Title: Improving the quality and value of enhanced developmental surveillance and support for preterm infants and their families
Funder: Health Education England

Abstract: Worldwide more than 1-in-10 pregnancies will end with preterm birth. Infants born preterm, particularly before 30 weeks gestation, are at increased risk of lifelong developmental disabilities. Parents of preterm infants can feel disempowered and uncertain about the developmental prognosis of their infant, leading to stress and anxiety. This can influence their ability to promote their infants development and ability to engage effectively with health services. National guidelines recommend that enhanced developmental surveillance and support (EDSS) is offered to all infants born before 30 weeks gestation. EDSS involves the active monitoring of the development of preterm infants at set times using specific tools. This aims to target support and interventions to those infants most at risk of disability, while offering an opportunity for clinicians to reassure parents of infants recognised to be at lower risk of disability. Collection of outcome data is essential to gain an accurate overview of current practices that can inform and promote improvements in neonatal care. Currently, there is wide variation in structure and content of EDSS services in the UK. Attendance is variable and there is lack of information about parental understanding of EDSS and the priorities of parents and clinicians. It is unclear whether the assessments undertaken and subsequent outcomes are important to families or whether they address their 'real-life' concerns. The overall aim of this research is to improve EDSS for preterm infants and their families. This will be achieved though the co-production of an intervention(s) informed by the experience and expertise of service users (parents) and providers (clinicians). Specifically, this research aims to understand how parents of preterm babies experience EDSS and critically explore how information is shared with parents about the potential risks of disability in order to identify barriers and facilitators to delivering effective EDSS.There will be four phases of research: A qualitative evidence synthesis of the literature on parental experience of EDSS for preterm infants. A cross-sectional web survey to map current EDSS services, policies and pathways offered by UK neonatal services. An ethnographic study at three carefully chosen neonatal units using methods including observations, interviews and document analysis to gain a detailed understanding of the current practice and identify areas requiring improvement. Intervention prototypes to improve EDSS services will be developed using a co-production method that uses findings from phases 1-3, wider evidence and expertise based on the lived experience of parents and clinicians involved in this process.Anticipated impact: This research will provide new knowledge regarding the clinical provision of EDSS in the UK. It will explore the main priorities of parents and clinicians and identify specific areas for service improvements. A co-produced prototype intervention(s) will be developed for later feasibility and pilot testing. Dissemination: The findings will be submitted for publication in peer-reviewed journals and presented at study days and relevant national and international scientific conferences. I will explore how best to disseminate research findings to parents and the public via the advisory group, but anticipate that this may be through newsletters, presentations and social media.

Lay abstract: Babies who are born very prematurely (more than 10 weeks early) are at increased risk of long-term developmental problems, which may affect their ability to see, move and learn. The potential risk of their baby having difficulties can be extremely worrying for parents, resulting in anxiety or depression, and can have an impact on how families function together. National clinical guidelines recommend that therapists and doctors monitor the developmental progress of very premature babies in hospital and after discharge. Identifying those babies at greatest risk of disability at an early stage is necessary so that therapy interventions can be started and families can be supported. Importantly, developmental monitoring can also offer reassurance for families with babies at lower risk of developmental difficulties. To allow clinicians to better understand the impact of premature birth on longer-term health, the results of the developmental examination undertaken at two years of age should be recorded on the national database. Currently, there is variation in how developmental follow-up services are conducted in the NHS and a significant number of families do not attend appointments, resulting in an incomplete understanding of the consequences of premature birth. Additionally, parental and clinician priorities and experiences of developmental follow-up and discussions regarding potential risk of disability are not well explored. We do not know how parents interpret the information shared with them, or whether current services adequately address their most important concerns. To investigate these areas of uncertainty, my research aims to: 1. Understand and evaluate how parents of babies born very prematurely experience developmental follow-up. 2. Describe the current processes and content of developmental follow-up for babies born very prematurely in the UK. 3. Critically examine critically how clinicians share information with parents regarding developmental follow-up and the potential risks of disability. 4. Identify the key factors that facilitate and impede the effective delivery of developmental follow-up and drive parental satisfaction with this progress. 5. Use these findings to design and develop, with parents and clinicians, improvements aimed at optimising developmental follow-up and improving how clinicians share information with parents. My overall aim is to improve developmental follow-up for babies born very prematurely and their families. This will be addressed through the following phases of research: Phase 1: review the existing research literature to find out what has already been reported about how parents of babies born very prematurely experience developmental follow-up. Phase 2: undertake a national web-based survey of UK neonatal units to examine current clinical delivery of developmental follow-up services. Phase 3: study the process of developmental follow-up and the related experiences of parents and clinicians at three carefully chosen neonatal units, using methods including observation, interviews and review of clinical documents. Phase 4: analyse the findings and work with parents and clinicians to develop ways to improve developmental follow-up and effective information sharing. Parent and Public InvolvementParents of babies who were born very early and representative from TinyLives charity have advised on the design of this project and will continue to play a central role throughout the fellowship as part of my advisory team. I will work with them to co-produce improvements to developmental follow-up for premature infants and their families. Feedback of results The Tiny Lives and BLISS charities will help to facilitate the dissemination of my research findings to parents and the public. I will explore the best methods to use through discussions with my advisory group but anticipate that this may be through newsletters, presentations and social media. My findings will also be submitted for publication in scientific journals and presented at conferences and clinical study days.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH