Experiences of Ableism in Pediatric Healthcare

BACKGROUND There is growing evidence of ableism in pediatric health care, but our limited understanding of the experiences of ableism inhibits further evaluation and intervention. The study objective was to describe community perspectives of the experiences of ableism in pediatric health care for children with disabilities. METHODS Participants completed a group concept mapping study using web-based software to input experiences of ableism in health care. Following a formal statement reduction, participants sorted unique experiences into conceptual clusters. Data were mapped to generate a similarity matrix. A multidimensional scaling algorithm generated a point map, and a hierarchical cluster analysis grouped statements into clusters. Focus groups validated and labeled clusters. RESULTS Participants (n = 132) generated 658 statements about ableism experiences. After reduction, 145 experiences were categorized in 11 conceptually distinct clusters: 1) substandard care including withholding care, 2) dehumanizing language and behaviors, 3) negative assumptions, 4) inflexible organizational policies and practices, 5) inaccessible built environment and lack of accommodations, 6) lack of access to resources, 7) unfair standards and normalized inequity in health systems, 8) dismissal of the lived experience and caregiver expertise, 9) intersectional identities and judgements of worthiness to receive care, 10) restrictions driven by insurance coverage and policy, and 11) complexity in community and health services navigation. CONCLUSIONS Wide-ranging experiences of ableism occur in pediatric health care interactions. The lived experiences of ableism identified in this study provide insight for future research in pediatric health care.