Involving Parents and Staff in Learning from Child Deaths
Research type
Research Study
Full title
Improving Parental Engagement in Child Death Review
IRAS ID
316560
Contact name
Joanna Garstang
Contact email
Sponsor organisation
Birmingham Community Healthcare NHS Trust
Duration of Study in the UK
1 years, 2 months, 30 days
Research summary
Research Summary:
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.Summary of Results:
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 healthcare 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. Each family should have a bereavement keyworker to support them.
The aim of this project was to bring together bereaved parents and healthcare professionals to create solutions to help support parents to contribute to CDR.
This was achieved firstly by interviewing 24 bereaved parents and 21 healthcare professionals about their experiences of CDR. We found key moments for parents’ CDR journeys, these were: learning of CDR for the first time, being asked to contribute information for CDR, knowing the date of CDR meetings and receiving feedback.
Parents said that good communication, bereavement care and support were very important to them.
We then held workshops with bereaved parents, healthcare professionals and bereavement support organisations, where we shared these experiences. Everyone agreed that keyworkers were important to support families but sometimes keyworkers did not understand about CDR. We set-up small groups of parents, professionals, and researchers to work on solutions together.
We developed training videos for keyworkers, a standardised pathway for communicating with parents including letters, an easy read leaflet and feedback forms, and an animation for CDR professionals explaining why parents should be involved in CDR. These resources are free to use and will be available from the National Child Mortality Database website.REC name
West Midlands - South Birmingham Research Ethics Committee
REC reference
22/WM/0172
Date of REC Opinion
27 Sep 2022
REC opinion
Further Information Favourable Opinion