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Research Coordinator wants LGBTQ+ south Londoners heard

We spoke to University College London (UCL) Study Coordinator and PhD candidate Kate Luxion. They talked about the NIHR-supported Legacies and Futures study, running in south London, the importance of inclusive research practices and the need for people-centred care.

What are the aims of the Legacies and Futures study?

The Legacies and Futures study is working to better understand the roles of resilience and vulnerability in pregnancy and birth outcomes for lesbian, gay, bisexual, transgender, and/or queer (LGBTQ+) parents. In particular, the study wants to know what differences there might be for LGBTQ+ parents compared to their cisgender, heterosexual peers. We will use survey responses combined with study volunteers' patient records to help make the connection between health and wellbeing and the experience of stigma and discrimination that marginalised parents face.

Why is it important that assumptions aren't made in healthcare?

Communication is a crucial element in providing health care and support services. Assumptions undermine the ability to have clear and thorough communication and, thus, comprehensive and accurate health care. For LGBTQ+ patients, navigating assumptions can be an unfortunately common experience of trying to access health care. For example, when they are not asked about their personal lives and instead are given advice based on the assumption that they are heterosexual and cisgender. On the surface, this might seem small, but it can shape the tests and health services that people are offered. These are preventable sources of discrimination that can be resolved through inclusive practices.

In research, similar to medical settings, the important questions are not being asked around gender and sexual orientation, which means that the evidence used in care does not clarify how the outcomes are relevant to LGBTQ+ people - which in turn means that it is not possible to ensure the proper provision of care accounts for all. Additionally, it is not guaranteed that being able to share your gender and sexual orientation in a medical setting will mean that the quality of health care and services received will be the same, as there is a social stigma attached to being a gender or sexual minority. These sources of stigma and discrimination are ways in which minority stress, as additional layers of stress alongside general daily stress, can influence the health and wellbeing of LGBTQ+ people.

What brought you to CRN South London's Inclusivity Panel meeting?

I heard about the meeting from others who are working hard within south London to bring about more inclusive health and care research. As there is not much research about LGBTQ+ pregnancy and parenthood, speaking about the study and the need for more research with the Inclusivity Panel was an excellent opportunity to raise awareness!

What do you think of CRN South London's Inclusivity Panel?

The time I was able to give to the meeting was terrific. Seeing the work being done to ensure that research in south London is as representative as possible was encouraging. It was fascinating to see how the impacts are reaching far beyond London. It would be wonderful to come back and present the findings once the study concludes and hear more about the other ongoing work within south London.

What are potential barriers to research for the LGBTQ+ community?

There are some generally known barriers to participation for LGBTQ+ people, though it would be helpful to explore this more with the LGBTQ+ community in south London. Research has found that stigma and discrimination in daily life can limit financial resources and support, making it more difficult for people to find the time and means to participate in research. Similarly, based on experiences with exclusion, volunteers may start to participate in studies only to discover that, because of the lack of inclusive questions, the research assumes all participants are heterosexual and cisgender. This assumption can be demoralising and lead to people not wanting to take the time to be involved in research that makes them feel invisible.

Is there anything else you'd like to add?

I can only add a reminder about the power and importance of patient and public involvement in research. Areas in south London report higher percentages of LGBTQ+ residents compared to other parts of London. Therefore it is essential to establish community engagement groups to ensure that more LGBTQ+ voices are incorporated into the planning and delivery of research in south London.

You can learn more about the Legacies and Futures study on the UCL website.

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.