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Quantitative Assessment of Cortical Auditory-tactile Processing in Children with Disabilities
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Youths With Medical Complexity Perceive Disability Discrimination and Disability-Affirming Care: A Qualitative Study.

Alexandra Kimmel1,2, Jennifer Queally2,3, Mather Stover-Ling1

  • 1Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts.

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Summary

Youth and young adults with medical complexity experience disability discrimination and affirming care from clinicians. Understanding their perspectives is key to improving healthcare training and promoting inclusive practices.

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Area of Science:

  • Pediatric Healthcare
  • Disability Studies
  • Qualitative Research

Background:

  • Previous research highlighted disability discrimination in pediatric healthcare from caregiver and clinician viewpoints.
  • This study focuses on the direct experiences of youth and young adults with medical complexity.

Purpose of the Study:

  • To explore the perspectives of youth and young adults with medical complexity and disability regarding their healthcare experiences.
  • To identify themes of discrimination and affirming care from the patient's viewpoint.

Main Methods:

  • Inductive qualitative approach using semistructured interviews with 10 participants aged 14-24.
  • Interviews conducted via video conferencing, with optional caregiver presence.
  • Thematic analysis of transcripts, compared with an existing framework.

Main Results:

  • Participants reported disability-based discrimination, including impacts on personal well-being.
  • Drivers of disability-affirming care identified as clinician knowledge, interest, and curiosity.
  • Manifestations of disability-affirming care included improved personal well-being, quality, and humanistic care.

Conclusions:

  • Youth with medical complexity perceive both disability discrimination and disability-affirming interactions.
  • These interactions significantly impact their health and overall well-being.
  • Findings underscore the need for enhanced disability training and inclusive care models.