Clinical language used around pregnancy loss can negatively affect patients' mental health and exacerbate their grief and trauma, and should be personalised where possible, 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."
