Chief Investigators: Professor Anne-Sophie Darlington, School of Health Sciences, University of Southampton and Dr Katherine Hunt, Senior Research Fellow, School of Health Sciences, University of Southampton

Team: Dr Vicky Payne, School of Health Sciences, University of Southampton, Miss Sarah Hodkinson, Associate Professor, Department of Music, University of Southampton, Professor Heather Gage, Professor of Health Economics, School of Biosciences and Medicine, University of Surrey, Dr Emily Cooper, Law and Policing, University of Central Lancashire, Dr Jamal Hossain, Lecturer in Applied Statistics, School of Health Sciences, University of Southampton, Dr Joanna Garstang, Consultant Community Paediatrician, University of Birmingham, Dr Nicola Speed, SUDC (UK), Miss Emma Kneebone, 2wish, Miss Stacey John, Forget Me Not Children's Hospice.

From: 01/12/2024 to: 30/11/2027

BACKGROUND

Around 3000 children die each year in England and Wales, and 30% of deaths represent infants and children who die unexpectedly or suddenly from accidents, suicide or unexplained deaths. Clear guidance and palliative care services exist for children who die of a life-limiting condition, including emotional and psychological support for their families, which extends into bereavement. However, clear guidance and care are not available for sudden and unexpected infant and child deaths, even though these are often the most tragic, brutal and shocking deaths. We do not know very much about what it is like for families, what care they need, what care is available, how they manage and cope in the longer term after their child’s death, and how professionals need to be supported after often traumatic experiences.

PLAN

We recently brought together organisations and professionals who care for families when a child has died suddenly (e.g., health professionals, fire department, police, hospices, charities, schools) to commit to working together to improve care for these families, and improve training and support for professionals. This network helped develop this project. We want to investigate these aspects (organised in Work Packages -WPs), focusing on different questions:

WP1: What care is available for these families – around the time of the death and into bereavement, and where do children die. We will investigate this through 1) past research, and 2) existing database with information on child deaths.

WP2: Which services are available to families and who provides that care, and what are the experiences and needs of the professionals providing that care? We will 1) interview professionals who carry out the Child Death Review and 2) interview professionals who provide care in different settings.

WP3: What are the experiences of families, what care helped and what do they need? And what are the long-term consequences for parents, such as grief and depression and physical health? - we will investigate this by 1) interviewing bereaved parents about their experiences, and 2) asking bereaved parents to complete a questionnaire about grief, depression and quality of care.

WP4: What recommendations around care and support should we make? We will use the information from the previous work packages to develop recommendations on how to improve care around the time of the death and in bereavement. We will agree what the needs are for training and supporting professionals.

INVOLVING FAMILIES We will involve bereaved parents though the organisations included in our network. We have two parent and two other lay members as co-applicants on the study. A formal parent advisory group will be set up to help us with research questions, materials, design of the study, recruiting parents, content, social media presence and study branding, and dissemination. We will also work with a team of parent investigators who will provide guidance to the researcher and support participants during interviews.

DISSEMINATION

We will produce scientific papers, develop recommendations for care and maintain a network of parents and professionals to support the project. We will create national awareness of the needs of these families and work with a policy engagement organisation to influence policy and change practice. We will produce newsletters, social media posts, and result postcards to update families and the wider network.