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.
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