"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.
Ellie Oslin, Roberto E Montenegro, Stephanie A Kraft and 2 others
PMID 39191572WHAT IT FOUND
PICU clinicians admitted they often underestimate children with severe neurological impairment because they only see them at their sickest.
They suggested using photos of the child at home and asking parents specific questions to correct these biases and provide more personalized care.
Key findings
01Clinicians reported that seeing children with severe neurological impairment only during acute hospitalizations led them to underestimate the child's baseline abilities and quality of life.
02Barriers to personalized care included lack of time for connection, failure to document non-medical information shared by families, fear of offending parents, and clinician burnout.
03Suggested strategies to mitigate bias included viewing photos of the child at baseline health, asking clarifying questions about the child's identity, and reflecting on one's own assumptions.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study was conducted at a single institution, which may limit the generalizability of the findings. Participants were clinicians identified by families, so their perspectives may differ from those of clinicians not involved in the larger study. The sample size was small (19 clinicians), and participants may have been more committed to personalized care than typical practitioners. Demographic data on participants was not collected, limiting understanding of how role or experience level influenced responses.
Declared interests
The authors have no conflicts of interest relevant to this article to disclose.
The easy way to misread this
Do not interpret the clinicians' suggested strategies as evidence that they reduce bias or improve outcomes. These are self-reported ideas from a small group of clinicians in one hospital; the study did not test whether using photos or asking questions actually changes care quality or patient experience.