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Using Visual and Narrative Methods to Achieve Fair Process in Clinical Care
Published on: February 16, 2011
Diverse perspectives on death, disability, and quality of life: an exploratory study of racial differences in
Brownsyne Tucker Edmonds1, Shelley M Hoffman2, Tatiana Laitano2
1Department of Obstetrics & Gynecology, Indiana University School of Medicine, Indianapolis, IN, USA. btuckere@iupui.edu.
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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