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Researchers call for better support for families of children who die suddenly
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Blurred image of a young man and woman hugging each other in emotional support
Experts from the University of Southampton 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.
“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.
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.
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https://www.southampton.ac.uk/news/2025/04/researchers-call-for-better-support-for-families-of-children-who-die-suddenly.page

研究人员呼吁更好地支持突然死亡的儿童家庭
出版：Nan未定义的Nan
一个年轻男人和女人在情感支持中互相拥抱的形象模糊
南安普敦大学的专家强调，迫切需要改善经历儿童意外死亡的家庭的实践和心理支持。
在英格兰和威尔士，约有3,000名儿童死亡，其中30％是婴儿和儿童，他们的死亡是意外且突然的。
研究人员说，对家庭和专业护理人员的现有支持的可用性和质量差异很大。
他们与上议院成员伊洛拉·芬利（Ilora Finlay）一起为《英国医学杂志》（BMJ）撰写了社论，指出了对更基于证据的方法的迫切需求。
BMJ文章的主要作者，南安普敦大学的凯瑟琳·亨特博士（Katherine Hunt）博士说：“在孩子的突然和创伤之后，任何家庭都不应孤单地挣扎。在这些毁灭性损失之后，我们照顾家庭的方式是对我们社会同情的一场想念。
“家庭在死亡时期以及最初的死亡调查期间需要立即护理和支持。护理应是敏感和融合的，以及不同服务之间的联络，例如紧急服务，医务人员，儿童死亡审查专业人员和丧亲团队。可悲的是，在该国的大多数地区，目前都缺乏这一点。”
与BMJ文章相吻合，该研究团队正在推出一个新的120万英镑的国家卫生与护理研究所（NIHR）资助的项目，称为“ Quintet”。
这项研究是第一个此类研究，由南安普敦大学（University of Southampton）领导，还涉及中央兰开夏郡（Lancashire），伯明翰和萨里大学（Birmingham and Surrey）的大学，以及射击明星儿童招待所，而不是孩子们的临终关怀医院。 其他慈善合作伙伴是2Wish和SUDC UK。 五重奏将调查并提出建议，以改善在婴儿期和童年时期突然和意外死亡的人（Sudic）的支持和护理。
刺激性是指在发生前的24小时内预期的死亡。 这些情况可能包括诸如意外伤害，自杀，心脏死亡或与犯罪行为有关的死亡 - 所有这些情况经常令人震惊和悲惨的事件，对参与人员造成了极大的创伤。
对于死于生命状况的儿童，包括对家人的情感和心理支持，这是明确的指导和姑息治疗服务，但在突然和意外的儿童死亡的情况下，这并不能自动提供。
在这项研究中，研究人员将对丧亲的父母进行全国调查，这是有史以来在英格兰进行的最大的调查。 他们还将与卫生专业人员和其他护理人员交谈，并绘制现在可用的内容，以帮助他们推荐重要的变化，以在将来显着改善服务。
五重奏研究的共同领导研究者，南安普敦大学儿童和家庭心理健康教授安妮·索普·达林顿（Anne-Sophie Darlington）评论：“当他们经历了孩子突然死亡的深处创伤时，人们对家庭非常复杂的需求的理解几乎没有理解，这对于他们的护理需求以及对他们的长期造成了深深的影响，这是对他们的重要范围的重要证据。 需要支持的人。”
中央兰开夏大学（University of Central Lancashire）的项目共同评论者兼高级讲师Emily Cooper博士说：“由于遗传性线粒体状况（PPA2缺乏症）导致Cardiac死亡，我们在2021年悲惨地失去了儿子亚历山大（Alexander），并在2024年突然出乎意料地失去了伊莎贝尔（Isabelle）。
“在与其他亲人的家庭见面后，我们感到震惊地发现，对那些面临这种损失的人的支持是多么不足和不一致。这项研究将在帮助像我们这样的家庭获得所需的照顾方面进行变革，并为支持我们的专业人士提供急需的框架。”
三年的五重奏研究将旨在提出2027年变革的建议，以帮助受影响的家庭。
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