Can adults with low literacy understand shared decision making questions? A qualitative investigation

Participation in shared decision-making (SDM) may be difficult for adults with lower literacy. Tools to support consumers to engage in SDM are rarely designed for or evaluated with adults with lower literacy and/or poor English language.

Qualitative interviews were conducted with 26 adults with lower literacy and/or poor English language skills to investigate (a) whether participants where able to read and understand two generic SDM consumer support tools (Smart Health Choices and AskShareKnow question-sets), (b) which question-set was easier for participants and, (c) perceived usefulness of the question-sets and barriers to use. Interviews were analysed using Framework Analysis.

Participants had difficulties understanding terms embedded within both the AskShareKnow and Smart Health Choices questions. Our findings suggest that the AskShareKnow question-set was easier for our participants than the Smart Health Choices questions, and clarification using a structured response was reasonably effective. While participants appreciated the usefulness of the questions, they identified important barriers to use.

Generic question-sets alone are not sufficient to support SDM for adults with lower literacy and/or poor English-language skills.

To ensure that SDM is accessible to all, we must consider how best to support adults with low literacy and/or poor English-language skills to participate in this process.