The language used in many healthcare settings to describe pregnancy loss exacerbates the grief and trauma experienced by some individuals and can be a critical factor in determining psychological well-being following the loss, according to a new report led by a UCL researcher.
In the first study of its kind, social scientists from UCL, led by Dr Beth Malory (UCL English Language & Literature), gathered data from a total of 339 participants from across the UK - 290 people with lived experience of pregnancy loss and 49 healthcare professionals, including 42 focus group participants.
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 show that language can have a significant impact on the experience of loss and a person's future mental recovery and well-being, 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.
Evidence suggests that more than one in six pregnancies in the UK end in loss each year, and 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.
Participants in the study said they had experienced difficulties in comprehending communication about their care following pregnancy loss which made it "frightening" or "confusing". The research also underlines the risk of further difficulties for people who have 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."
Not since 2005 has there been an empirical study of terminology used in pregnancy loss contexts in the UK, and many of the terms deemed inappropriate by previous findings are still being used in healthcare settings, as reported by participants in this latest study.
Examples of improved practice were seen in some cases, for example, 'reflective listening' - paying close attention to what someone says and letting them know they've been heard and understood - was noted as an important way that people with lived experience could explain their own circumstances using their preferred language.
However, many participants who had experienced pregnancy loss at a range of gestational ages said the language used made their experience harder and called for opportunities to state their own personal language preferences through some kind of official mechanism.
These findings really show just how important language is in pregnancy loss care, and the testimony of those who took part in the study illustrates the long-term impact it can have on someone experiencing pregnancy loss.
Our evidence clearly indicates the steps we can take to improve language during and after experiences of pregnancy loss and lays the groundwork for a more conscientious and compassionate approach."
Dr. Beth Malory, lead author
The study makes four recommendations for healthcare practitioners to think about in future interactions with those experiencing pregnancy loss:
- Be aware that language matters - the words you use can deeply affect someone's experience of pregnancy loss, so use the same language they do
- If in doubt, ask - ask how someone wants you to talk or write about their experience and their baby. This helps you understand their feelings and choose words that match
- Use framing strategies - once you know how someone sees their loss and their baby, consider using framing strategies, e.g. talking around a clinical report in more gentle terms, to reduce the impact of difficult language
- Respect their preferences - do not use language that goes against how someone has described their experience or their baby, including using dehumanising language when the baby has been given a name
Dr Jyotsna Vohra, Director of Research, Programmes and Impact at Tommy's, said: "We know from our communities that some of the words still used routinely to describe experiences of baby loss can be deeply upsetting.
"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 welcome the recommendations in this report and hope they will inspire change where it is needed, and soon."
Mehali Patel, Research Manager at Sands, said: "Sands has a proud history of amplifying and connecting, so parents voices and experiences of pregnancy and baby loss are heard. We were pleased to help recruit parents and professionals to be a part of this important research because bereaved parents tell us that the way health professionals talk about what happened to them, their pregnancy and their baby can have a big impact on their mental and physical wellbeing.
"While sensitive communication can't take away the pain of their loss it can help parents cope with their loss through understanding why their baby didn't survive, or their pregnancy ended early.
"Listening to parents can save babies' lives. If someone who has experienced pregnancy loss decides to try for a baby again, the way that a health professional communicated 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."
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