Some words and phrases commonly used in the context of pregnancy loss are unacceptable to bereaved parents, according to research published today (21 November) by University College London (UCL).
Language can have a significant impact on the experience of pregnancy loss and a parent's future mental health and well-being.
The UCL researchers' approach to exploring attitudes to pregnancy loss language in the UK has produced the first evidence-based recommendations on pregnancy loss language.
The main aim of the UCL research project, Acceptability in pregnancy loss language, was to identify any language used in relation to pregnancy loss in the UK that is particularly unacceptable to people with lived experience of pregnancy loss, and to identify alternative words that are more acceptable.
Previous research, published by UCL in September 2024, found 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.
The latest findings show there are many words and phrases commonly used in the context of pregnancy loss where there is clear consensus among those affected that certain words and phrases are unacceptable.
Sands puts bereaved parents at the heart of pregnancy loss research
Sands supported the UCL research by involving bereaved parents in the study who were asked to take part in an online survey. We provide free training for professionals that covers communicating sensitively with bereaved parents and personalising communication around pregnancy and baby loss.
“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."
- Mehali Patel, Sands' Research Manager.
Key findings from the UCL research
Of all the terms considered by this study, the majority (83%) of respondents with experience of loss between 14 and 39 weeks rated incompetent cervix and/or cervical incompetence as ‘unacceptable’ for use in healthcare settings.
One of the most commonly used words, miscarriage was rated ‘unacceptable’ by the majority (61%) of participants who had experienced loss at 18-23 weeks of pregnancy. Phrases containing the word death, such as fetal death, intrapartum fetal death, and intrauterine death are all rated ‘unacceptable’ for use in healthcare settings by a majority of participants.
In terms of language used to refer not to the process of pregnancy loss but rather the outcome, the overwhelming majority of respondents considered baby the most acceptable word to use regardless of the gestation at which the loss occurred.
A label that prompted a mixed response from research participants is Termination for Medical Reasons (TFMR), which refers to interventions to end a pregnancy because of a medical condition affecting either the baby or the mother/birthing person. Across all gestational brackets, this phrase was rated ‘acceptable’ by less than half (41%) of respondents and unacceptable by just under a third (31%) of respondents.
“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.”
- Mehali Patel, Sands' Research Manager.
‘Acceptable’ language identified by the research
One of the words most consistently rated as ‘acceptable’ by participants was baby, with most respondents with experience of loss in every gestational bracket rating this as ‘acceptable’. Overall, humanising labels such as baby and ‘Their given name’ were rated very positively.
Turning to diagnostic labels for types of loss which were rated as ‘acceptable’, pregnancy loss was consistently rated by a majority of respondents as ‘acceptable’ in every gestational bracket for which data are available, apart from 40 plus weeks. There was no evidence that the word stillbirth was unacceptable; 84% of people who had experienced a loss after 24 weeks rated the use of stillbirth as ‘acceptable’.
Like stillbirth, born asleep or born sleeping was consistently rated ‘acceptable’ by a significant majority of participants who experienced loss after 14 weeks, both inside and outside of healthcare settings, with little variation according to the stage of pregnancy during which the loss occurred.
Finally, the phrase ectopic pregnancy was rated as ‘acceptable’ by the overwhelming majority (91%) of respondents with lived experience of a pregnancy involving implantation outside the uterus.
These findings provide robust evidence that the word baby should be the preferred choice in communication around the loss of a wanted pregnancy at any gestation, and that dehumanising language such as products of conception and pregnancy tissue should be avoided wherever possible.
Next steps on improving language around pregnancy loss in healthcare
The authors of the study have made recommendations for professionals on the language that they should avoid using when talking about pregnancy loss, and on the acceptability of some words.
Overall the research has made significant progress in identifying the best possible language to be used where pregnancy loss language cannot be individualised, such as public health information websites or leaflets, and policy language.
You can find out more and access the full research findings from the UCL website.
Sands is here for you
We understand that research like this can bring up all kinds of emotions. Sands is here for anyone affected by pregnancy loss or the death of a baby, however recently or longer ago, for as long as they need this.