LGBTQIA+ Perinatal Research
A Priority Setting Partnership for LGBTQIA+ people on pregnancy, birth, infant feeding and the first year after birth
In partnership with the James Lind Alliance, LGBT Mummies, LGBT Foundation, Transparent Change, UK Mutual Aid, the University of Oxford National Perinatal Epidemiology Unit, The University of Oxford Knowledge Exchange Seed Fund and the British Academy's BA/Leverhulme Small Research Grants Programme
What is a Priority Setting Partnership?
Priority Setting Partnerships (PSPs) identify and prioritise evidence uncertainties, or ‘unanswered questions’ in a particular area - in this case LGBTQIA+ perinatal care (which means care around pregnancy, birth and the year after birth). Unanswered questions will be gathered from LGBTQIA+ people, supporters and health professionals. Then these questions will be prioritised by LGBTQIA+ people, supporters and health professionals, showing which are the most important to focus on for future research. This kind of prioritisation helps to make the case for funding future research, and helps researchers look at the most important questions.
Who is running the Priority Setting Partnership?
The PSP is led by a steering group, made up of LGBTQIA+ people and health professionals. You can find information about who is on the steering group here <bios and photos page>. The organisations on the steering group are LGBT Mummies, LGBT Foundation, Transparent Change and UK Mutual Aid. The funding comes from the University of Oxford (Nuffield Department of Population Health Pump Priming fund and Knowledge Exchange Seed Fund), and from the British Academy’s BA/Leverhulme Small Research Grants Programme. The James Lind Alliance helps to guide the steering group through the PSP process, as independent facilitators. Click the links to read our can protocol and terms of reference.
Who are the James Lind Alliance?
The James Lind Alliance (JLA) is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in PSPs for many different topic areas. A James Lind Alliance advisor helps the steering group to run the PSP, and chairs the final prioritisation workshop. The National Institute for Health and Care Research (NIHR – www.nihr.ac.uk) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton. Find out more at https://www.jla.nihr.ac.uk/.
Survey takes approx 15 minutes. The survey closes at midnight on November 30th 2024.
Shaping Future Research for LGBTQIA+ People
There isn’t enough research around LGBTQIA+ people trying to get pregnant, becoming and being pregnant, birth, infant feeding and the first year after birth.
We want to change that and your voice is important.
Survey takes approx 15 minutes. The survey closes at midnight on November 30th 2024.
The first step of the PSP is a questionnaire gathering unanswered questions about LGBTQIA+ people trying to get pregnant, becoming pregnant, giving birth, feeding babies and the first year after birth.
Survey takes approx 15 minutes. The survey closes at midnight on November 30th 2024.
Survey FAQs
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This survey will ask you what questions you want answered by research in this area.
From the answers people send in, we will then identify together the Top 10 priorities for research that would improve care, experiences and outcomes around trying to get pregnant, becoming or being pregnant, labouring, birth and the year after birth for LGBTQIA+ people.
This survey will be a crucial influence in deciding what research will be funded in the future.
We value your time and experience.
All LGBTQIA+ people who fill in the survey can choose to join a lottery to receive one of a number of £10 vouchers.
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First we will ask you some questions about you, to make sure the survey is right for you.
Then we will ask you to tell us your questions about LGBTQIA+ people trying to get pregnant, becoming/being pregnant, giving birth, feeding their babies and the year after birth (including LGBTQIA+ partners and intended parents who are not able to or planning to be pregnant themselves).
Then we will ask you some more questions about your background to make sure we are hearing from lots of different kinds of people.
You can choose to leave your contact details, which will be stored separately from the rest of your answers.
The whole survey will take 15 minutes, or longer if there are lots of questions that you want to tell us about.
You can take some time to think about your questions before you start, and talk to family and friends about it if you like.
You will be able to save your answers and come back at a later time (by pressing “resume later” in the top right corner).
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Click here for Welsh
Click here (translation instruction web page) for instructions if you want to translate into another language.
Click here (message submission form via website) if using a computer or phone to fill out the survey is too difficult (for example if you want to tell your answers to someone on the phone instead)
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Some people who are definitely included, but might worry that they are not:
● You are LGBTQIA+ and have experienced trying to get pregnant without being able to get pregnant
● You are LGBTQIA+ and have experienced pregnancy loss or baby loss
● You are LGBTQIA+ and haven’t yet tried to get pregnant but want to in the future
● You no longer identify as LGBTQIA+
● You are LGBTQIA+ and your partner has experience of trying to get pregnant, being pregnant or giving birth
● You are LGBTQIA+ and have experienced termination of pregnancy/abortion
● You are LGBTQIA+ and have experienced surrogacy (or want to)
● You are LGBTQIA+ and have experienced fostering or adoption of a baby under a year old (or want to)
● You have donated eggs or sperm to an LGBTQIA+ person or people
● Your parent is LGBTQIA+ (and you aren’t)
● Your partner is LGBTQIA+ (and you aren’t)
● You are a surrogate for an LGBTQIA+ person or people
● Doulas
● Health visitors
● Midwives
● Maternity care assistants
● Neonatal nurses
● Nursery nurses
● Early years practitioners
● Obstetricians
● Neonatologists
● Gynaecologists
● Paediatricians
● Psychologists
● Peer support workers
● Psychiatrists
● Mental health nurses
● Psychotherapists
● Allied healthcare professionals
● Healthcare professional students
● Retired healthcare professionals
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Each question will be checked to see if it has already been answered by research.
Questions that have not been answered will be put in order of importance in the next stage of the project. This will be done by LGBTQIA+ people, their family/supporters and health professionals in a follow-up survey and then a workshop. If you want to take part in the second survey or workshop, you can tell us at the end of this survey.
Finally, the top priority questions will be published and we will tell as many people as we can about them to try and make sure that researchers focus on answering those questions, and to help them get funding to do the research. For more information on the end result of a Priority Setting Partnership and its impact, or to see what published questions look like, look here