Community-Engaged Research (CEnR) to Address Gaps in Chronic Kidney Disease Education among Underserved Latines—The CARE Study

Abstract

Ensuring equitable chronic kidney disease (CKD) education for Latine patients with low health literacy and low English proficiency stands as a critical challenge, and the “Caridad Awareness and Education” (CARE) initiative represents our ongoing effort to address this imperative issue. In collaboration with twenty-three patients living with CKD, diabetes and/or hypertension and twelve trained Community Health Workers (CHWs) from diverse Latine subgroups, we conducted a research initiative funded by the National Kidney Foundation. Our primary objective was to co-design and test culturally tailored patient education materials (PEMs) for underserved Latine adults at risk for or diagnosed with CKD. We effectively integrated Community-Engaged Research (CEnR) principles with a Human-Centered Design (HCD) approach to create a range of CKD-PEM prototypes in Spanish. Patient preferences for printed educational materials were clear. They favored printed materials that incorporated visual content with concise text over digital, email, texts, or online resources and personalized phone outreach and the involvement of CHWs. Additionally, patients identified their unwavering commitment to their families as a forceful motivator for caring for their kidney health. Currently, a culturally and linguistically tailored CKD flipchart for one-on-one education, led by CHWs, is undergoing a pilot testing phase involving a sample of one hundred Latine patients at risk for or diagnosed with CKD. This innovative approach signifies a commitment to amplifying the insights and expertise of the Latine community afflicted by kidney health disparities, effectively embracing a CEnR to forge meaningful and impactful CKD-PEMs.