Written stroke and aphasia information: Preferences of people with aphasia

Despite the documented benefits of providing health information to stroke patients, there is evidence indicating that people who have aphasia are poorly informed about both their stroke and aphasia. People with aphasia have been found to experience informational barriers in that information, if provided, is often presented in a way that cannot be understood by recipients with acquired language and reading difficulties. For health information to be optimally effective it needs to be provided in a format that the recipient welcomes and can understand. As printed education materials (PEMs) are a commonly used media for imparting health information, health professionals require evidence based guidance to design these documents in acceptable formats for people with aphasia. One component of obtaining this evidence is to explore the formatting characteristics that people with aphasia consider to be barriers and facilitators to reading PEMs. Therefore, the overarching aim of this research was to explore the preferences of people with aphasia for formatting stroke and aphasia PEMs. A series of five studies was conducted. Forty adults with aphasia post stroke participated in Studies 1 to 4. Participants were purposefully selected using maximum variation sampling for a variety of variables including aphasia severity, reading ability, time post stroke, age, gender, and years of formal education. Study 1 surveyed participants to establish if they recalled receiving written information about stroke and aphasia, and to obtain insight into where people with aphasia sourced this information, and which health professionals provided it. Only 14 participants (35.9%) reported receiving written information about both stroke and aphasia. The rehabilitation setting was the main location for written stroke and aphasia information provision, with speech-language pathologists most frequently being identified as the health professionals who provided this information. Given the reading difficulties associated with aphasia, Study 2 aimed to determine if people with aphasia considered it important to receive written stroke and aphasia information, when people with aphasia preferred to receive this information, and to establish their preferences for health information media. Despite having reading difficulties, participants reported written information to be important, and considered it helpful at several stages post stroke, particularly from 1 month onwards. The largest proportion of participants (97.1%) identified 6 months post stroke as a helpful time to receive this information. Study 3 aimed to obtain the preferences of people with aphasia for PEM formatting. This qualitative study used semi structured in depth interviews to explore characteristics considered to be barriers and facilitators to reading stroke and aphasia PEMs. Forty five facilitator and 46 barrier codes were identified using qualitative content analysis and grouped into two categories; 1) content characteristics, and 2) design characteristics. Study 4 expanded upon the findings of Study 3 by further exploring the design preferences of people with aphasia for stroke and aphasia PEMs. The primary objective of this study was to obtain the preferences of people with aphasia for: 1) the representation of numbers; 2) font size and type; 3) line spacing; 4) document length; and 5) graphic type in stroke and aphasia PEMs. Findings from Studies 3 and 4 have led to the compilation of evidence based formatting recommendations for people with aphasia. Several participants in Study 4 identified a preference for including photographic illustrations in stroke and aphasia PEMs, compared to other graphic types such as line drawings and pictographic symbols. Therefore, a fifth study evolved to investigate preferences for graphics and if graphic type influenced reading comprehension. A subsample (n = 22) of the larger participant group with aphasia, and 15 of their significant others participated in this study. All participants completed a purposefully developed cloze reading comprehension task, with multiple choice response options. Response options contained either: 1) no illustrations; 2) black and white line drawings; or 3) colour photographs. In addition, all participants completed a face-to-face graphic preference survey. There were no significant differences on the reading comprehension task, for both participants with aphasia and those without, between the number of paragraphs correctly completed in the set with no graphics, line drawings, and photographs. However, significantly more participants with aphasia reported that they needed pictures to understand writing, and all participants with aphasia preferred PEMs to contain graphics. In summary, current practice in written health information provision is not meeting the needs of people with aphasia. Information about stroke and aphasia should be provided at several stages post stroke, and in a range of formats. The research findings have implications for when and how health professionals provide information, and provides consumer driven guidance for the design of written information for people with aphasia