Abstract
BACKGROUND: In England, Child Death Review (CDR) is a statutory process designed to identify full reasons for death, support parents, improve care and save lives. At CDR meetings, professionals review care and identify learning. Although parents do not attend CDR meetings, they should be invited to contribute questions and feedback and be informed of outcomes. There is a lack of evidence to support implementation, particularly for families after an expected child death. OBJECTIVE: To examine how parent involvement in CDR is operationalised currently, following expected child death, to support improvements in practice. METHODS: A secure online questionnaire was developed to collect data on parental CDR involvement in hospitals and palliative care services in England. Semistructured interviews were undertaken during 2022-2023, with 21 professionals in five care settings, purposively sampled from the survey to include sites with different provision contexts. Quantitative data were analysed using basic descriptive statistics. Qualitative data were analysed using directed qualitative content analysis and through a conceptual lens of Normalisation Process Theory. RESULTS: Questionnaires were completed by 13 Paediatric Intensive Care Units and 16 palliative care services. 25/29 (86%) held CDR meetings reflecting statutory guidance, 17/29 (59%) routinely informed parents about CDR and 10/29 (28%) shared outcomes with them. Interviews with 21 professionals revealed that despite valuing CDR, many struggled to implement the process and lacked confidence to involve parents. Professionals felt that parents need good bereavement support to be able to contribute and wanted resources to help inform parents about CDR and support their involvement. Enthusiastic leaders were important. Lack of funding, particularly for CDR and bereavement keyworkers, was a challenge.