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Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making

Journal of Perinatology volume 41, pages 396–403 (2021)Cite this article

Subjects

Abstract

Objective

To qualitatively explore perceptions of pain/suffering, disability, and coping by race among pregnant women facing the threat of a periviable delivery (22 0/7–24 6/7 weeks).

Study design

Interviews were conducted in-hospital prior to delivery. Transcripts were coded verbatim and responses were stratified by race (white vs non-white). Conventional content analysis was conducted using NVivo 12.

Results

We recruited 30 women (50% white, 50% non-white). Most women expressed love and acceptance of their babies and described pain as a “means to an end.” Non-white women focused almost exclusively on immediate survival and perseverance, while white women expressed concerns about quality of life beyond the NICU. The majority of non-white women were unable to recall any discussions with their doctors about their baby’s comfort, pain, or suffering.

Conclusions

These findings may suggest that culturally tailored approaches to counseling and decision-support may be beneficial for patients from marginalized or minoritized groups.

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Fig. 1: Qualitative perspectives on death, disability, pain and suffering, by race.

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Funding

This study was funded by the National Institutes of Health R21 Exploratory/Developmental Research Grant (HD089032-01).

Author information

Authors and Affiliations

  1. Department of Obstetrics & Gynecology, Indiana University School of Medicine, Indianapolis, IN, USA

    Brownsyne Tucker Edmonds, Shelley M. Hoffman, Tatiana Laitano, Erin Jeffries & Shannon Jager

  2. Children’s Hospital of Wisconsin, Milwaukee, WI, USA

    Karen Kavanaugh

  3. College of Nursing, University of Illinois at Chicago, Chicago, IL, USA

    Karen Kavanaugh

Authors
  1. Brownsyne Tucker Edmonds
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  2. Shelley M. Hoffman
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  3. Tatiana Laitano
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  4. Erin Jeffries
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  5. Shannon Jager
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  6. Karen Kavanaugh
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Contributions

BTE and KK contributed to study concept, design, analysis, and writing. KK served as a mentor to BTE. SMH, TL, and EJ contributed to recruitment, data management, analysis, and writing. SJ contributed to analysis and writing.

Corresponding author

Correspondence to Brownsyne Tucker Edmonds.

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The authors declare that they have no conflict of interest.

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Tucker Edmonds, B., Hoffman, S.M., Laitano, T. et al. Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making. J Perinatol 41, 396–403 (2021). https://doi.org/10.1038/s41372-020-0739-5

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  • DOI: https://doi.org/10.1038/s41372-020-0739-5

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