Researchers call for better support for families of children who die suddenly

A new study is seeking to improve care and support for families experiencing the unexpected death of a child.

Around 3,000 children die each year in England and Wales. 30 percent are infants and children whose deaths are unexpected and sudden.

Experts from the University of Southampton (UoS) are highlighting an urgent need to improve practical and psychological support for families.

They have written an editorial with Baroness Ilora Finlay, a member of the House of Lords. This has been published in the British Medical Journal (BMJ).

The researchers are also launching a first of its kind study to develop recommendations to help affected families.

Differences across the country

The editorial points to a pressing need for evidence based approaches to support families.

The researchers say the availability and quality of existing support varies substantially and unfairly. This is true of the support provided to both families and professional caregivers.

“No family should be left to struggle alone after the sudden and traumatic death of their child”, said Dr Katherine Hunt. She is the lead author of the BMJ article. Dr Hunt added:

“The way we care for families in the aftermath of these devastating losses is a litmus test of the compassion of our society.

“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.”

Advocating change

The research team have been awarded £1.2m from the National Institute for Health and Care Research (NIHR) for a project called ‘QUINTET’.

The study is the first of its kind. Led by UoS, it involves the universities of Central Lancashire, Birmingham and Surrey. There are also charity partners. They are Shooting Star Children’s Hospice, Forget Me Not Children’s Hospice, 2Wish and SUDC UK.

QUINTET will investigate what support is available for those experiencing sudden and unexpected death in infancy and childhood (SUDIC). The researchers will then make recommendations to improve support and care.

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. They are 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. This includes emotional and psychological support for their families. However, this is not automatically available in the case of sudden and unexpected child deaths.

National research

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 to map what is available now. This will help them recommend vital changes to significantly improve services in the future.

Anne-Sophie Darlington, Professor of Child and Family Psychological Health at UoS, will co-lead the QUINTET study. She is part of the NIHR Southampton Biomedical Research Centre’s Perioperative and Critical Care theme. Prof Darlington said:  

“Surprisingly little is understood about the very complex needs of families when they experience the deep trauma of the sudden death of a child. 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 from 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. It will provide a much-needed framework for professionals who support us.”

The three year QUINTET study will make recommendations to help affected families in 2027.