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Am J Perinatol 2021; 38(08): 821-827
DOI: 10.1055/s-0039-3402722
Original Article

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

Jeanne A. Krick
1   Department of Pediatrics, Madigan Army Medical Center, Tacoma, Washington
,
Elliott Mark Weiss
2   Treuman Katz Center for Pediatric Bioethics, Seattle, Washington
3   Division of Neonatology, University of Washington, Seattle, Washington
,
Anna Snyder
4   Department of Pediatrics, University of Washington, Seattle, Washington
,
Shefali Haldar
5   Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, Washington
,
Georgina D. Campelia
6   Department of Bioethics and Humanities, University of Washington, Seattle, Washington
,
Douglas J. Opel
2   Treuman Katz Center for Pediatric Bioethics, Seattle, Washington
4   Department of Pediatrics, University of Washington, Seattle, Washington
6   Department of Bioethics and Humanities, University of Washington, Seattle, Washington
› Author Affiliations Funding This study was supported in part from the University of Washington Neonatal Bioresearch Fund.
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Abstract

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.

Keywords

neonatal intensive care unit - uncertainty - parent - communication

Note

The views expressed in this manuscript are those of the authors and do not reflect the official policy or position of the Department of the Army, Department of Defense, or the U.S. Government.


Supplementary Material



Publication History

Received: 09 September 2019

Accepted: 26 November 2019

Article published online:
03 January 2020

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