The Before Arrival at Hospital (BeArH) project aimed 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 (SII) in Leicestershire and North Northamptonshire.
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 a 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 an 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).
The primary outcome of this project is a grounded theory which:
- explains how parents and professionals navigate young children’s uncertain illness trajectories from the beginning of the illness, through contacts with health services to admission to hospital.
Key findings include that:
- Parents feel powerlessness and a loss of control over their child’s health and their access to treatment.
- Parents often report feeling criticised for using services in the early stages of the illness. This can lead to delay in seeking help again.
- Parents and health professionals both miss signs and markers of serious illness.
- The health system can be complex for both professionals and parents.
- There is a lack of continuity of the health professionals caring for individual children – few see the same professional when seeking help again.
- Risk averse agencies refer more suspected cases to hospitals, adding extra stress in the system. One emergency doctor quoted in the report commented: “We have made the haystack bigger. There is still only one needle, but the haystack is enormous.”
The report outlines the need for further research into parents’ consultations with health professionals to identify causes of perceived criticism.
The findings suggest that there is a need for research to explore how best to provide information about childhood illness (such as a safety-netting app). Service complexity needs to be reduced as does the continuity of health professionals involved in the care of each child with a serious infectious illness.
For more detail please read our pre-print paper.