Family involvement in learning from expected child deaths: a qualitative study of UK parents

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.