Over the past couple of years, we (The #EDSMaternity research team) have been ‘putting our hEDS together’ via research to improve maternity care for those with hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility Spectrum Disorders (HSD). As we engaged the public throughout our research, it was highlighted to us that although our projects had been focusing on women, it was not only women who were giving birth. Seemingly, they/them may have been neglected in maternity research.
Both midwives and researchers are keen to identify how new evidence can be generated and used to support and represent a variety of populations. As such, I began to reflect on how we, as midwives might best support they/them more effectively in the birth room. Are we really providing optimum maternity care for those who do not identify as women? Did we have the evidence to support best practice?
I opened this debate up in an article written for the British Journal of Midwifery
I asked ‘As maternity services have historically focused upon women, what does this mean for individuals who do not identify as women and their childbearing journeys?’
Whilst there is growing interest in the United States of America (USA) around advancing transgender health in childbearing, there is limited data available about transgender people and their experience of maternity care (Brandt et al. 2019; Light et al. 2014; Obedin-Maliver and Makadon 2016), leaving the provision of evidenced based maternity care challenging in this regard. For some transgender individuals in the USA, childbearing can be very difficult, with the associated risk of worsening gender dysphoria and a profound sense of isolation (Ellis, Wojnar and Pettinato 2015). Transgender peoples’ experiences of engaging with general healthcare can also include transphobia (Heng et al. 2018) To address these, and any other issues which may also be apparent in United Kingdom (UK) maternity services, there is now a pressing need to explore how transgender individuals experience maternity care and how maternity staff might be best supported to provide more effective maternity care to them.
To reduce inequalities and improve the quality of care in UK maternity services, it is established that new interventions must take account of an individual’s needs and barriers to health (Cumberlege 2016). Consequently, we asked the public via a series of polls what such research should look like and how it should be conducted.
These polls are now closed
Please note: Whilst this project has been inspired by the response to our previous work regarding hEDS/HSD, this future work will not just focus on populations with hEDS/HSD, but all of those within the transgender community.
The UK public was asked to engage in telling us how this research should be designed…
(Psst…There were no right or wrong answers. It was their view we are interested in)
Answers came in as follows:
How would participants prefer to engage in this research?
| COUNT | PERCENT | |||
|---|---|---|---|---|
| COUNTRY | OVERALL | |||
|
Predominantly online |
57 | 82.61% | 82.61% | |
|
Predominantly face to face |
8 | 11.59% | 11.59% | |
|
Other: |
4 | 5.8% | 5.8% | |
Who should participate?
| All groups listed | 21 | 28.38% | 28.38% | |
|
Anyone who has given birth who does not identify as a woman |
18 | 24.32% | 24.32% | |
|
Anyone who does not identify as a woman |
10 | 13.51% | 13.51% | |
|
Other: |
7 | 9.46% | 9.46% | |
|
Anyone who has given birth |
6 | 8.11% | 8.11% | |
|
Anyone currently pregnant who does not identify as a woman |
6 | 8.11% | 8.11% | |
|
Maternity staff |
6 | 8.11% | 8.11% | |
|
Anyone currently pregnant |
0 | 0% | 0% |
Which type of research would matter most?
|
A survey with a large amount of people and a narrower focus |
38 | 52.78% | 52.78% | |
|
A more in depth piece of research with less people (e.g. interviews) |
32 | 44.44% | 44.44% | |
|
Other: |
2 | 2.78% | 2.78% |
Many thanks for your responses and suggestions. We will now go forth in designing new research informed by these very insightful results…
🎓😁🙌❤
If you would like to follow the progress of work going forward..
Follow me via @SallyPezaro; The Academic Midwife; This blog
Until next time…Look after yourselves and each other 💚💙💜❤
References
Brandt, J. S., Patel, A. J., Marshall, I., and Bachmann, G. A. (2019) ‘Transgender Men, Pregnancy, and the “new” Advanced Paternal Age: A Review of the Literature’. Maturitas
Cumberlege, J. (2016) BETTER BIRTHS Improving Outcomes of Maternity Services in England: A Five Year Forward View for Maternity Care. London: NHS England
Ellis, S. A., Wojnar, D. M., and Pettinato, M. (2015) ‘Conception, Pregnancy, and Birth Experiences of Male and Gender Variant Gestational Parents: It’s how we could have a Family’. Journal of Midwifery & Women’s Health 60 (1), 62-69
Heng, A., Heal, C., Banks, J., and Preston, R. (2018) ‘Transgender Peoples’ Experiences and Perspectives about General Healthcare: A Systematic Review’. International Journal of Transgenderism 19 (4), 359-378
Light, A. D., Obedin-Maliver, J., Sevelius, J. M., and Kerns, J. L. (2014) ‘Transgender Men Who Experienced Pregnancy After Female-to-Male Gender Transitioning’. Obstetrics and Gynecology 124 (6), 1120-1127
Obedin-Maliver, J. and Makadon, H. J. (2016) ‘Transgender Men and Pregnancy’. Obstetric Medicine 9 (1), 4-8
Dr Sally Pezaro 