Parental experiences of end-of-life decision making in Neonatal Intensive Care Unit: A systematic review and qualitative data synthesis

Objective

This systematic review and meta-synthesis aimed to explore the experiences of parents making end-of-life decisions in Neonatal Intensive Care Unit (NICU).

Methods

We searched nine databases up to December 2023, including qualitative studies focused on parents’ experiences with end-of-life decisions in NICU. Methodological quality was assessed using the Joanna Briggs Institute critical appraisal tool for qualitative research. A thematic synthesis approach was used for data analysis.

Results

Nine studies were ultimately included. Four themes were identified: Roles in Decision-Making, Factors Influencing Decision-Making, Decision-Making Trade-offs, and Emotional Experience.

Conclusion

This meta-synthesis indicates that factors influencing parents' end-of-life decisions in NICU are complex and challenging. This provides evidence for the development of interventions for end-of-life decision-making, suggesting that these challenges should be carefully addressed to reduce the stress associated with this process.

Implications for practice

The findings will assist healthcare providers in considering the spectrum of parental perspectives in end of life decision making and provide guidance for the development of decision aids.