Before Arrival at Hospital (BeArH)
Factors affecting timing of admission to hospital for children with serious infectious illness.
Infection is a major cause of childhood deaths in the UK and globally, particularly in the first five years of life, yet little is known about factors influencing children’s journeys to hospital with serious infectious illness.
Many of these deaths are avoidable as infections such as pneumonia and meningococcal disease are amenable to treatment, if provided in time. According to Health Protection Agency Data, infectious illness in childhood constitutes approximately 50% of children’s GP consultations and 12% of children’s hospitalisations.
It is often difficult for healthcare professionals to determine whether or not a child is seriously ill at first presentation consequently it should not be surprising that parents also find it difficult to interpret symptoms and know when to consult.
Given the lack of research exploring the pre-hospital pathways of children with infectious illness, identification of all modifiable steps in the child’s journey to hospital admission is urgently needed so that evidence based solutions can be developed.
Effective interventions will reduce NHS costs associated with treatment, hospital admissions and litigation (the cost of failure or delay in diagnosis was estimated to be over £20m in legal settlements during 1999-2011).
BeArH plans 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.
The project will be in two stages and two geographical areas (a District General Hospital and a Teaching Hospital and their catchment areas). This will be a collaborative project with parents and key stakeholders from each of the NHS organisations and Universities involved. Parents from a relevant NGO and an existing parent panel for a related project have been consulted on the design of the project to date and will be involved at each stage of the project.
Stage 1: Documentary analysis
This stage will involve anonymised documentary analysis of existing evidence: child death reviews, critical incident reports and related documentation for all child deaths under five years of age in two study areas; hospital and ambulance data on service use; and a mapping exercise to detail services available to families with a sick child in each area.
Stage 2: Data collection and analysis
2a: Individual children’s journeys to hospital admission between November 2017 and March 2018
This will focus on the child’s journey from becoming ill to being admitted to hospital with a serious infectious illness. Parents will be recruited in the hospital setting no less than 48 hours post-admission, then interviewed at home after discharge or death of the child. Parents will be asked to identify the health professionals involved in their child’s pre-hospital care. Parents will be asked for permission for the researchers to contact the professionals involved to interview them about their involvement in the child’s care.
2b: Past experiences of parents and professionals of children’s journeys
This will involve focus groups with parents with at least one child who has had a serious infectious illness and, separately with first contact health professionals with experience of caring for such children, between 2011 and 2016. Parents will be recruited through our charity partners and professionals will be 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
- 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.
Principle Investigator: Associate Professor Sarah Neill, University of Northampton
- Professor Bernie Carter, Edge Hill University and Alder Hey Children’s Hospital
- Professor Enitan Carroll, Alder Hey Children’s Hospital and University of Liverpool
- Dr Amardeep Heer, Research lead and GP, Lakeside Healthcare Corby
- Dr Damian Roland, Paediatric Emergency Care Consultant, Leicester Royal Infirmary and University of Leicester
- Dr Poornima Pandey, Paediatrician, Kettering General Hospital Foundation Trust
- Sue Palmer-Hill, Research and Development Manager, Northamptonshire Healthcare Foundation Trust
- Joanne Hughes, founder Mother’s Instinct
- Lucie Riches, Community Support Officer, Meningitis Now
The project has the support of the UK Sepsis Trust, Meningitis Now, the Meningitis Research Foundation and the Encephalitis Society.