Baby being examined by a doctor. Getty 1217384593.

This event took place on 29 June 2021.

Infection is a major cause of childhood illness and death from 0-5 years. In the early stages of illness it is difficult for parents and health professionals to know which children will become seriously ill. During an already challenging time, parents need to be able to recognise more serious symptoms as they face the decision of when to seek further help.

If health professionals (HPs) are to prevent avoidable child deaths, such as from illnesses like pneumonia and meningitis, there must be greater understanding of what influences the decisions parents and professionals make when a child is sick before hospital admission. 

Working in collaboration with parents and health professionals, the project team, led by Professor Sarah Neill from the University of Plymouth (formerly of the University of Northampton) aimed to identify all of these influences to inform the development of strategies that ensure children with serious infectious illness (SII) get appropriate timely help.

The national Before Arrival at Hospital (BeArH) Project, funded by the National Institute for Health and Care Research (NIHR), explored what happens to children under 5 years of age with serious infections before they are admitted to hospital. We wanted to find out what helps children get help quickly and what might slow this process down so that lessons could be learnt for the care of this group of children in the future.

The event brought together parent/carers, researchers, and health professionals to share the findings of the project for the first time, including the role each of these stakeholder groups played in the research and how you could get involved with future initiatives.

Who is this event for?
As well as parent/carers/families and other individuals involved in caring for children, this event was of most interest to those who research, study or work in sectors related to childcare; paediatrics; serious infectious illnesses; urgent and emergency care; primary care, charities associated with illness such as meningitis and sepsis; community nursing; social work; clinical skills training; as well as interested members of the public.



09:00 | Welcome and introduction by Professor Sarah Neill, Professor of Nursing and Chief Investigator for the BeArH project, University of Plymouth.
Welcome and a brief overview of the BeArH project, its focus and the project design.

09:10 | Case study – Losing Rubie: a parent’s worst nightmareby Kerry Fisher, parent.
One family’s experience of losing our child at just 6 weeks old. Did we do everything we could have done?

09:30 | How to work with researchers – a guide for parents (and researchers)by Jo Hughes, Founder of Mother’s Instinct Support Group, Co-Founder of the Harmed Patients Alliance, parent, and team member of the BeArH project.
Reflections on the experience and meaning of collaboration and co-production, as opposed to ‘mere’ involvement. Jo will highlight the importance of parental expertise in developing and ensuring a sensitive approach to parents being asked to take part in a project on a potentially distressing topic.

09:50 | Recruiting parents and professionals to qualitative research projects: tips for success and pitfalls to avoid by Natasha Bayes, BeArH project manager and researcher, University of Northampton.
Natasha will share the experiences of managing a complex qualitative project across multiple organisations, highlighting the challenges faced and the solutions identified. Lessons learnt for future research will be identified.

10:10 | Break

10:30 | BeArH project findings: the highlights by Professor Sarah Neill. Findings from the BeArH project centre around parents’ and health professionals’ experiences of navigating uncertain illness trajectories for young children with serious infectious illness. This paper will share the key factors influencing these trajectories, highlighting the impact on timing of admission to hospital.

10:50 | Children’s pre-hospital journeys: what we now know and its implications for cliniciansby Dr Poornima Pandey, BeArH team member and Consultant Paediatrician, Kettering General Hospital NHS Trust.
Child deaths are attributed, to some extent, by missed opportunities for early treatment. We know that this journey is further complicated by a plethora of barriers that includes the complexity of the services and the difficulty in recognition of the unwell child. Understanding these barriers will help steer further research in improving outcomes.
11:10 | Spotting the sick child: challenges for emergency care clinicians by Dr Damian Roland, BeArH team member and Consultant and Honorary Associate Professor in Paediatric Emergency Medicine, Leicester.
The impact of vaccinations and public health policies have had a dramatic effect on the incidence of true emergency presentations to hospitals by children. The vast majority of the 4 million children who are brought to urgent and emergency care settings in the England are discharged. This means that health care staff who are assessing the ‘poorly’ child must be on guard to determine who are truly ‘sick’. Damian highlights the key principles by which clinicians and families can work together to ensure those needing treatments receive them.

11:30 | The benefits of Charity expertise when delivering a research project. What did the BeArH project teach us?by Lucie Riches, Community Support Worker, Meningitis Now Charity and BeArH team member (recorded presentation).
Lucie will describe how charity partners were involved in the planning and delivery of the BeArH project and will discuss the opportunities that utilising this expertise offers to research projects. More specifically, it will explore how Meningitis Now has worked alongside the BeArH research team to support successful engagement with, and recruitment of, parents whose children have been affected by serious infectious illness.

11:50 | Parents navigating and accessing services for their child; the role of health literacyby Professor Lucy Bray, Professor of Child Health Literacy, Edge Hill University and BeArH team member.
Lucy will examine parents' health literacy in relation to their child's acute illness. Health literacy will be used as a framework to examine how parents' decisions to seek or delay seeking medical consultation was influenced by their access to information and their understanding of their child's symptoms and developing acute illness.

12:10 | Case study – '‘Trust your instincts’: one family’s experience of serious infectious illness (Charlie’s story)'by Rose Edmondson, parent (recorded presentation).
Rose will share the story of how she made the decision to call for an ambulance when her then-4 year old son contracted Meningitis B and septicaemia. She will share the signs that indicated something was seriously wrong with Charlie, the arguments she had with herself about contacting his GP and eventually the emergency services, and how sometimes a critical google search can be the difference between life and death.

12:30 | Round up and conclusion
This programme presents independent research funded by the National Institute for Health and Care Research (NIHR) under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0416-20011). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

BeArH project partners

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