O2068: Experiences of Ableism in Pediatric Healthcare: a National Group Concept Mapping Project

Background: There is growing evidence of pervasive ableism in pediatric healthcare and concern for its negative impacts on child and family health and wellbeing. However, there is limited understanding of how ableism manifests in pediatric healthcare, inhibiting the ability to develop targeted intervention. The objective of this study was to generate a detailed understanding of the manifestations and experiences of ableism in healthcare for children with disabilities, through community-centered research.

Methods: The research team, including three lived-experience partners and an advisory committee of national experts on childhood disability, referred 223 potential participants across the US to participate in Group Concept Mapping. Respondents utilized a web-based software to input ideas of ableism in response to the following prompt: “Sometimes children and youth with disabilities have difficulty getting the health care they need. They might be treated differently or unfairly by the healthcare system or people in healthcare settings. They may receive less attention or poorer care compared to children without disabilities. One of the ways this occurs is…” Respondents then participated in sorting ideas into conceptual categories. Data were mapped to generate a similarity matrix. A multidimensional scaling algorithm was then applied to generate a point map, and a hierarchical cluster analysis was performed to group statements together.

Results: Overall, the respondents included 132 people from 34 states with over 80% (n=111/132) of participants representing either a family member of a child with disability or an adult with childhood onset disability. Respondents generated 650 statements which were narrowed systematically to 145 unique manifestations. Respondents sorted statements into 14 separate conceptual clusters with a stress rating of 0.23 (Figure 1). Clusters included concept domains of: 1) lack of provider knowledge, 2) quality of life assumptions, 3) diagnostic overshadowing, 4) ignoring the child, 5) dismissing the lived experience of the caregiver, 6) unequal standards, 7) provider disinterest, 8) lack of consideration of disability in institutional policy, 9) lack of consideration of disability in the built environment, 10) fragmented healthcare systems, 11) dehumanizing experiences, 12) inadequate accessibility to appointments, 13) insurance concerns, and 14) complex care navigation (Table 1).

Conclusion: There are numerous manifestations of ableism in healthcare identified by a national sample of respondents through Group Concept Mapping. Manifestations of ableism occur across the experience of healthcare and the concept domains of ableism identified in this study provide insight for future interventions to improve healthcare equity for children with disabilities. Future research will include the determination of face validity and labeling domains with lived experience focus groups.