Parents were often made to feel powerless, excluded from care, and criticised for using services early.
Healthcare professionals working more closely with the patients of sick children could lead to better outcomes, according to researchers.
The Before Arrival at Hospital (BeArH) project looked at the pre-hospital journeys of children later diagnosed with a serious infectious illness such as meningitis and sepsis.
Researchers at the University of Northampton and the University of Plymouth found that parents were often made to feel powerless, excluded from care, and criticised for using services in the early stages of the illness – all resulting in a future hesitancy to present.
A lack of continuity of the health professionals caring for individual children was also found to contribute to poor outcomes.
Researchers spoke with 40 parents and 30 health professionals, including hearing about the concerns raised by mothers whose children died from serious infectious illnesses such as sepsis after failures in the health system.
A perfect storm with tragic outcomes.
The final report of the research findings is available online, including a set of recommendations for healthcare providers.
Dr Sarah Neill chief investigator of the BeArH project, said; “During our research, we heard heart-breaking accounts from parents. I’d firstly like to express my thanks to them for their time and courage in sharing their stories, and to the health professionals for lending us their valuable insights.
“The findings from the BeArH research provide important insights into the complex interplay of factors that influence the timing of treatment for these serious infectious illnesses.
“Parents, already distressed when their child is unwell, feel disempowered in the face of the established knowledge of health professionals in an overstretched service. For both, that system can be a complicated terrain to navigate.
“This can lead to a ‘perfect storm’ with tragic outcomes, ironically in a system designed to stop this. We hope that the BeArH findings and follow-up investigations will help to reduce child deaths.”
