Living with the Unknown: A Qualitative Study of Parental Experience of Prognostic Uncertainty in the Neonatal Intensive Care Unit

Am J Perinatol. 2021 Jul;38(8):821-827. doi: 10.1055/s-0039-3402722. Epub 2020 Jan 3.


Objective: This study aims to characterize the experience of prognostic uncertainty for neonatal intensive care unit (NICU) parents.

Study design: We conducted a qualitative interview study of current and former NICU parents regarding their experience with prognostic uncertainty in the NICU. Interviews were transcribed and analyzed using a grounded theory methodology.

Results: Twenty-four parents were interviewed before achieving thematic saturation. Three phases of the parental experience of prognostic uncertainty emerged: shock, gray daze, and looking forward. These phases often, but not always, occurred sequentially. In shock, parents felt overwhelmed by uncertainty and were unable to visualize a future for their family. In gray daze, parents felt frustrated by the continued uncertainty. While accepting the possibility of a future for their family, they could not conceptualize a path by which to achieve it. In looking forward, parents accepted uncertainty as inevitable and incorporated it into their vision of the future.

Conclusion: While each parent experienced the prognostic uncertainty in the neonatal intensive care unit in their own way, we found three common experiential phases. By understanding how a parent experiences prognostic uncertainty in these phases, providers may become better able to communicate and form therapeutic relationships with parents.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Communication
  • Emotions
  • Female
  • Humans
  • Infant, Newborn*
  • Infant, Newborn, Diseases / therapy
  • Infant, Premature
  • Intensive Care Units, Neonatal*
  • Interviews as Topic
  • Male
  • Parents / psychology*
  • Professional-Family Relations*
  • Prognosis*
  • Qualitative Research
  • Uncertainty*