- National Institute for Health and Care Research (NIHR)
- Dr Mairead Black, Dr Aniebiet Ekong and Dr Avril Nicoll
- Email: email@example.com. Phone: 01224 438425
This work will develop a decision aid to support pregnant women to choose between planning vaginal or caesarean birth during antenatal discussions with health professionals.
- A statement on language
Although most people who are pregnant identify as women, this is not universally true. We want to explicitly acknowledge that some pregnant people will have a different gender identity than ‘woman’ and that our materials are intended to be useful to all pregnant people.
Plan-A project statement on use of sexed and unsexed language
While the Plan-A decision aid will be aimed at all pregnant people, the Plan-A project has a particular focus on supporting mode of birth planning for those who come from underprivileged backgrounds and minoritised groups. We aim to be as inclusive as possible and to ensure that this is reflected in the language we use in our communications with the public and with potential research participants. We are aware, however, that word choices that work well for some do not work well for others.
Not all people who become pregnant identify as women. The Plan-A decision aid should be relevant to these people and the project team are interested to hear from them in the course of the study. Wording such as ‘pregnant people’ or ‘birthing people’ is potentially more inclusive of those who don’t identify as women, but it is, at the same time, difficult and off-putting for others whom the Plan-A project is also seeking to serve. Many people from underserved groups, including those with low health literacy, limited education, learning disability, from minority religious groups or who do not have English as a first language, have a need for plain English communication and/or language that they can relate to. In current circumstances, the word ‘women’ seems necessary here to ensure the accessibility of project information and to support participation in the Plan-A study. A further consideration relevant to the Plan-A study is that key statistics expected to be included in the Plan-A decision aid are likely to have been reported in relation to ‘women’ in the original studies but may also reflect birth outcomes of those who do not identify as women. These considerations mean we have had to make some decisions about how we will use language in the Plan-A study materials.
Our proposal is as follows.
- Where possible, in study adverts and other recruitment information, we will use second-person language such as ‘Have you given birth in the past 10 years?’, giving the text a personal feel and not requiring either sexed or gendered language.
- When nouns are required in our main participant-facing materials, we will use the gendered terms ‘woman’ or ‘women’ where required to refer to people to whom the study is relevant. Similarly, when we refer to statistics in the content of the decision aid, we will use the term ‘women’ to refer to all people to whom the original studies have observed. We will, however, include a brief note in these resources and on the study website acknowledging that the use of the term is not intended to exclude.
- As we plan to translate study materials into different languages to ensure accessibility, we also intend to develop equivalent additional study materials which do not use sexed terms such that these resources will be available for those who do not relate to the term ‘woman’.
- In direct communication with individuals who are participating or considering participating in the Plan-A study, team members will be careful to reflect individual’s preferred identities and pronouns.
Childbirth is a safe and positive experience for most women in the UK, but it often involves input from doctors, e.g. to do an unplanned caesarean section. This can be difficult for women who were not expecting help to give birth or unaware of the possible risks. Equally, some women may feel that they should have had help when they did not. These issues can lead to disappointment, and physical or mental health problems, particularly in women from minority and under-served groups. Aiming for a vaginal birth or having a planned caesarean birth each have potential benefits and harms. Both are reasonable options, and for 10 years national guidance has stated that the risks and benefits of each should be discussed with women during pregnancy to help plan their birth. Legal changes in 2015 made this essential. However, with no guidance or resources to support these discussions between maternity staff and pregnant women, they do not happen consistently, if at all. Highlighting the importance of this, maternity services reported a £2 billion compensation bill in 2018/19, with lack of informed consent and failure to offer a caesarean birth listed as key reasons. Decision aids are tools that can help maternity staff have balanced conversations with women about their birth plan options. They provide a framework for discussions and can increase knowledge, support choice, and reduce regret. Currently, no decision aid exists for planning how to give birth in routine maternity care. We will address this
We will share the decision aid and our plan for embedding it in the NHS with maternity units, policymakers and the public via professional and public networks.
Following expert guidance on developing a decision aid, we will 1) review published scientific evidence and 2) interview doctors, midwives, pregnant women and parents. This will allow us to understand how decisions about birth plans are made, influences on these decisions, what a decision aid should look like (e.g. how best to access, what it should contain) and when to use it in pregnancy. We will survey pregnant women, parents and healthcare staff to identify which outcomes of planned vaginal or caesarean birth are important to know about in advance. We will use these findings to develop a decision aid that will be tested and revised during workshops with women, doctors and midwives. It will then be tested in real-life in five UK maternity units. The testing will assess how women, midwives and doctors value it and will help us understand how best to embed it in the NHS. We will write a plan for how the NHS should adapt to support all women to use the decision aid. We will also consider the financial costs and benefits of using the decision aid.
Our research team includes women, midwives, maternity doctors, and researchers.
- Patient and public involvement
We spoke to eight women about our ideas in 2018 and with four representatives of women’s birth-related support groups in a workshop in 2019. Their input drove the study plans. Four women with different pregnancy and birth experiences, and representation of other women’s views, are part of the research team. Four more women will join them to form a panel to help develop the decision aid and share the findings.