The University’s Dr Emily Cooper is using her personal trauma to assist this study
Experts involving a University of Central Lancashire* academic are highlighting an urgent need to improve practical and psychological support for families who experience the unexpected death of a child.
Around 3,000 children die each year in England and Wales of which 30 percent are infants and children whose deaths are unexpected and sudden.
The researchers say the availability and quality of existing support for both families and professional caregivers varies substantially and unfairly.
Together with member of the House of Lords, Baroness Ilora Finlay, they have written an editorial for the British Medical Journal (BMJ), pointing to a pressing need for a more evidence-based approach.
Lead author of the BMJ article, Dr Katherine Hunt from the University of Southampton, comments: “No family should be left to struggle alone after the sudden and traumatic death of their child. The way we care for families in the aftermath of these devastating losses is a litmus test of the compassion of our society.
"Upon meeting other bereaved families, we were shocked to discover just how inadequate and inconsistent the support is for those facing such a loss"
— Dr Emily Cooper, project co-investigator and Senior Lecturer in Policing and Criminal Investigation at the University of Central Lancashire
“Families need immediate care and support around the time of the death and beyond the initial period of death investigation. Care should be sensitive and integrated, with liaison between different services, such as emergency services, medical staff, child death review professionals and bereavement teams. Sadly, in most areas of the country this is currently lacking.”
Coinciding with the BMJ article, the research team is launching a new £1.2m National Institute for Health and Care Research (NIHR) funded project called ‘QUINTET’.
The study, the first of its kind, is led by the University of Southampton and also involves the universities of Central Lancashire, Birmingham and Surrey, along with Shooting Star Children’s Hospices and Forget Me Not Children’s Hospice. Other charity partners are 2Wish and SUDC UK. QUINTET will investigate and make recommendations to improve support and care for those experiencing sudden and unexpected death in infancy and childhood (SUDIC).
SUDIC refers to deaths not expected within the 24-hour period before they occur. These could include such circumstances as, unintended injury, suicide, sudden cardiac death, or death relating to a criminal act – all often shocking and tragic events, causing great trauma for those involved.
Clear guidance and palliative care services exist for children who die of a life-limiting condition, including emotional and psychological support for their families, but this is not automatically available in the case of sudden and unexpected child deaths.
"Care should be sensitive and integrated, with liaison between different services, such as emergency services, medical staff, child death review professionals and bereavement teams. Sadly, in most areas of the country this is currently lacking"
— Lead author Dr Katherine Hunt, from the University of Southampton
For the study, researchers will run a national survey of bereaved parents – the largest ever conducted in England. They will also speak to health professionals and other caregivers, mapping what is available now, to help them recommend vital changes to significantly improve services in the future.
Co-Lead investigator for the QUINTET study, Anne-Sophie Darlington, Professor of Child and Family Psychological Health at the University of Southampton, comments: “Surprisingly little is understood about the very complex needs of families when they experience the deep trauma of the sudden death of a child and it is crucial that we gain evidence about their care needs and what helps them cope in the longer term. These kinds of deaths are very traumatic for families and also deeply affect professionals involved, both of whom need support.”
Dr Emily Cooper, project co-investigator and Senior Lecturer in Policing and Criminal Investigation at the University of Central Lancashire, said: “We tragically lost our son Alexander in 2021 and daughter Isabelle in 2024 suddenly and unexpectedly due to a genetic mitochondrial condition (PPA2 deficiency) which causes sudden cardiac death.
“Upon meeting other bereaved families, we were shocked to discover just how inadequate and inconsistent the support is for those facing such a loss. The study will be transformational in helping families like ours receive the care they need and provide a much-needed framework for professionals who support us.”
The three-year QUINTET study will aim to make recommendations for change in 2027 to help affected families.
*University of Central Lancashire is proudly changing to University of Lancashire