Title: Understanding the epidemiology, experiences and variation in the transition from neonatal to paediatric care: a mixed methods study
Funder: Department of Health and Social Care

Abstract: Background After birth, around one in seven babies are admitted for specialist neonatal care. The number of babies being admitted for neonatal care is increasing, in part due to the increase in survival of the most vulnerable babies who in the past did not survive. However, many of these children have lifelong health concerns requiring admission to paediatric care or paediatric intensive care units (PICU). There is limited information about this population of children. The information about paediatric care which is provided at discharge from neonatal care is inconsistent across the country and there is no information about how parents can be supported if their child requires an admission to PICU. Aims and objectives This research project has three over-arching research aims: To describe and understand the epidemiology of children who receive neonatal and paediatric care To understand how service provision and the transition between neonatal and paediatric care varies geographically To investigate parents' experiences of admission to PICU and the differences between neonatal and paediatric careMethods This study uses a mixed methods approach to address each of the three research aims: Study 1: Data will be linked from the National Neonatal Research Database; Paediatric Intensive Care Audit Network and Hospital Episodes Statistics. All admissions for neonatal care in England and Wales from 1/1/2013 will be included. Subgroups of children at risk of admission to the different types of paediatric care will be identified using a statistical approach such as Latent Class Analysis. Study 2: A brief survey will be carried out in the neonatal care community to identify different approaches to neonatal discharge. This will identify healthcare professionals to interview about the different styles of neonatal discharge and community care offered to parents. We will interview ~30 healthcare professionals from a diverse range of backgrounds and neonatal units. The interviews will be analysed using a thematic approach. Study 3: Approximately 30 parents who experienced >1 month in neonatal care followed by an admission to PICU will be recruited to share their experiences from neonatal discharge to PICU admission. Recruitment will be supported by charities and family liaison nurses. The interviews will be recorded and used as part of a learning resource, if consent is given. The interviews will be analysed using a thematic approach. Anticipated impact and dissemination The impact of this work will be in the following ways: Working with clinicians and healthcare professionals to inform the information and support provided to parents and families when their child is discharged from neonatal care Providing support for parents when their child is admitted to PICU after requiring neonatal care. Providing information about the epidemiology of children who require neonatal and paediatric care to inform the planning and organisation of healthcare services. Currently no information is known about the care that these children require.The dissemination of this work will be in following ways: Academic articles HealthTalk module or online interactive learning resource Information for parents (e.g. leaflets or website) Giving talks within the NHS

Lay abstract: What is this research about? Following birth, around one in seven babies are admitted for specialist neonatal care in the UK. Admission rates to neonatal care have increased in the last few years, partly due to improved survival of the most vulnerable babies, particularly those born very prematurely or those with serious health problems. Survival of these babies has become increasingly normalised by clinicians and families, but the impact of their health and the care received immediately after birth can be lifelong. There has also been an increase in admissions to paediatric intensive care units (PICU) in the last ten to fifteen years. Many admissions relate to children who received neonatal care immediately after birth, although the exact number is not known. Very little is known about the transition between neonatal and paediatric care including which children are likely to experience both types of care, and how clinical services, parents and professionals manage the transition. What are the aims of this research? To understand how many children who receive neonatal care also go on to need paediatric care when they are older To understand how different hospital and organisations provide support and resources during the transition from neonatal care to paediatric care To investigate the impact of PICU admission on families and understand how to provide them with the support they needWhy is this important? Currently we do not know how many children who receive neonatal care go on to need paediatric care. We need this information to help plan clinical services but also to advise parents about how likely it is that their child will need hospital care in the future. This information will aid the conversations between clinicians and parents. We do not understand what happens when families and their children move between neonatal care and paediatric care and whether they are adequately supported. We know that families find admission to both neonatal and paediatric care incredibly stressful, and many develop mental health problems, but we do not know what support they need. How is this research being conducted? This study will use two approaches: an analysis from information recorded in medical notes and interviews with professionals and families. The information from medical care received in neonatal units, paediatric units and hospitals has already been collected. There is known as an analysis of 'routine data' and we will ask permission of the people who provided the data (the hospitals) to use it for this study. We will interview families and healthcare professionals about the transition from neonatal care to paediatric care and we will speak to families about their PICU experiences. These conversations will be audio- or video- recorded and will require the explicit consent of the people involved in them. How are parents and families involved in this work? Parents helped to develop this research project, and will continue to be involved throughout. The idea for this project was conceived during a meeting where several parents commented that they thought discharge from neonatal care would be the last interaction with acute hospital care for their child. This was regularly not the case as many of their children were subsequently admitted to paediatric care. How will this work be disseminated? This work will be published in traditional academic journals. We will also produce magazine articles, short podcasts and infographics to provide information in an easily accessible format. We will use social media to promote our work, and ensure that it is promoted within the general public as well academic and clinical communities.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: REPRODUCTIVE HEALTH AND CHILDBIRTH