As an academic midwife, I care about doing research which supports and improves the high-quality delivery of maternity care. Successful research must also have a positive impact upon the world, otherwise we must question why we are doing it in the first place. Having said that, research is a journey of discovery in which we are constantly learning and evolving our thinking in light of new evidence. Yet it isn't just evidence that steers the direction of new research and the development of new research questions. Patient and public involvement (PPI) can also shape the design of future research projects and ensure that everything remains focussed upon what matters most. As such, I try to engage a diverse range of people in the research projects I am involved in. I do this predominantly online.
In one example, we asked new mothers how they viewed the workplace distress of midwives (Pezaro et al, 2018). In a more recent case, we invited people with hypermobile Ehlers-Danlos syndrome (hEDS), or the related hypermobility spectrum disorders (HSD), to complete a poll and share their views on what questions should be asked in an international survey relating to their childbearing experiences. In both of these instances, we were enlightened by the responses and engagement we received. Evidently, what researchers think they may know, can often change when they speak to those who form the subject of their inquiry.
Equally, as a project progresses, significant themes can emerge which enable one to reflect and discover new directions for future research. As the #EDSMaternity research team, we recently launched our international survey asking women with conditions relating to hEDS/HSD about their childbearing outcomes and experiences of maternity services. We were eager to watch the data flood in. We also shared our recruitment details far and wide, asking others to share the survey link with their peers. Yet the online health community quickly responded with insights in relation to who we were asking and why. Broadly, comments were made along the lines of:
‘It's not only women who give birth, you know!’
‘You may get more responses by using more inclusive language!’
Hence, we began to reflect on how and whether we should have phrased our survey to be more inclusive of those having babies who do not identify as women. Yet, although this group may have had similar outcomes in childbirth physiologically, we were not convinced that their experiences of maternity services would be wholly comparable with those whom identified with the gender aligned to the sex assigned to them at birth (cisgender).
We also became very aware that more and more people were beginning to use the plural pronoun of ‘they/them’ as a gender-neutral singular pronoun. Others clearly do not embrace the use of he/she, yet others are reinforcing how they identify with certain genders with the use of pronouns like ‘she/her’ and ‘he/him’. At the same time, other professional conversations began to stir around the use of terms such as ‘women’ and ‘mother’ in the midwifery world, and much like the term ‘normal’, it seems there is no one size fits all.
Unlike the term ‘cisgender’, transgender (or ‘trans’) is an umbrella term that refers to individuals and gender minorities who do not identify with the gender that is typically associated with someone of their sex assigned at birth (Puckett et al, 2018). These minorities may instead use a variety of alternate terms to describe their identities. There is a great diversity of identities under the transgender umbrella, with some individuals even living between or outside of commonly known genders. Others may in fact not identify with any gender at all. Yet, as maternity services have historically focussed upon women, what does this mean for individuals who do not identify as women and their childbearing journeys? After all, ‘midwife’ means to be ‘with woman’.
I have no doubt that midwives want to provide high quality maternity care for all families and their babies, but do we really understand how to care for this unique subgroup of childbearing individuals? Whilst there is growing interest in the US around advancing transgender health, there is limited data available about transgender people and their experience of maternity care (Light et al, 2014; Obedin-Maliver and Makadon, 2016; Brandt et al, 2019), leaving the provision of evidenced based care challenging in this regard.
For some transgender individuals in the US, childbearing can be very difficult, with the associated risk of worsening gender dysphoria and a profound sense of isolation (Ellis et al, 2015). Our PPI activities have uncovered a pressing need to now explore how those who do not identify as women experience maternity services in the UK. Moreover, to reduce inequalities and improve the quality of care in UK maternity services, new interventions must take into account these individual's needs and barriers to health (Cumberlege, 2016).