Ground-breaking research project calls for better support for families of children who die suddenly

We’re thrilled that Shooting Star are collaborating with experts from the University of Southampton on a research project which will investigate and make recommendations to improve support and care for those experiencing sudden and unexpected death in infancy and childhood (SUDIC).

QUINTET, which is the first of its kind, will also involve the universities of Central Lancashire, Birmingham and Surrey, as well as Forget Me Not Children’s Hospice, 2Wish and SUDC UK. The £1.2m National Institute for Health and Care Research (NIHR) funded project, will see researchers running a national survey of bereaved parents – the largest ever conducted in England. The team are interviewing health professionals and other caregivers, and mapping what is available now. Sadly in several places around the country, support is non-existent. This research will recommend vital changes to significantly improve services in the future.

SUDIC refers to deaths not expected within the 24-hour period before they occur. This can include unexplained deaths, unintended injury, suicide, sudden asthma or cardiac death, or death relating to a criminal act – all often shocking and tragic events, causing great trauma for those involved. In November 2023 we launched our specialist bereavement service to ensure every family, including those facing the unimaginable grief that comes with losing a child suddenly or unexpectedly, can access the expert bereavement care we provide*. 207 families accessed this care in 2024/25, including 74 families whose child died suddenly or unexpectedly and 40 babies who died shortly after birth.

Shooting Star is one of only two hospices in the country who have created a specialist bereavement service for families whose child has died suddenly or unexpectedly. Seeing our trailblazing work with these families, the University of Southampton reached out to Sarah Hodkinson (Head of Psychosocial Services at Shooting Star and Principal Teaching Fellow at the University of Southampton) as a lead expert, asking for the support of Shooting Star to steer this research and implement change nationally.

Sarah Hodkinson said: “We’re honoured to be working alongside the University of Southampton on the three-year QUINTET study, which will aim to make much-needed recommendations for change in 2027, so help is not withheld from affected families. The project is shining a light on the shocking health inequality families of children who die suddenly currently face and the immense impact on each member of the family’s mental health. However, through our specialist bereavement service, we’ve seen first-hand that when families are provided with the right support at the right time, they rebuild their strength, find hope for the future, and flourish. 

“My main role as a co-investigator in the research team is to support parents to steer the direction of this research. I chair the parent advisory group, which includes 20 parents from across the country, sharing with us what they need and shaping our methodology. We’ve also been able to provide insightful learning from our ‘frontline’ experience supporting families. Our work and how we have partnered with child death review professionals, is acting as a model, showing the vital outcomes that are achieved for families in need. With some eminent individuals on the research team, it really is a ground-breaking project and means we will have robust scientific evidence to demonstrate the huge importance of providing bereavement care to SUDIC families, and why others should mirror our specialist bereavement support across the country.”

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.”

With 9% of the child deaths in England and Wales occurring in Surrey, south-west London and north-west London, our specialist bereavement service has never been more needed. Please consider making a donation to support our vital bereavement care.

*Currently we are unable to help where deaths are caused by suicide, homicide and other circumstances where an arrest has been made.