“Now that there is an increase in LGBTQIA+ families having children there is a need for clear guidance for nursing staff looking after these families to encourage families to feel empowered and well guided while on the unit and beyond”. – Harriet, neonatal nurse
My name is Ilana Levene, I’m a neonatal doctor working in Oxford and I wanted to tell you about a project I’m working on to improve care for LGBTQIA+ families whose babies need extra care after birth.
National surveys suggest that about 4% of people who give birth in the UK are lesbian, gay, bisexual or have other sexual orientations under the LGBTQIA+ umbrella. In addition, about 1% of people who give birth in the UK are transgender. LGBTQIA+ families often have a lot of worries about the care they will receive within the maternity and postnatal system. For example:
“How can I feel safe when worrying about people’s judgements and how that might impact on my care?”
“How can I ensure my healthcare providers use the correct pronouns and parent titles for us, especially in the hospital when we are in a vulnerable space?”
“Will care providers understand the make up of my future family?”
These questions were submitted in the first survey of the project I am running, which is called a Priority Setting Partnership (PSP) for LGBTQIA+ Perinatal Care. The first step of the PSP was to gather unanswered questions about LGBTQIA+ perinatal care directly from LGBTQIA+ people and the healthcare professionals who look after them in the perinatal period. Over 300 people responded to our first survey and sent in over 1000 questions.
We then went over these questions looking for the ones that could be answered by future research. There were many questions like those above that gave insight into LGBTQIA+ people’s worries and information needs, but for the next stage of the project we were looking for questions that research can answer in the future. We came up with 47 unanswered research questions, which summarized and combined lots of the questions that people had sent in. These questions cover topics like fertility, experiences of care, healthcare professional training, infant feeding and mental health. An example question is “What are the similarities and differences for gestational and non-gestational LGBTQIA+ parents bonding with their baby, and how can bonding be maximised?” Gestational and non-gestational parents refers to those carry or don’t carry the baby.
We are now in the second phase of the project where we want LGBTQIA+ people and their healthcare professionals to help us decide which of these 47 questions are most important for research to focus on. If you would like to tell us your priorities for the LGBTQIA+ families we all look after, take the survey here: bit.ly/PSPTopTen
This is what some members of our steering group have to say about the PSP:
“The PSP is a structured space for learning, debate and inclusion which is truly intersectional. This ongoing work and resulting data will hopefully inform future perinatal research and inspire our colleagues to be emboldened in offering personalised care for LGBTQIA+ people, based on evidence” – Nat Boxall, infant feeding specialist midwife in Sherwood Forest Hospitals NHS Foundation Trust
“The LGBTQIA+ Perinatal Care PSP is important to me as back when my wife and I started our journey to create our family, there was a lack of information, guidance and data to support us making informed decisions. Work like this is crucial to understand the needs of such a marginalised community and help inform professionals of what should be known, and researched” – Laura-Rose Thorogood, LGBT Mummies
“For me, the LGBTQIA+ Perinatal Care PSP is important because research needs to answer the questions of those it serves. Our evidence base should address real-life community need. By centering the experiences of those receiving and providing care, the PSP strives to identify depth, breadth, and nuance. Together, these will direct future research towards the most important questions where answers found could most effectively improve perinatal care for a diverse and long-overlooked population.” – Ash Bainbridge, midwife
We would love to get lots of neonatal nurses responding to our survey to share your Top Ten priorities for future LGBTQIA+ perinatal care research. Have a look at the 47 questions and share your voice: bit.ly/PSPTopTen