Experiences of Ableism in Pediatric Health Care: A Novel Observer-Reported Measure
Organization: University of Utah Department of Pediatrics
Primary Contact: Stefanie Ames, MD, MS
Grant Amount: $1,011,977 for 36 months
Date Awarded:
Purpose
Families of children and youth with special health care needs (CYSHCN) report experiences with ableism as a key barrier to accessing quality care. Ableism is the unfair treatment or lack of consideration for people with disabilities, occurring throughout society, including in health care.
Widespread ableism has been identified in pediatric health care, including withholding treatment, ignoring family preferences, lack of flexibility, and providers making broad generalizations about disabilities. Moreover, disability-based discrimination can lead to limited access to care, substandard care, dehumanization, forgone health care, and negative health consequences. The University of Utah’s groundbreaking lived experience-led research, funded by the Foundation, built on this work to identify 11 specific domains of ableism.
Despite growing evidence of how ableism harms CYSHCN and their families, researchers and administrators lack adequate tools to measure it and its impact. To assess and address ableism in pediatric health care, a reliable and validated measurement tool is needed.
This grant will build off previous research identifying specific domains of ableism to develop a pivotal, first-of-its-kind measurement tool of ableism in pediatric health care and apply psychometric methods to ensure the tool is valid and reliable. Led by the University of Utah, this research also involves the University of Pittsburgh and the University of Wisconsin-Madison. Designated professional Lived Experience Partners, who are members of the research team at each of the involved universities, will inform and engage in the entire process.
