Treat us like humans: Lived experience solutions to improve health care for multiply marginalized children with...

Multiply marginalized children with disabilities experience discrimination and inequity and consequently disparities in access to health care, health outcomes, and mortality. We gathered information about the health care experiences of multiply marginalized children with disabilities to describe lived experience-based solutions for improving health care and outcomes for this population.

A qualitative exploratory study using focus group and individual interviews with multiply marginalized young adults with disabilities and the caregivers of multiply marginalized children with disabilities in the United States and territories. We asked how services could be changed to better support their health and well-being using an initial deductive approach combined with ongoing inductive thematic analysis.

The study team conducted 5 focus groups and 4 individual interviews with 33 young adults and caregivers in English, Spanish, and ASL. Negative health care experiences include biased and discriminatory professional behavior, barriers to access, and the necessity and burden of advocacy. Proposed solutions focused on professional growth, mental health, disability-centered design, and lived experience leadership. An underlying sentiment was the desire for equitable treatment.

Advancing health equity for multiply marginalized children with disabilities is within reach. Starting points for health care professionals and system leaders include addressing biases and developing reflective and empathic practices and systems, including child and family mental health in care, and using disability-centered design to proactively and flexibly support access. Implementation should be done with lived experience leadership and the centering of human dignity for multiply marginalized children with disabilities and their families.