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Research Snapshot Theater: Patient and Family Support, Pediatric II

How We Talk About Disability: A Qualitative Analysis of Family Meetings in Pediatric ICUs

Monday, March 23, 2026
10:15 AM - 11:15 AM Central Time
Location: Connections Central - RST 09

  • Ryan Sutyla, MD (he/him/his)

    Duke University Hospital

    Disclosure(s): No relevant financial relationship(s) to disclose.

  • KY

    Katelyn Young, N/A

    Medical Student
    Duke University Medical School

    Disclosure information not submitted.

  • NN

    Nikhita Nanduri, N/A

    Medical Student
    Duke University School of Medicine

    Disclosure information not submitted.

  • SD

    Saisha Dhar, N/A

    Medical Student
    Vanderbilt University School of Medicine

    Disclosure information not submitted.

  • SB

    Sarah Barton, ThD, MS, OTR/L, BCP

    Assistant Professor of Orthopaedic Surgery, Assistant Professor of Theological Ethics
    Duke University Hospital

    Disclosure information not submitted.

  • ML

    Monica Lemmon, MD

    Chief, Division of Pediatric Neurology; Associate Professor of Pediatrics
    Duke University Hosptial

    Disclosure information not submitted.

Introduction: Many infants and children in the intensive care unit have or are anticipated to have disability. Understanding how clinicians introduce, discuss, and contextualize disability with families has important implications for patient care. Relatedly, language can contribute to disability bias in healthcare. Through this qualitative analysis of family meeting transcripts, we sought to evaluate the language used to discuss a child’s disability and understand themes related to its use.


Methods: This study was part of a larger qualitative study examining family meeting dynamics and decision making in the pediatric intensive care unit (PICU), pediatric cardiac intensive care unit (PCICU), and neonatal intensive care unit (NICU). Family meetings involved an infant less than or equal to 1 year old and were held to discuss neurologic prognosis or life-sustaining treatment. We performed a secondary, post-hoc analysis of family meeting transcripts and developed a codebook to evaluate language used to discuss disability. Two researchers coded each transcript, with differences resolved in consensus.


Results: A total of 68 family meetings involving 36 parents of 24 infants were screened; 45 (66%) family meetings included disability language. Current or future disability was referenced during conferences by explicitly naming disability, sharing information about disability characteristics, and using offensive language. Additionally, we identified five themes that further characterized disability language: 1) Euphemisms for disability, 2) Invoking the healthy other, 3) The intersection between quality of life and disability, 4) Using the medical model to contextualize disability, and 5) Disability’s impact on family.


Conclusions: The language used by family members and clinicians to discuss disability in this study’s family meetings, as well as the context of the disability language use, can provide important insight into how disability is addressed in pediatric and neonatal ICUs. These findings can inform further work to develop training tools to aid pediatric clinicians in discussing disability effectively and compassionately.