Title: Optimising care for parents experiencing mid-trimester pregnancy loss by reducing variation in policy and practice
Funder: Department of Health and Social Care

Abstract: Research question: How can we reduce variation in policy and practice to improve care for parents following mid-trimester pregnancy loss?Background: Mid-trimester pregnancy loss at 13 to 23 weeks gestation has distressing psychological and social impacts on parents and is estimated to affect 4,500-7000 women a year in England, although a lack of national data means precise rates remain unclear. Many women have to go through labour and give birth knowing that their baby has died or is likely to die soon. Healthcare professionals, parents and charities report variation in care provision across gynaecology and maternity services with differential access to safe, effective clinical and bereavement care.High quality data, identification of best practice care and strong national leadership in mid-trimester loss is vital to facilitate a culture change to improve experiences for parents. Such a strategy has been exceptionally successful in tackling the UK's high rates of stillbirth with major impacts on reducing mortality, improving care and raising societal awareness.Aim: To optimise care for parents experiencing mid-trimester loss by reducing variation in policy and practiceObjectives: 1. To create an evidence base around mid-trimester loss2. To gain an in-depth understanding of current policy and practice and parents' experiences of care3. To develop recommendations for providing evidence-based best practiceMethods: This is a 45-month programme with three linked workstreams. Workstream 1 (Months 1-24) will for the first time create a linked dataset to quantify mid-trimester losses in England, explore epidemiological trends, offer information for planning services and assess data quality for future surveillance. Data sources comprise: Hospital Episode Statistics, Maternity Services Data Set, MBRRACE-UK perinatal mortality surveillance and National Congenital Anomaly and Rare Diseases Registration Service.Workstream 2 (Months 8-33) will develop an in-depth understanding of current policy and practice for mid-trimester loss combining secondary qualitative data about parents' experiences of loss with a national survey of policy and practice in NHS Trusts and detailed case studies of care provision. It will identify barriers and facilitators to delivery of best practice care e.g. training, resources, gaps and opportunities to working in partnership across sectors.Workstream 3 (Months 25-45) will establish a guidance development group comprising professional groups, third sector organisations and parents to develop recommendations for evidence-based clinical and bereavement care based on the evidence from Workstreams 1 and 2.Dissemination: Findings will be disseminated through published clinical guidance, e-learning packages, workshops for service providers, conference presentations and shared through social media to reach researchers, healthcare professionals, bereaved families and the Government.Outputs: Clinical and bereavement care guidance and e-learning to support healthcare professionals Guidance for commissioning and providing care across gynaecology and maternity services Supportive evidence-based patient information for parentsAnticipated impacts: Staff trained to provide sensitive, evidence-based empathic care throughout the pathway Enhanced commissioning and organisation of consistent, safe, effective personalised care linking maternity and gynaecology services Improved care experiences for parents, supported to make informed choices about their care Greater societal awareness of the impact of mid-trimester loss on parents

Lay abstract: The loss of a baby between 13 and 23 weeks of pregnancy, here referred to as a mid-trimester loss, can be a devastating experience for parents with major effects on their health and well-being. While the term miscarriage is often used, many women find this does not describe the distressing physical and emotional experiences of going through labour and birth knowing their baby has already died or is likely to die during or soon after birth. Around 4,500 to 7,000 women experience mid-trimester loss every year in England but precise numbers are not known as babies born showing no signs of life before 24 weeks of pregnancy are not registered.Many parents, charities, doctors and midwives have reported that the care parents receive following mid-trimester loss differs between hospitals. Some women may be cared for in gynaecology wards while others may be cared for in a maternity unit. This may lead to differences in the quality of care parents receive such as women not getting the right pain relief during labour or parents not being cared for by someone trained in bereavement care.I have designed this research in close collaboration with parents personally affected by loss and three major national charities which support parents to ensure that this research meets the needs and priorities of bereaved parents. The research has three main aims: to collect high quality data on the number of women experiencing mid-trimester loss in England and identify those women at higher risk to understand the best ways to provide care based on parents and healthcare professionals experiences to make recommendations based on this new evidence to improve how care is providedThis type of research has had a major impact on the lives of parents following stillbirth (baby loss after 24 weeks of pregnancy) improving the care parents receive and recognising the effect baby loss has on parents. I will use these strategies to have the same positive impact on parents experiencing loss earlier in pregnancy.This research will create a new information resource on mid-trimester loss in England by joining together routinely collected information on maternity and hospital care. I will then create a picture of care provision across hospitals in England combining interviews with parents personally affected by mid-trimester loss and surveys of doctors, midwives and nurses about the care they provide. This will allow us to identify ways to improve the experience and quality of care. We will then look in detail at hospitals which provide excellent care to share their experiences with others. Finally we will then bring together a team of doctors, nurses, midwives, charities that support parents, and parents personally affected by loss to develop national standards for the best way to provide care for women and families. Ensuring the involvement of parents and charities throughout the research is vital to ensure this research is relevant and makes a positive difference to parents' lives.To make sure the research findings are accessible I will share them in different ways. This will include support and training for healthcare professionals and resources to help hospitals redesign their services to improve and standardise the care they provide. We will also produce information for parents to support them when making choices about the care they receive.This research will help doctors, nurses, midwives and paramedics feel confident in providing sensitive, high quality personalised care and ensure that services are designed to be safe and effective. This has the potential to improve experiences for thousands of parents and their families and raise awareness of baby loss earlier in pregnancy in England.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH