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Communication between neonatologists and parents when prognosis is uncertain

Journal of Perinatology volume 40, pages 1412–1422 (2020)Cite this article

Subjects

Abstract

Objective

When an infant’s prognosis is uncertain, communication between neonatologists and parents surrounding goals of care and decision-making can be challenging. This qualitative study explored communication between neonatologists and parents to discover qualities which may enhance or impede parent–clinician partnership under such difficult circumstances.

Study design

Guided by the National Cancer Institute (NCI) Patient Centered Communication framework, semi-structured individual interviews were conducted and analyzed regarding neonatologist and parent perceptions of their communication. Subjects consisted of nine dyads of neonatologists and English-speaking parents whose infant had an uncertain prognosis.

Results

Parents were overall satisfied with neonatologists’ communications concerning their infant’s uncertain trajectory. Nonetheless, both experienced challenges and distress during communication, impeding collaboration and engagement.

Conclusions

Families and neonatologists value principles of patient centered communication but report challenges implementing this practice. Incorporating a multidisciplinary approach in settings of prognostic uncertainty to foster patient centered communication, may enhance communication surrounding NICU care.

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Fig. 1: Patient centered communication in cancer care.

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Author information

Authors and Affiliations

  1. Division of Pediatric Palliative Care, Johns Hopkins All Children’s Hospital, St. Petersburg FL, 501 6th Ave So, St. Petersburg, FL, 33701, USA

    Laura L. Drach

  2. Department of Psychiatry, Dartmouth-Hitchcock Medical Center, Lebanon, NH, 100 Hitchcock Way, Manchester, NH, 03104, USA

    Debra A. Hansen

  3. Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, 6710B Rockledge Dr. Room 2227D, MSC 7002, Bethesda, MD, 20892-7002, USA

    Tracy M. King

  4. Division of General Pediatrics and Adolescent Medicine, Johns Hopkins School of Medicine, Suite 4200 Mason F. Lord Center Tower, 5200 Eastern Ave., Baltimore, MD, 21224, USA

    Erica M. S. Sibinga

Authors
  1. Laura L. Drach
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Correspondence to Laura L. Drach.

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Drach, L.L., Hansen, D.A., King, T.M. et al. Communication between neonatologists and parents when prognosis is uncertain. J Perinatol 40, 1412–1422 (2020). https://doi.org/10.1038/s41372-020-0673-6

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