Title: Before Arrival at Hospital: Factors affecting timing of hospitalisation for children with serious infectious illness. An exploratory study. (The BeArH project).
Funder: Department of Health and Social Care

Abstract: Background Infection is a major cause of childhood deaths in the UK and globally, particularly in the first 5 years of life, yet little is known about factors influencing children s journeys to hospital with serious infectious illness (SII). Many of these deaths are avoidable as infections such as pneumonia and meningococcal disease are amenable to treatment, if provided in time [5]. Given the lack of research exploring the pre-hospital pathways of children with SII, identification of all modifiable steps in the child s journey to hospital admission is urgently needed so that evidence based solutions can be developed. Aim To retrospectively identify organizational and environmental factors and individual child, family and professional factors affecting timing of admission to hospital for children with serious infectious illness in Leicestershire and East Northamptonshire. Methods A mixed methods grounded theory design [6-9] will be used in two stages and two geographical areas (a District General Hospital and a Teaching Hospital and their catchment areas). Stage 1: Anonymised documentary analysis of existing evidence: child death reviews, critical incident reports for all child deaths under 5 years of age in two study areas; hospital and ambulance data on service use; and a mapping exercise to detail services for sick children in each area. Stage 2a: Individual children s journeys to hospital admission between November 2017 and March 2018 inclusive focusing on the child s journey from becoming ill to being admitted to hospital with a SII. Parents will be recruited in the hospital setting no less than 48 hours post-admission, then interviewed after discharge or death of the child. Parents will be asked to identify health professionals involved in their child s pre-hospital care and asked for permission for the researchers to contact these professionals to interview them about their involvement in the child s care. Stage 2b: Past experiences of parents and professionals of children s journeys. This stage will focus on parents who have had at least one child who has had a SII and health professionals who have had experience of caring for such children in first contact services between 2011 and 2016. Focus groups will be conducted with parents recruited through our charity partners and separately, with professionals recruited through the Clinical Research Network, local medical committees and snowballing through existing contacts. Data from Stage 1, 2a and 2b will be subject to constant comparative analysis in line with grounded theory methodology. Cycles of data collection and analysis will be used to generate an emerging theory at which point existing knowledge will be examined for its explanatory contribution. The result will be a grounded theory explaining the positive and negative factors influencing children s journeys to hospital when they have SII. Potential benefits to patients and the NHS The primary outcome will be a grounded theory which: identifies child, family and professional factors affecting the timing of admission to hospital for children with SII in two contrasting areas; explains family and professional decision making for children with SII pre-hospitalisation; identifies human factors influencing families and professionals in primary/secondary first contact health services for children with SII; and identifies environmental and organisational modifiable factors. These findings will form the basis for intervention design and the feasibility study to follow, designed to optimise the timing of presentation to hospital of children with SII. Effective interventions would be expected to reduce morbidity, mortality, family distress, NHS costs associated with treatment, hospital admissions and litigation (estimated cost of failure/delay in diagnosis was over &pound;20m in legal settlements in the 12 years up to 2011 [5]). Supported by the UK Sepsis Trust, Meningitis Now, the Meningitis Research Foundation and the Encephalitis Society.

Lay abstract: Infection is a major cause of childhood illness and death, in the UK and globally, in the first five years of life. In the early stages of illness it is difficult to know which children will become seriously ill. However, in the UK parents are expected to use the right health service for the right level of illness, putting pressure on parents to make the right decision about when to access health services. If health professionals are to prevent more avoidable child deaths, we need to know more about what affects the decisions that parents and professionals make when a child is sick before they are admitted to hospital. Working with parents, our study aims to identify all the things that influence decisions that parents and professionals make so that we can develop strategies to try and make sure that children get help quickly when they have serious infectious illnesses. We plan to interview parents whose child has been in hospital with a serious infectious illness and the health professionals that the parents sought help from before their child was admitted. The study sites will be a district general hospital and a teaching hospital and their catchment areas. We will gather existing evidence, in each area, about local services, levels of service use and learning points from investigations concerning children with serious infectious illness. Putting all of this information together will help us to identify what needs to change to help children with a serious infectious illness obtain the right treatment as quickly as possible. Together with parents, we will use the findings to develop another project to plan the changes to the way that children with serious infectious illness are managed before they get to hospital. Supported by UK Sepsis Trust, Encephalitis Society, Meningitis Now and Meningitis Research Foundation.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.3 MANAGEMENT AND DECISION MAKING
Health categories: INFECTION