenges around pregnancy loss was published through the UCL Survey of English Usage on Thursday 21st September.
Partner quotes
Kate Davies, Associate Director of Information and Support at Tommy's said:
“We often hear from our communities that some of the words still used routinely to describe experiences of baby loss can be deeply upsetting.
“We welcome the evidence-based insights from this study around terminology that bereaved parents find objectionable and practically, where there is clear consensus around acceptable words.
“There is no language that can take away the pain, but the trauma and grief from this loss can be made worse if described in ways that feel uncaring and unfamiliar.
"We hope that this report proves to be a watershed moment which leads to the greater adoption of terminology which helps women, birthing people and their families to be seen during their trauma. As importantly, we hope it leads to outdated and insensitive language phased out of clinical settings altogether."
Mehali Patel, Research Manager at Sands, said:
“At Sands we know that while sensitive communication can’t take away the pain of their loss it can help parents cope, by giving them a better understanding of why their baby didn’t survive or their pregnancy ended early. We were pleased to be part of this important study and to give bereaved parents an opportunity to share their experiences. The findings show that the words used by health professionals when talking to parents about pregnancy loss can have a big impact on their mental and physical wellbeing.
"For someone whose much-wanted baby has died, at whatever gestation, hearing words that are clinical, cold or cruel can leave them feeling even more emotionally devastated on leaving the hospital. Some bereaved parents carry an enormous amount of guilt after loss, so it's vital that the language health professionals use does not initiate or compound the sense that someone's body failed them and their baby, as this can make it harder to cope and in the worst case scenario lead to significant mental health issues.
“Health professionals talking to parents about pregnancy loss should always take time to listen to the words parents use and aim to mirror this, for example whether someone talks about their pregnancy or their baby. Technical terminology or medical terms that are less than compassionate, such as incompetent cervix, should not be used when talking with parents. The research shows that commonly used words like miscarriage may be unhelpful to some people, so the key is to be led by the parent's wishes.
"Listening to parents can also save babies’ lives. If someone who has experienced pregnancy loss decides to try for a baby again, the way that a health professional communicates could lead to them having a safer pregnancy, for example through a better understanding of their health and pregnancy and when to raise concerns. In the future we hope to see compassionate and personalised communication being a central part of providing safe and effective care.”
Additional material
Summary report for the first study available here
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About Tommy’s
Tommy’s offers advice for family and friends about what to say to someone who has experienced the loss of a baby https://www.tommys.org/about-us/news-views/what-say-someone-who-has-lost-their-baby
About Sands
Mehali Patel was Project Co-Lead Representative on the UCL research. Sands helped UCL to recruit parents and professionals to take part in this work, and were part of the advisory group that helped to shape the research and interpret the findings.
Sands is the UK's leading charity working to save babies' lives and support bereaved families. Sands’ vision is a world where fewer babies die and when a baby does die, anyone affected receives the best possible care and support for as long as it is needed.
Sands is here for anyone affected by pregnancy loss or the death of a baby. The charity provides bereavement support services both nationally through its Freephone helpline, online community and resources, and locally through a network of around 110 regional support groups based across the UK and run by trained befrienders.
Sands works in partnership with health care professionals, trusts and health boards and offers a range of training programmes and bereavement care resources to ensure that every bereaved parent and family receives the best possible care wherever they are in the UK.
Sands supports and promotes research to better understand the causes of baby deaths and save babies’ lives. The charity also raises awareness of baby loss and works with governments, key influencers and other stakeholders to make reducing the number of babies dying a priority nationally and locally. www.sands.org.uk
Method of Research
Survey
Subject of Research
People