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.
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 intend to apply for a specific research grant aimed at reducing inequalities in maternal health in the United Kingdom to explore transgender peoples’ needs and barriers to maternal health, and their experience of maternity care. We will subsequently use these findings to bring people and professionals together to identify how to move services forward together, either face to face or via webinar. Now, the below polls invite YOU (the public) to indicate what research should be prioritized in this area.
As this research will initially include populations from the UK, please only vote if you also reside in the UK
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.
If you reside in the UK please indicate what matters most via the following short polls. You may also add alternative suggestions at the end of each poll should you wish.
(Psst…There are no right or wrong answers. It’s your view we are interested in)
Whilst any survey would certainly be distributed and completed online, interviews and focus groups may also be conducted online, or face to face. We could also bring people and professionals together online or face to face to identify how to move services forward together…
Many thanks for your responses and suggestions. Please share this blog post far and wide so that as many voices as possible can be included in the design of this work!
If you would like to follow the progress of work going forward..
Until next time…Look after yourselves and each other 💚💙💜❤
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