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Improving Parental Engagement in Child Death Review

Trial Status: Open

This project aims to improve how bereaved parents and professionals work together to learn from child deaths.
Each year in England and Wales around 2800 children aged between 1 month and 18 years 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 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 important to guide the review. Parents should be informed of CDR meetings and asked if they have questions or information to share but this rarely happens in practice.
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 and palliative care to find out how they involve parents, advantages/difficulties and how they overcome these. We will interview around 25 professionals from 5 different sites, using Microsoft Teams.
We will interview bereaved parents about their CDR experiences, asking hospital bereavement teams and bereavement charities to tell parents about the project. We will interview around 20 parents, and also offer group sessions. Interviews will be either in person or remote.
After the research is finished we will arrange a meeting for bereaved families and CDR professionals to share the results and discuss ideas for improvement. We will work together to co-design tools to help involve parents in CDR including professional guidelines, family information, videos, podcasts and training materials.