"I'm completely off base here on what this child is capable of": A qualitative analysis of how medical ableism manifests in PICU clinicians' care of children with severe neurological impairment.

Abstract

Background: Children with severe neurological impairment (SNI) are at heightened risk of experiencing medical ableism from clinicians in the pediatric intensive care unit (PICU), where barriers such as time scarcity and heavy workloads limit clinicians' ability to provide personalized care.

Objective: To examine medical ableism and strategies to support PICU clinicians in understanding the lives of children with SNI and their families.

Methods: This US-based, single-center, qualitative study included PICU clinicians identified by the parents/caregivers of a child with SNI. Semi-structured 1:1 60-min interviews about the challenges of caring for children with SNI were conducted virtually. Coded data were extracted, thematically analyzed, and further conceptualized using the Dual Process Theory (DPT) bias reduction framework.

Results: Nineteen PICU clinicians participated. Three major themes emerged: 1) assumptions and misconceptions about children with SNI and their families, 2) barriers to providing personalized care, and 3) clinician-suggested strategies to honor the lives of children with SNI. These themes aligned with the DPT framework. As outlined in the DPT, system 1 "fast thinking" errors occur when quick observations inform decisions (e.g., snap judgments about a child's capabilities). Second, barriers (e.g., insufficient time for meaningful interactions) may prevent clinicians from providing unbiased care. Third, system 2 "slow thinking," where complex decision-making occurs, and can be enhanced through personalization strategies (e.g., viewing visuals of the child at baseline health).

Conclusions: Increasing clinician awareness of their potential implicit biases and utilizing bias reduction strategies to mitigate medical ableism in care are critical areas for future research.