Family Involvement in Learning From Expected Child Deaths: A Qualitative Study of UK Parents

TL;DR

This study explores how UK parents experience involvement in Child Death Reviews after their child's death, highlighting the importance of communication and support from keyworkers.

Contribution

The study identifies how keyworkers influence parents' experiences in Child Death Reviews and emphasizes the need for their proper training and resources.

Findings

Positive CDR experiences included understanding the process, receiving answers, and feeling their input could help other families.

Negative experiences involved confusion about keyworker roles and lack of communication or reassurance.

Good communication and support from keyworkers enabled parental involvement in CDR.

Abstract

Bereaved parents often have questions about their child's illness and care even when the cause was established prior to death. Child Death Review (CDR) seeks to understand the full reasons for each child's death to help improve care. In the United Kingdom, parents should be informed of CDR, asked for questions or feedback and outcomes shared with them. They should be allocated a keyworker for support with bereavement and CDR. This study aims to explore parents' experiences of CDR following expected child deaths.

Parents whose children died in England during 2021–2022, in a hospital, hospice or at home with palliative care were recruited through social media, charities and hospitals. Children were aged 1 month to 18 years. Parents had semi‐structured interviews, which were analysed using template thematic analysis.

Parents of 22 children were interviewed. Two integrative themes were generated from analysis: positive and negative CDR experiences. Keyworkers appeared to ensure more positive experiences; these included understanding the purpose of CDR, having answers and reassurance and feeling their CDR involvement could help other families. Negative experiences included confusion around the role of the keyworker, not understanding or being involved in CDR, being left without answers and information from CDR not providing any comfort. Communication and support were the factors driving these experiences. Not all parents wanted to be involved in CDR.

Keyworkers appear to facilitate parental involvement in CDR. Adequate resources and training should be provided for keyworkers to augment learning from child deaths and bereavement support.

Most, but not all, bereaved parents want to be involved in Child Death Review.Parents reported positive Child Death Review experiences, including information and reassurance, and feeling that their input may contribute to improvements in care.Good communication and support from bereavement keyworkers enable parents to contribute to Child Death Review.Bereavement keyworkers provide vital support to grieving families and enable parental involvement in Child Death Review; it is important that this role is appropriately resourced and keyworkers trained in Child Death Review as well as bereavement.Although the study was based on the English Child Death Review system, the findings should apply internationally, as Child Death Review occurs in many countries.

Most, but not all, bereaved parents want to be involved in Child Death Review.

Parents reported positive Child Death Review experiences, including information and reassurance, and feeling that their input may contribute to improvements in care.

Good communication and support from bereavement keyworkers enable parents to contribute to Child Death Review.

Bereavement keyworkers provide vital support to grieving families and enable parental involvement in Child Death Review; it is important that this role is appropriately resourced and keyworkers trained in Child Death Review as well as bereavement.

Although the study was based on the English Child Death Review system, the findings should apply internationally, as Child Death Review occurs in many countries.

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