Information needs and preferences of low and high literacy consumers for decisions about colorectal cancer screening: utilizing a linguistic model

Context The use of written decision aids (DAs) in clinical practice has proliferated. However, few DAs have been developed for low literacy users, despite this group having low knowledge about healthcare and lacking involvement in health decisions. Objective To explore the information needs and understanding of adults with varying literacy in relation to colorectal cancer screening, and to consider their responses to two versions of a decision aid. Participants Thirty-three men and women aged 45-74 years were recruited from Adult Basic Education classes (n = 17) and University Continuing Education programs (n = 16). Methods We used qualitative methods (in-depth, semi-structured interviews) to compare and contrast the views of adults with lower and higher literacy levels, to gain a better understanding of how people with lower literacy value and interpret specific DA content and components; and determine whether needs and preferences are specific to lower literacy groups or generic across the broad literacy spectrum. Results Regardless of literacy perspective, participants' interpretations of the DA were shaped by their prior knowledge and expectations, as well as their values and preferences. This influenced perceptions of the DAs role in supporting informed decision making. A linguistic theoretical model was applied to interpret the findings. This facilitated considerations beyond the traditional focus on the readability of materials. Conclusion Decision aids developers may find it useful to apply alternative approaches (linguistic) when creating DAs for consumers of varying literacy.