A Health Literate Approach to Address Health Disparities: a Virtual Program for Parents of Children with Sickle Cell Trait

Abstract

Background: Approximately 8% of African Americans born annually have sickle cell trait (SCT), a public health concern that may contribute to health disparities if individuals with SCT do not know it and lack access to understandable information about reproductive implications. Pre-pandemic, Ohio offered in-person SCT education for parents of SCT-affected children but many did not attend. Those with limited health literacy (HL) were less likely to achieve high knowledge. We used a HL-focused evaluation of this education to develop a virtual program (SCTaware) to communicate clear, actionable information and promote knowledge retention.

Methods: Seven English-speaking parents, three with limited HL, were recruited in 2019 for in-person session videotaping and SCT knowledge assessments. Clinicians, HL experts, educators, genetic counselors, and parent stakeholders (evaluators) reviewed sessions, assessments, and accompanying visuals.

Results: Evaluators: observed parents asked few questions; noted undefined technical terms, closed questions, key concept omission, and limited explanation of visuals scoring low for understandability, actionability, and clarity; and developed SCTaware for individual videoconference delivery (knowledge objectives; plain language guide; HL-informed communication strategies; new visuals scoring highly for understandability, actionability, and clarity; narrated post-education version; standardized educator training).

Conclusions: Using a HL-focused evaluation, our diverse team created a promising virtual SCT education program addressing a common issue affecting populations at risk for disparities. Given virtual education will likely continue post-pandemic and limited HL is common, this approach may be essential and replicable for other public health education programs, especially those transitioning to virtual formats, to convey clear, actionable information and promote health equity.

Trial registration: ClinicalTrials.gov NCT03984500.

Keywords: health literacy; healthcare disparities; sickle cell trait.

Figure 1.

Sample of Independent Virtual Visual Materials that Scored 100% for Understandability (A, B, E, F, G, H), Clarity (A, D, H), and Actionability (C, D, E, H).