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Experiences of healthcare personnel with death in the neonatal intensive care unit: a systematic review of qualitative studies

Objective To synthesise evidence from qualitative studies on the experiences of healthcare personnel (HCP) in the neonatal intensive care unit (NICU) caring for dying neonates. Methods We conducted a systematic search, in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO: CRD42021250015), of four databases (PubMed, Embase, PsycINFO and CINAHL) from date of inception of the databases to 31 December 2021 using MeSH terms and related keywords. Data were analysed using three-step inductive thematic synthesis. Quality assessment of included studies was performed. Results Thirty-two articles were included. There were 775 participants, majority (92.6%) of whom were nurses and doctors. Quality of studies was variable. The narratives of HCP coalesced into three themes: sources of distress, coping methods and the way forward. Sources of distress encompassed HCP’s discomfort with neonatal deaths; poor communication among HCP and with patient’s family; lack of support (from organisations, peers and HCP’s family) and emotional responses (guilt, helplessness and compassion fatigue). Methods of coping included setting emotional boundaries, support from colleagues, clear communication and compassionate care and well-designed end-of-life workflows. Steps taken by HCP to move forward and overcome the emotionally turbulent effects of NICU deaths included finding meaning in death, building deeper relationship with patients’ families and the NICU team and embracing purpose and pride in work. Conclusion HCP face several challenges when a death occurs in the NICU. HCP can provide better end-of-life care if their undesirable experiences with death are mitigated by better understanding and overcoming factors causing distress. The data that support the findings of this study are available from the corresponding author, ZA, on reasonable request.

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