Experiences of Ableism in Pediatric Healthcare

There is limited information on how children and their caregivers experience ableism in health care. Ableist experiences are thus difficult to quantify and address. The aim of this work was to describe experiences of ableism in pediatric health care and to develop a framework of such experiences. The study, published in Pediatrics, identified 145 experiences of ableism in pediatric health care and defined 11 distinct domains: substandard care, dehumanizing language and behaviors, negative assumptions, dismissal of lived experience and caregiver expertise, judgements of worthiness, inflexible organizational policies, inaccessible environments, biased standards and normalized inequity, limited access to resources, insurance coverage gaps, and community and health services navigation barriers. The identification of these domains paves the way for future measurement of ableist experiences and the development of interventions to address ableism in pediatric health care.

Lead author Stefanie G. Ames, MD, MS, provided a video abstract about the article, and an accompanying commentary emphasizes that ableism is a crisis in American pediatric health care.