Parental experience of child death in the paediatric intensive care unit: a scoping review

OBJECTIVE: The purpose of this scoping review was to identify the experiences of parents who endured the death of their child in the paediatric intensive care unit (PICU) and what end-of-life care they perceived as supportive. DESIGN: Scoping review using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidance. DATA SOURCES: Four databases, PubMed, Embase, CINAHL and PsycINFO, were searched for studies published until 24 August 2021, with no limitation on the year of publication. ELIGIBILITY CRITERIA: We identified qualitative studies published in English that focused on parents’ experiences during the death of their child in the PICU and excluded studies conducted in non-PICU settings, such as neonatal intensive care units and emergency departments. DATA EXTRACTION AND SYNTHESIS: A five-step methodological approach (‘identifying the research question’, ‘searching for relevant studies’, ‘selecting studies’, ‘charting the data’ and ‘collating, summarising and reporting the results’) developed by Arksey and O’Malley was used to chart the purpose and methods of the study and the characteristics of the study participants. The extracted parental experiences were inductively summarised. RESULTS: Of 435 articles, 14 studies conducted in seven countries were included in the final review. The background regarding the child’s condition varied, including whether it was acute or chronic, and the length of stay in the PICU. Parents needed effective interaction with healthcare providers to fulfil their parental role and be involved in critical decision-making regarding their child’s treatment in a rapidly evolving situation. The themes inductively extracted were ‘parental suffering’, ‘roles and responsibilities of parents’, ‘information sharing’, and ‘support of parents by healthcare providers’. CONCLUSIONS: Although parent–healthcare provider interactions influence parents’ experiences with their dying children in the PICU, by affecting parental roles and level of involvement, there is a lack of research focusing on improving these interactions.