Why did we need this research?
It has been almost 30 years since medical literature in the UK first acknowledged that language can be an important aspect of patient care during and after pregnancy loss. However, for many families going through loss, the language used by healthcare professionals continues to negatively influence their experiences and has also been shown to affect future psychological wellbeing. The EStELC project set out to further understand the important role that language has in shaping pregnancy loss experiences and explore what recommendations can be made to reduce the impact of traumatic language for families experiences pregnancy loss in the future.
What were the aims of this project?
The team set out to answer 4 key questions:
- What language is being used to describe different experiences of pregnancy loss in UK health settings?
- What impact is such language having on experiences of receiving and delivering healthcare during and after pregnancy loss?
- How do people with lived experience of pregnancy loss, or professional experience of delivering care to those experiencing pregnancy loss, feel about the language used?
- What recommendations can be made for implementing a language framework for pregnancy loss in healthcare settings in the UK?
The researchers heard from 339 participants; 290 people who had lived experience of pregnancy loss, and 49 healthcare professionals involved in caring for people during or after pregnancy loss.
What did this project find?
Through this research, key themes around the use of language emerged. Participants stated that the use of technical language was often confusing, especially when English was not someone's first language. Many terms used were also noted as 'cold or cruel'. Another key area highlighted was that terms such as 'miscarriage' and 'incompetent cervix' contributed to feelings of guilt and self blame following loss, and made them feel as though they had failed their baby or that their baby had never existed. While examples of good practice were highlighted, families called for more flexibility from healthcare practitioners on language preferences and for opportunities to state their own personal preferences through some kind of official mechanism.
The key recommendations made to healthcare teams are:
- Be aware that language matters: language can play a big role in someone’s experience of pregnancy loss. One way you can help is to make sure you echo the words used by the person you’re caring for. For example, if they talk about their baby when they’ve had an early miscarriage, you should also say baby rather than any other terms.
- If in doubt, ask: ask the person you are caring for how they want to you to talk about their baby. It’s okay to ask questions, as this will help you better understand their experience and choose language that best aligns with their feelings.
- Explain any medical terms that you might use: there are certain things that healthcare professionals just can’t get away from in terms of clinical terminology, but we can make sure we express these in a sensitive way. Once you know how someone is feeling and thinking about their loss and their baby, you should make sure to explain what any terms or phrases used mean, or use gentler terms. This can help alleviate the impact of any upsetting language.
- Be careful not to challenge someone’s experience: where someone has clearly expressed how they want to talk about their baby or pregnancy loss, don’t use or encourage them to use language or terms that go against this. Everyone’s individual experiences are valid, and there is no right or wrong way for them to process their loss. Be supportive by actively using language they have shown they want to use.
