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Disability, ableism, and decision-making at extreme prematurity.

Anne Sullivan1, Jennifer Arnold2, Sheria Wilson3

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Summary
This summary is machine-generated.

Ableism influences decisions for extremely preterm infants, impacting care and quality-of-life assumptions. Addressing ableist biases is crucial for ethical, inclusive neonatal intensive care unit (NICU) decision-making.

Keywords:
AbleismBioethicsDisabilityExtreme prematurityShared-decision making

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Area of Science:

  • Medical Ethics
  • Neonatology
  • Disability Studies

Background:

  • Ableism, or discrimination based on disability, is prevalent in medical decision-making for extremely preterm infants.
  • Assumptions about quality of life, normalcy, and parental burden can shape clinical counseling and care choices.
  • Understanding the historical and sociocultural roots of ableism in medicine is essential for addressing its impact.

Purpose of the Study:

  • To examine how ableist assumptions influence clinical counseling and decisions for extremely preterm infants.
  • To explore the manifestations of ableist thinking in prognostic framing, risk communication, and institutional norms.
  • To review strategies for recognizing and addressing ableism in clinical practice within the neonatal intensive care unit (NICU).

Main Methods:

  • Literature review synthesizing research from neonatology, disability studies, and bioethics.
  • Analysis of ableist assumptions in quality-of-life assessments and parental burden considerations.
  • Exploration of anti-ableist communication, family-centered care, and medical education reform strategies.

Main Results:

  • Ableist assumptions subtly influence critical decisions regarding resuscitation and intensive care for extremely preterm infants.
  • Prognostic framing and risk communication often reflect societal biases rather than objective assessments.
  • Existing institutional norms may perpetuate ableist perspectives within the NICU setting.

Conclusions:

  • An explicit anti-ableist stance is necessary for ethical and inclusive decision-making in the NICU.
  • Implementing anti-ableist communication and family-centered care models can mitigate bias.
  • Interdisciplinary collaboration and medical education reform are vital for systemic change in neonatal care.