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Gathering feedback from families and carers when a child or young person dies – resource launched

23rd September 2019

Gathering feedback from families and carers when a child or young person dies is a new resource designed to help support professionals in their work with bereaved families and carers. It sets out the key principles of ideal bereavement care, provides guidance as to how and when feedback may be collected and by whom. Importantly, it includes the Childhood Bereavement Experience Measure, a suite of questions to inform local questionnaires.

Collecting feedback on the care provided to bereaved families and carers following the death of a child or young person is of critical importance to improving bereavement care. Whilst some local healthcare systems have well established mechanisms and questionnaires for collecting such feedback, many have indicated that they do not and would value guidance in this area.

Commissioned by NHS England (London Region) and developed by Healthy London Partnership in collaboration with Sands, the Stillbirth and Neonatal Death Charity, this resource has been informed by the experiences and expertise of over 380 bereaved families as well as healthcare professionals, charities, and third sector organisations. It builds on recent published literature and the success of Gathering feedback from families following the death of their baby: A resource to support professionals in maternity care and the Maternity Bereavement Experience Measure (2017).

This resource does not seek to redefine bereavement care, rather consolidate the principles and themes outlined within existing published literature, much of which has been co-developed with bereaved families. It has been tested with bereaved families and bereavement support staff to ensure that it effectively and sensitively captures the experiences of bereaved parents and carers.

It is hoped that this resource will inform the development of any new, and the review of existing feedback mechanisms. It is hoped that local bereavement support teams, clinical teams, patient experience teams, patient advice and liaison services, third sector organisations, and charities find it useful in supporting local improvement in bereavement care.

NHS England has expressed an interest in publishing this resource nationally through their Gateway process. Please therefore feel free to share this resource with interested colleagues.

Download the resource here

The ‘Ideal bereavement care’ section of this resource can be downloaded separately here

For any queries about this resource, please contact David McKinlay, HLP Programme Manager at david.mckinklay3@nhs.net.

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