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

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

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
JournalJournal of Perinatology
DOIs
StateAccepted/In press - 2020

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Obstetrics and Gynecology

Fingerprint Dive into the research topics of 'Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in periviable decision-making'. Together they form a unique fingerprint.

Cite this