What we as pediatricians believe is comprehensive coordinated care for patients with medical complexity may not be perceived that way by families and other caregivers. Ames et al (10.1542/peds.2022-060975) in a study being early released this month in Pediatrics share with us a qualitative assessment of disability-based discrimination in pediatric healthcare. The authors performed semi-structured interviews of 30 caregivers of children with medical complexity who were recruited from 15 states.
Thematic analysis identified 6 themes related to drivers of health care discrimination including a “lack of clinician knowledge, clinician apathy, and incorrect clinician assumptions about that child or family.” Three other themes pointed out how discrimination was manifested via their child having “limited accessibility to care, substandard care, and dehumanization.” Quotes from caregivers to demonstrate the drivers and manifestations of discrimination are offered throughout the results section of the article. The authors in the discussion section of their study not only summarize their findings but also describe what we can do to mitigate this discrimination.
We solicited a commentary from Drs. Stacey Cook, Sangeeta Mauskar, and Jay Berry from Boston Children’s Hospital (10.1542/peds.2023-061604) who believe the findings in the study by Ames et al are “true and generalizable.” The commentary provides additional insight into why this happens and what we can do. For example, they call for a curriculum addressing disability as a mandatory component of every medical student’s core curriculum. Such a curriculum should include how to competently and humanistically work with children and families who have disabilities. If you want to raise your own awareness of why families of children with medical complexity feel discriminated, link to this important study and learn more.