Decision-Making for Extremely Preterm Infants: A Qualitative Systematic Review

To synthesize and describe important elements of decision-making during antenatal consultation for threatened preterm delivery at the margin of gestational viability.

Data sources including PubMed, EMBASE, Web of Science, and CINAHL Plus were searched. We included all qualitative literature published on decision-making from 1990 to July 2021. Two authors independently screened and evaluated each study using the Critical Appraisal Skills Programme checklist; studies reaching moderate and high quality were included. We developed an extraction tool to collect and categorize data from each qualitative article, then used thematic analysis to analyze and describe the findings.

Twenty-five articles incorporating the views of 504 providers and 352 parents were included for final review. Thematic analysis revealed 4 main themes describing the experience of health care providers and parents participating in decision-making: factors that influence decision-making, information sharing, building a partnership, and making the decision. Parents and providers were not always in agreement upon which elements were most essential to the process of decision-making. Articles published in languages other than English were excluded.

Qualitative literature highlighting key factors which are important during antenatal counseling can inform and guide providers through the process of shared decision-making. Communicating clear, honest, and balanced information; avoiding artificially dichotomized options; and focusing on partnership building with families will help providers use the antenatal consultation to reach personalized decisions for each infant.