Title: Improving Parental Engagement in Child Death Review
Funder: Department of Health and Social Care

Abstract: Research questions What are parents experiences of involvement in the Child Death Review (CDR) process? What do professionals consider are the barriers and enablers to parental CDR involvement? How can we better support parental CDR involvement? Background The UK has higher child mortality compared to other similarly developed countries, and has recently invested in a National Child Mortality Database to collate learning from child deaths. CDR is the process of studying child deaths in detail, to identify full causes and risk factors for death and identify learning to prevent future deaths. Recent statutory guidance requires that bereaved parents are informed of CDR and invited to contribute. Parents do not attend CDR meetings but they have key knowledge about their child s healthcare journey which needs to be shared with professionals to inform the process. Healthcare trusts are only just implementing CDR, and it is not known yet how best to involve parents. Aim To understand existing practice, and explore the views of parents and health professionals involved in CDR. To develop using co-design with clinicians and parents a best-practice toolkit for parental involvement in post-neonatal CDR. Objectives 1. To survey and interview CDR professionals to establish current parental CDR involvement and learn of experiences, barriers and facilitators. 2. To interview bereaved parents in-depth about CDR experiences, barriers and facilitators. 3. To co-design best-practice tools for parental involvement in CDR. Methods We will conduct a survey of all national paediatric intensive care units, hospices and palliative care teams for details of current parental CDR involvement. We will purposively select 5 teams and interview in-depth 5 different professionals within each team (25 total), to explore experiences in greater detail. Using Bereavement Support Organisations and healthcare trusts, we will invite parents whose child died since 2021 to take part in in-depth interviews and focus groups (20 total) about their CDR experiences. We will hold co-design workshops with bereaved parents, healthcare professionals and Bereavement Support Organisations, presenting the findings from interviews and surveys. Parents and professionals will identify up to 5 key areas for improvement, then form small working groups to designing tools together (eg template documents, guidance, podcasts, leaflets) to support parental involvement. Timelines This is a 15 month study, with ethical/R&D approvals in place prior to start. Months: 1-5: professional survey 3-7: professional interviews 1-7: parents interviews/focus groups 8-10 results synthesis, workshop preparation 11-14: co-design workshops, toolkit production 15: dissemination Impact and dissemination The study will lead to the development of a best-practice toolkit to support parental CDR involvement. This should improve the quality of CDR, increasing the learning from deaths which can improve healthcare services and inform public health strategies, potentially preventing future child deaths and reducing UK child mortality. The toolkit should help improve information and support provided to bereaved parents. The toolkit will be available from a free to use website. It will be disseminated through professional networks such as the Royal College of Paediatrics and Child Health, the National Child Mortality Database and Bereavement Support Organisations.

Lay abstract: Aims The aims of this project are: To learn about bereaved parents and professionals experiences of Child Death Review. For bereaved parents to work with professionals to develop tools (eg leaflets, podcasts) to help involve parents in Child Death Review for children aged over 1 month. The project will have 3 different parts. Background The death of a child is the worst thing that can happen to any parent. Each year in England and Wales around 2800 children aged over 1 month die. Most parents want to know why their child died and this can be an important part of grieving. Child Death Review (CDR) is when doctors and other health professionals study deaths in detail, to understand why children die and help stop other children from dying in the future. Although parents do not attend review meetings their knowledge of their child s life, illness, and treatment is really important to help with the review. Since 2019 healthcare professionals should be telling parents about review meetings and asking if they have questions or information to share. Unfortunately, this often does not happen and this means that less is learned from deaths, and parents may not have their questions answered. Parts of the project We will ask all English children s intensive care units and palliative care services to complete a short questionnaire. We will find out what they are doing to support bereaved parents to involve them in death reviews. We will interview CDR professionals from intensive care and palliative care to find out how they involve parents in death reviews, the advantages and difficulties and how they overcome these. We will interview around 20 professionals from 5 different hospitals or services, using video calls or telephone. We will interview bereaved parents about their experiences of CDR. We will ask hospital bereavement teams and bereavement charities to tell parents about the project. We will interview around 20 parents, and will also offer group sessions if parents prefer. Interviews will be either in person, by video call or telephone. We will use interpreters to make sure that non-English speaking families can take part. We will arrange a meeting for bereaved families and CDR professionals where we will share the results of the questionnaire and interviews. We will look at the main areas for improvement. We will set up groups where parents, professionals and researchers will develop tools including professional guidelines, information for families, videos, podcasts and training materials. We will check the tools with parents and professionals at a meeting a few weeks later. We will then put the toolkit on a free website so all professionals can use it, and promote the toolkit widely through professional networks.

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE