Supporting adults with lower literacy to engage in decisions about their health: Taking a health literacy approach

Abstract

Background: There are widespread calls for shared decision-making in healthcare among all sectors of the community. However, to date, there has been little attempt to address this in lower literacy populations. Aim: To investigate ways to train adults with lower literacy to be involved in decision-making about their treatment or care using an asset-based health literacy approach. Methods: Formative and summative evaluation of a novel shared decision-making training program designed for adults with lower literacy and delivered in Australian adult basic education settings. The program was evaluated using a matched cluster-randomised controlled trial with two qualitative sub-studies. Results: A total of 308 participants from 28 adult education classes were enrolled in the program. The majority of participants had limited health literacy and spoke a language other than English at home. The shared decision-making training program served two key functions; (i) it stimulated awareness among participants that patients have the right to be involved in decision-making concerning their treatment and care, (ii) it developed understanding and skills (numerical risk; shared decision-making terminology) for question-asking and decision-making. The content of the shared decision-making program was acceptable to learners and teachers, with teachers noting congruence in shared decision-making content and the institutional commitment to learner empowerment in adult education. Discussion: This thesis provides the first evidence of the potential impact shared decision-making training can have for adults with lower literacy, indicating that rigorously-developed, asset-based health literacy programs can facilitate knowledge and skill development and question-asking, and elucidate the right consumers have to be involved in decision-making.