501 - The ADEPT (Advancing Disability Education for Pediatric Trainees) Project: Partnering With Patients-Families to Improve Provider Education Regarding Children with Disabilities

Publication Number: 501.6663

Lucas Bruton, Ann & Robert H. Lurie Children's Hospital of Chicago/Northwestern University Feinberg School of Medicine, Chicago, IL, United States; Cara L. Coleman, UVA School of Medicine INOVA Campus, Lorton, VA, United States; Michael Navarro, Northwestern University The Feinberg School of Medicine, Chicago, IL, United States; Zecilly Guzman, Ann & Robert H. Lurie Children’s Hospital of Chicago, Cicero, IL, United States; Leopoldo Castillo, Ann & Robert H. Lurie Children's Hospital of Chicago, Blue Island, IL, United States; Mary McBride, Northwestern University The Feinberg School of Medicine, Chicago, IL, United States; Carolyn C.. Foster, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States

Background: Children with disabilities (CWD) encounter specific challenges in obtaining quality health care. Enhancing pediatric provider knowledge about CWD needs and mitigating ableist behaviors may reduce challenges to proper care. Partnering with patients, families, and lived experience partners to improve provider education may address this gap.

Objective: Working with a lived experience partner, we aimed to: a) explore the experiences of CWD and their families, teachers, and health care administrators (HCA); b) identify provider ableist behaviors and knowledge gaps that may negatively impact care; and c) determine necessary information to develop an ideal curriculum for providers who treat CWD.

Design/Methods: From December 2023 to June 2024, we conducted a series of six virtual focus groups and three interviews composed of CWD (n=13), parents/caregivers (n=8), teachers (n=6), and HCA (n=7), with one focus group of parents/caregivers (n=3) in Spanish. Recruitment occurred via local and national purposive and snowball sampling using a survey distributed through national family-led organizations as well as local and national children’s advisory networks and email lists. Respondents were screened for eligibility and invited to a Zoom focus group or interview. Participants reflected on personal experiences with health care providers regarding communication, knowledge, attitudes, and access to care. Interviews were transcribed and evaluated using applied thematic analysis and constant comparative analysis with qualitative software (Dedoose) to determine necessary concepts to develop core competencies specific to the care of CWD.

Results: Participant demographics are shown in Table 1. Among the overarching qualitative themes of communication, knowledge, attitudes, and access to care, subthemes included: 1) the importance of practicing humility; 2) being willing to question and explore unknowns; 3) identifying and mitigating stereotyping/profiling; and 4) being creative in navigating resources available for care (Table 2). Themes and subthemes were organized in a conceptual figure (Figure 1).

Conclusion(s): We found that open communication, combined with a desire to explore and question unknowns and appropriate attitudes towards CWD and their families, can lead to necessary improvements in access to and quality of care. The important themes identified by stakeholders in CWD care will be vital to developing a curriculum that will place learning from lived experiences, respect, and humility at the core of teaching pediatric trainees to provide effective care for CWD.

Table 1: Characteristics of Focus Group and Interview Participants


Table 2: Themes and Subthemes Identified in Thematic Analysis


Figure 1: Conceptual Figure of Identified Themes/Subthemes