Brownsyne Tucker Edmonds1, Shelley M Hoffman2, Tatiana Laitano2, Erin Jeffries2, Shannon Jager2, Karen Kavanaugh3,4. 1. Department of Obstetrics & Gynecology, Indiana University School of Medicine, Indianapolis, IN, USA. btuckere@iupui.edu. 2. Department of Obstetrics & Gynecology, Indiana University School of Medicine, Indianapolis, IN, USA. 3. Children's Hospital of Wisconsin, Milwaukee, WI, USA. 4. College of Nursing, University of Illinois at Chicago, Chicago, IL, USA.
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.
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.
Authors: Brownsyne Tucker Edmonds; Fatima McKenzie; William F Fadel; Marianne S Matthias; Michelle P Salyers; Amber E Barnato; Richard M Frankel Journal: Simul Healthc Date: 2014-12 Impact factor: 1.929
Authors: Alexander K Smith; Ellen P McCarthy; Elizabeth Paulk; Tracy A Balboni; Paul K Maciejewski; Susan D Block; Holly G Prigerson Journal: J Clin Oncol Date: 2008-09-01 Impact factor: 44.544
Authors: Kartik K Venkatesh; Courtney D Lynch; Maged M Costantine; Carl H Backes; Jonathan L Slaughter; Heather A Frey; Xiaoning Huang; Mark B Landon; Mark A Klebanoff; Sadiya S Khan; William A Grobman Journal: JAMA Date: 2022-08-16 Impact factor: 157.335