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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

© 2020. Thieme. All rights reserved.

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  • References

  • 1 Mishel MH. The measurement of uncertainty in illness. Nurs Res 1981; 30 (05) 258-263
    CrossrefPubMedGoogle Scholar
  • 2 Mishel MH, Braden CJ. Finding meaning: antecedents of uncertainty in illness. Nurs Res 1988; 37 (02) 98-103
    CrossrefPubMedGoogle Scholar
  • 3 Han PK, Klein WM, Arora NK. Varieties of uncertainty in health care: a conceptual taxonomy. Med Decis Making 2011; 31 (06) 828-838
    CrossrefPubMedGoogle Scholar
  • 4 Spinelli M, Frigerio A, Montali L, Fasolo M, Spada MS, Mangili G. 'I still have difficulties feeling like a mother': the transition to motherhood of preterm infants mothers. Psychol Health 2016; 31 (02) 184-204
    CrossrefPubMedGoogle Scholar
  • 5 Santacroce SJ. Parental uncertainty and posttraumatic stress in serious childhood illness. J Nurs Scholarsh 2003; 35 (01) 45-51
    CrossrefPubMedGoogle Scholar
  • 6 Shudy M, de Almeida ML, Ly S. et al. Impact of pediatric critical illness and injury on families: a systematic literature review. Pediatrics 2006; 118 (Suppl. 03) S203-S218
    CrossrefPubMedGoogle Scholar
  • 7 Young Seideman R, Watson MA, Corff KE, Odle P, Haase J, Bowerman JL. Parent stress and coping in NICU and PICU. J Pediatr Nurs 1997; 12 (03) 169-177
    CrossrefPubMedGoogle Scholar
  • 8 Ward K. Perceived needs of parents of critically ill infants in a neonatal intensive care unit (NICU). Pediatr Nurs 2001; 27 (03) 281-286
    PubMedGoogle Scholar
  • 9 Cleveland LM. Parenting in the neonatal intensive care unit. J Obstet Gynecol Neonatal Nurs 2008; 37 (06) 666-691
    CrossrefPubMedGoogle Scholar
  • 10 Green J, Darbyshire P, Adams A, Jackson D. Balancing hope with reality: how neonatal nurses manage the uncertainty of caring for extremely premature babies. J Clin Nurs 2015; 24 (17-18): 2410-2418
    CrossrefPubMedGoogle Scholar
  • 11 Morse JM. Sampling in Grounded Theory. In: Bryant A, Charmaz K. editors. The SAGE Handbook of Grounded Theory. London: SAGE Publications Ltd; 2007
    CrossrefGoogle Scholar
  • 12 Starks H, Trinidad SB. Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory. Qual Health Res 2007; 17 (10) 1372-1380
    CrossrefPubMedGoogle Scholar
  • 13 Bryant A, Charmaz K. Grounded Theory in Historical Perspective: An Epistemological Account. In: Bryant A, Charmaz K. editors. The SAGE Handbook of Grounded Theory. London: SAGE Publications Ltd; 2007
    Google Scholar
  • 14 Charmaz K. Constructing Grounded Theory:A Practical Guide Through Qualitative Analysis. Thousand Oaks, CA: Sage; 2010
    Google Scholar
  • 15 Dedoose. 7.0.23 ed. Los Angeles, CA: SocioCultural Research Consultants, LLC; 2016
    Google Scholar
  • 16 Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation an variability. Field Methods 2006; 18: 59-82
    CrossrefPubMedGoogle Scholar
  • 17 Brinchmann BS, Førde R, Nortvedt P. What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants. Nurs Ethics 2002; 9 (04) 388-404
    CrossrefPubMedGoogle Scholar
  • 18 Dadkhahtehrani T, Eskandari N, Khalajinia Z, Ahmari-Tehran H. Experiences of fathers with inpatient premature neonates: phenomenological interpretative analysis. Iran J Nurs Midwifery Res 2018; 23 (01) 71-78
    CrossrefPubMedGoogle Scholar
  • 19 Garfield CF, Lee Y, Kim HN. Paternal and maternal concerns for their very low-birth-weight infants transitioning from the NICU to home. J Perinat Neonatal Nurs 2014; 28 (04) 305-312
    Google Scholar
  • 20 Lasiuk GC, Comeau T, Newburn-Cook C. Unexpected: an interpretive description of parental traumas' associated with preterm birth. BMC Pregnancy Childbirth 2013; 13 (Suppl. 01) S13
    CrossrefPubMedGoogle Scholar
  • 21 Cleveland LM. A Mexican American mother's experience in the neonatal intensive care unit. J Perinat Neonatal Nurs 2009; 23 (02) 178-185
    CrossrefPubMedGoogle Scholar
  • 22 Mishel MH. Reconceptualization of the uncertainty in illness theory. Image J Nurs Sch 1990; 22 (04) 256-262
    CrossrefPubMedGoogle Scholar
  • 23 Adkins CS, Doheny KK. Exploring preterm mothers' personal narratives: influences and meanings. ANS Adv Nurs Sci 2017; 40 (02) 154-167
    CrossrefPubMedGoogle Scholar
  • 24 Sankey JJ, Brennan S. Living with difference: caring for a premature baby at home. Collegian 2001; 8 (02) 10-18
    CrossrefPubMedGoogle Scholar
  • 25 Wilson C, Cook C. Ambiguous loss and post-traumatic growth: experiences of mothers whose school-aged children were born extremely prematurely. J Clin Nurs 2018; 27 (7-8): e1627-e1639
    CrossrefPubMedGoogle Scholar
  • 26 Aagaard H, Hall EO. Mothers' experiences of having a preterm infant in the neonatal care unit: a meta-synthesis. J Pediatr Nurs 2008; 23 (03) e26-e36
    CrossrefPubMedGoogle Scholar
  • 27 Deeney K, Lohan M, Parkes J, Spence D. Experiences of fathers of babies in intensive care. Paediatr Nurs 2009; 21 (01) 45-47
    CrossrefPubMedGoogle Scholar
  • 28 Ncube RK, Barlow H, Mayers PM. A life uncertain - my baby's vulnerability: Mothers' lived experience of connection with their preterm infants in a Botswana neonatal intensive care unit. Curationis 2016; 39 (01) e1-e9
    CrossrefPubMedGoogle Scholar
  • 29 Flacking R, Ewald U, Starrin B. “I wanted to do a good job”: experiences of 'becoming a mother' and breastfeeding in mothers of very preterm infants after discharge from a neonatal unit. Soc Sci Med 2007; 64 (12) 2405-2416
    CrossrefPubMedGoogle Scholar
  • 30 Lupton D, Fenwick J. 'They've forgotten that I'm the mum': constructing and practising motherhood in special care nurseries. Soc Sci Med 2001; 53 (08) 1011-1021
    CrossrefPubMedGoogle Scholar
  • 31 Heermann JA, Wilson ME, Wilhelm PA. Mothers in the NICU: outsider to partner. Pediatr Nurs 2005; 31 (03) 176-181 , 200
    PubMedGoogle Scholar
  • 32 Fenwick J, Barclay L, Schmied V. 'Chatting': an important clinical tool in facilitating mothering in neonatal nurseries. J Adv Nurs 2001; 33 (05) 583-593
    CrossrefPubMedGoogle Scholar