PEARL: A Guide for Developing Community-Engaging and Culturally-Sensitive Education Materials

Abstract

Community outreach and engagement has been a regular activity of the National Cancer Institute at its designated Cancer Centers. However, in 2016, community outreach and engagement became a required activity for all cancer centers. Yet there is a gap in the literature that provides guidelines for developing materials that resonate with communities. We developed the PEARL rubric to fulfill that gap from our work developing culturally sensitive breast cancer education materials for African American and Immigrant African women. We conducted a targeted literature review to understand the approaches that have been used for developing education materials for communities. We reviewed the literature and distilled key elements into our PEARL guide for creating culturally appropriate education materials. PEARL consists of five elements: Plain language and understandability, Explicit data, statistics, and graphs, Affirmative framing, Representative content, and Local connection. PEARL is a modern comprehensive guide that researchers can use for creating culturally sensitive materials. It is designed to guide researchers develop educational materials who have little to no experience in community engagement.

Misunderstood terms and concepts identified through user testing of educational materials for fragile X premutation: “Not weak or fragile?”

“…Overall, our findings underscore the importance of incorporating user testing into the development of genetics educational materials to maximize the accessibility and value of genetics information across the intended population. To complement user testing by the members of the naïve target population, stakeholder engagement should be considered early in the materials development process to inform content and increase relevance to the target audience (Haynes et al, 2022; Miller et al, 2015).…”

“…We recommend that developers of educational materials use a structured approach for material development and follow best practices and adult learning theory to the extent possible, with the expectation that complex genetic topics may require compromise and balance; that is, the ideals of simplicity and self‐direction versus the additional detail and sequential ordering that may best improve understanding. Existing tools and guidance, such as the Patient Education Materials Assessment Tool (PEMAT) and the PEARL rubric, are recommended to evaluate materials (Haynes et al, 2022; Shoemaker et al, 2014), Finally, user testing should be conducted in iterative rounds to allow for refinement.…”