Systemic Inequities in Health Care: Lessons Learned From Black People With IDD and Their Care Partners.

Abstract

Background: Black people with intellectual and developmental disabilities (IDD) are disproportionately impacted by health disparities and endure distinctive systemic challenges as a result of their intersecting identities.

Objectives: This manuscript describes a collaborative project between university researchers, people with IDD and their care partners, and providers to understand contextual and individual characteristics that influence equitable health services access and use.

Methods: The project follows a critical participatory action research approach to address issues of power and equity at the intersections of race, gender, and disability. Data collection strategies included individual semi-structured interviews and focus groups, as well as interactive activities to facilitate deeper discussion.

Lessons learned: We describe strategies to manage challenges of delayed recruitment, power sharing, equitable and inclusive engagement, and dissemination.

Conclusions: Lessons learned underscore the diverse experiential expertise of Black people with IDD, their care partners, and providers in the co-creation of knowledge, the importance of opportunities for partners from different stakeholder groups to cultivate relationships as part of the research process, co-reflexivity as instrumental to assessing and reassessing engagement processes in real time, and implementation of inclusive strategies for participation in dissemination activities.