The Linking Loss study: a coproduction project to adapt and test a racially inclusive peer support intervention for women experiencing psychological distress following early pregnancy loss

Background:
Early pregnancy loss occurs in 1 out of 6 pregnancies. Mental health difficulties after pregnancy loss are common. Current mental health support in the NHS for early pregnancy loss is very limited, meaning many families do not receive the help they need. People from Black, Asian and LGBTQIA+ communities are particularly vulnerable to experiencing mental health difficulties after loss. They also often face greater barriers when trying to access support. When available, peer support groups following loss are well liked and used. There is limited research to show if and how they work to improve mental health symptoms. Aim: The Linking Loss programme aims to understand the mental health needs of people who have experienced early pregnancy loss. It especially focuses on the unique needs of those from Black, Asian and LGBTQIA+ communities. We will work together with families and staff to develop a peer support group that is adapted to each of these communities. Our aim is to make sure support is accessible and tailored to each group s needs. Plan: The programme has three linked projects: Understanding personal experiences of early pregnancy loss: we will survey and interview a diverse group of people who have experienced mental health difficulties following early pregnancy loss. This will help us understand their shared and different needs and their experiences of finding and using support. Learning from healthcare professionals: we will survey and interview professionals in NHS Early Pregnancy Units and in the voluntary sector. This will help us understand how best to identify and refer people needing support, and how to help make services accessible. Designing a peer support group: Using information from the interviews and surveys, as well as from wider research, we will work closely with people who have experienced early pregnancy loss as well as the healthcare professionals that support them. In a series of 8 workshops, we will co-design a group peer support programme. Patient Involvement: Our research team has experience in working with diverse communities on sensitive topics. This project was developed together with over 50 people who have personal experience of early pregnancy loss and the NHS and voluntary sector staff supporting them. If funded, 8 of these individuals will join the study team and help shape all aspects of the work. Next steps: This project will produce a detailed, step-by-step manual for a peer support group that is co-designed with people who have experienced early pregnancy loss and those involved in their care. This programme will provide guidance for delivering the group sessions in an inclusive and accessible way. It will be the focus of a future study to test whether it is effective in improving mental health difficulties after loss.

Abstract:
Development work question: Can a coproduction approach result in an adapted peer-led, group intervention for people who have experienced mental health difficulties following early pregnancy loss (EPL), and is inclusive of those from marginalised communities? Background: EPL before 24 weeks affects 15% of all pregnancies and is associated with increased mental health problems. Despite its high prevalence, those affected struggle to access psychological support compared with later pregnancy loss. Those from marginalised groups are often the most a risk of EPL and mental health difficulties, whilst also being those that experience the most barriers to accessing support. Peer-led models of care have high acceptability among those affected by EPL and marginalised communities, but research on their clinical and cost effectiveness, and model of inclusive delivery and implementation are lacking. Aims and Objectives: To develop an understanding of the experiences and needs of people who have experienced mental health difficulties following EPL, with a focus on those from Black, Asian and LQBTQIA+ communities. To use this data in a coproduction approach to develop a peer-led, group intervention, that can be tested for its acceptability and clinical and cost effectiveness in a future full PGfAR. Development work plan: WP1 aims to use a qualitative survey (n=200) and interviews (n=40) with people who have experienced EPL to understand their preferences around psychological support, as well as the barriers and facilitators to accessing it. Participants will be recruited via community groups and social media, and data will be analysed using framework analysis. WP2 aims to use a qualitative survey (n=100) and interviews (n=20) to understand the experiences of EPL professionals in the NHS and third sector in managing mental health difficulties as part of their role, with consideration of inclusive practice. Participants will be recruited via NHS Early Pregnancy Units as well as through social media, and data will be analysed using framework analysis. WP3 will involve a series of 8 coproduction workshops with experts by experience and practitioners that uses the data collected in WP1 and WP2 to develop a peer-led, group intervention to ensure it is inclusive of the experiences and needs of Black, Asian and LQBTQIA+ communities. Timelines for delivery: 24 months starting January 2025. Initial 4-months for study set up, 14-months for qualitative data collection (WP1 & 2), and a further overlapping 14-months for intervention coproduction (WP3), finishing with a final 3-months for write up and PGfAR submission. Anticipated Impact: The PDG will coproduce an inclusive, peer-led, group intervention for people who have experienced mental health difficulties following early pregnancy loss (EPL), that can be further developed and tested on a larger scale, which will inform our application to PGfAR to conduct a full-scale trial. Dissemination: We will coproduce creative ways to share our findings in newsletters, social media, peer-reviewed journals, practitioner magazines and conference presentations.