Youth With Medical Complexity Perceive Disability Discrimination and Disability-Affirming Care: A Qualitative Study

BACKGROUND AND OBJECTIVES Previous studies describe disability-based discrimination in health care for children with medical complexity, perceived by family caregivers and clinicians. This study explores the perspectives of youth and young adults with medical complexity and disability on their own care. METHODS Using an inductive qualitative approach, we performed semistructured interviews with youth and young adults aged 14 to 24 years who receive care in a consultative complex care service or affiliated multidisciplinary clinics at a quaternary children’s hospital. Interviews were conducted on a video-conferencing platform and participants were offered the opportunity to have a family caregiver present during the interview. We performed thematic analysis of interview transcripts and compared findings with an existing framework. RESULTS Ten youth/young adults participated, with different underlying diagnoses and disabilities. Identified themes included drivers and manifestations of disability-based discrimination that have been previously described, with an additional manifestation of poor personal well-being. Themes also included drivers of disability-affirming care (clinician knowledge, interest, and curiosity) and manifestations of disability-affirming care (personal well-being, quality care, and humanistic care). Findings were synthesized into an expanded conceptual framework. CONCLUSION Youth and young adults with medical complexity perceive both disability-based discrimination and disability-affirming interactions with clinicians that impact their health and well-being. Understanding the lived experiences of youth in their own health care highlights important opportunities to improve disability training and promote inclusive care.