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.
- Intensive Care Units, Neonatal
- Qualitative research
Data availability statement
The data that support the findings of this study are available from the corresponding author, ZA, on reasonable request.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
JQHW and JSC are joint first authors.
Contributors The idea of the review was germinated by JQHW, JSC and HTM and who performed primary data acquisition. ZA, TSZT and YPMN provided mentorship and guidance. All authors jointly performed data interpretation, formal analysis and conceptualisation of the themes. ZA is guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.