Do People With Aphasia Want Written Stroke and Aphasia Information? A Verbal Survey Exploring Preferences for When and How to Provide Stroke and Aphasia Information

Abstract

A phasia can be defined as "the loss or impairment of language function." 1(p49) It is a multimodality disorder that manifests in difficulties with speaking, reading, and writing.1 Various studies have investigated the prevalence of aphasia resulting from stroke, estimating between 10% to 18% of stroke survivors will have aphasia long term.2-4 Given the language diffi culties encountered by people with aphasia, there is a growing recognition of the need to produce aphasia-friendly written health information.5-9 Aphasia-friendly information incorporates many of the recommendations for how best to format written information for stroke patients 10,11 but to an exaggerated degree. 12Preliminary research found that people with aphasia comprehended more health information when standard health information brochures and booklets were reformatted to contain simple words and short sentences, larger font, white space, and pictures. 6 Before further pursuing research in the area of aphasia-friendly text formatting, it is fundamental to determine whether people with aphasia wish to receive health information in written formats. "Virtually every variety of aphasia entails some diffi culty in oral reading or reading comprehension." 13(p60) Given this, and the wide variety of media available for patient education (eg, DVDs, Websites, verbal information), it should not be assumed that people with aphasia desire to receive health information in a written Purpose: Written health information can be better comprehended by people with aphasia if it is provided in an aphasiafriendly format. However, before pursuing research in the area of text-formatting for people with aphasia, it must be determined whether people with aphasia consider it helpful to receive health information in the written media. This study, therefore, aimed to determine the following: whether people with aphasia consider it important to receive written stroke and aphasia information; when people with aphasia prefer to receive this information; and what their preferences are for health information media. Method: Surveys were administered in a face-to-face interview with 40 adults with aphasia. Participants were purposefully selected using maximum variation sampling for a variety of variables including aphasia severity, reading ability, and time post stroke. Results: Participants thought it important to receive written information about both stroke and aphasia. They considered it helpful to receive written information at several stages post stroke, particularly from 1 month onwards. The largest proportion (97%) of participants identifi ed 6 months post stroke as the most helpful time to receive this information. Written information was the most preferred media at participants' present time post stroke (M = 39 months; range, 2-178 months). Videos/DVDs were the most preferred media during the 6 months immediately following the stroke. Conclusion: Despite reading and language diffi culties, participants considered written information to be important, hence people wi...

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

“…Information sheets and consent forms were designed using "aphasia friendly" principles to maximise comprehension (Rose, Worrall, Hickson, & Hoffmann, 2010). Translations of written materials were prepared for non-English speaking participants.…”

Assessing the Suitability of Written Stroke Materials: An Evaluation of the Interrater Reliability of the Suitability Assessment of Materials (SAM) Checklist

“…15 The majority of stroke patients and their carers would like to receive written information, 16,17 although dissatisfaction with the quality of the written materials provided has been identifi ed as a barrier to adequate stroke education by patients, 18 carers, 18 and stroke health professionals. 19 Despite the reading diffi culties that are often experienced by patients with aphasia, Rose et al 20 examined the information preferences of 40 patients with aphasia and found that most wished to receive written materials. For all patients, written health education materials can only be of benefi t if they can be understood by the recipient.…”

Komunikacja w grupie pacjentów z zaburzeniami świadomości – wnioskiz projektu InteRDoCTor

“…What more patients with aphasia still experience various problems, e.g. mobile phone use can be problematic [40], some of them still need printed education materials in formats preferred by patients with aphasia [41,42,43].…”