Family Involvement in Learning From Expected Child Deaths: A Qualitative Study of UK Parents.
Joanna Garstang, Anna Pease, Karen Shaw and 3 others
PMID 40621798WHAT IT FOUND
Bereaved parents described keyworkers as the most critical factor in their experience of child death reviews.
Positive outcomes relied on proactive, personalized communication and timely answers. Parents valued choice in contact methods and needed support to provide feedback, rather than being left to manage the process alone.
Key findings
01The keyworker role had the most impact on parents' experiences, facilitating both involvement in the review and bereavement support.
02Parents found it difficult to provide feedback when given unstructured options, such as a blank page, and preferred proactive support from keyworkers.
03Communication preferences varied significantly, with some parents finding online meetings helpful and others distressed by unexpected contact.
STILL TO COME
How it was doneWhat they found
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What it does not show
The study focused only on expected child deaths in England, so findings may not apply to sudden unexpected deaths or other healthcare systems. Parents with particularly negative experiences or those who wanted no involvement might have declined participation, potentially biasing the sample towards those more engaged with the process. The analysis did not explore cultural contexts in depth, despite a diverse participant group. The toolkit developed from this co-design project has not yet been evaluated for effectiveness.
Declared interests
The work was funded by NIHR Research for Patient Benefit. Author J.G. has various roles and funding related to child death reviews and sudden unexpected death in childhood, including advisory roles for charities and legal expert witness work. Other authors declared NIHR funding for unrelated projects and fellowship support.
The easy way to misread this
Do not assume that all bereaved parents want or benefit from involvement in child death reviews. The study found that some parents did not want to participate, and that the value of the process depended heavily on the quality of the keyworker relationship and individual communication preferences.