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Many professionals do not know how best to involve parents in Child Death Review.  This toolkit was developed by researchers at the University of Birmingham, University of Bristol along with bereaved parents and professionals working in Child Death Review as part of the ‘Involving parents and staff in learning from Child Deaths’ research project.

This Child Death Review Toolkit is designed for use by keyworkers. It is designed primarily for families after an expected child death; for example, when a child dies in a hospital, a hospice or at home with palliative care. Many aspects of the toolkit could also be used to support communication with families after a sudden child death where there is a Joint Agency Response.

Why should parents be involved in Child Death Review?

Understanding why their child died is a key need for bereaved parents, making sense of loss is an important part of grieving and those who cannot do so may have more profound grief. Even when the diagnosis is established long before death, bereaved parents may still have questions about their child’s illness and treatment.

Child Death Review addresses this need for answers by aiming to understand the full reasons for each child’s death, learning from these to prevent future deaths alongside supporting families.

The video below explains why involving parents in Child Death Review is important.

The Process for involving parents in Child Death Review

[Content needed]

Keyworkers and Child Death Review

All bereaved families should have a keyworker allocated to them.  This keyworker should be the single point of contact between the parents and the Child Death Review process, as well as signposting them to bereavement support.  Keyworkers may be known to families prior to death, for example as part of a palliative care team, or only meet the family after the death such as a hospital bereavement nurse.

It is important that keyworkers understand their role in Child Death Review as well as bereavement support.  The video presentation below explains the importance of keyworkers in Child Death Review.

[VIDEO  – role of keyworker in the Child Death Review process]

This document is a formal role description for a keyworker.

Child Bereavement UK offer Child Death Review and bereavement support training for keyworkers

The video below explains all about the Child Death Review Toolkit.

[VIDEO – Keyworker Tools]

This flow chart illustrates suggested contact with parents after a child death.

There are several template letters to support communication and feedback with families. These are provided in word document format for local editing.

The feedback form can be completed by parents themselves or by the keyworker in discussion with parents.

The easy read leaflet has been designed to help parents who may have a learning disability, it could also be used for parents with limited English. Ideally, it should be professionally printed in colour.

[EASY READ LEAFLET]

The contact tracker can be used by the keyworker as a prompt for when to get in touch with families. It is available in pdf and word formats.

Further information

There will be launch events to share the toolkit and papers published in medical journals with detailed results from the ‘Involving parents and staff in learning from Child Deaths’ research project. Links to these resources will be added once they are available.

Feedback

If you have any feedback about this toolkit or the research project please contact ncmd-programme@bristol.ac.uk.

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