Beyond the statistics: a research agenda in aphasia awareness

Background: An important goal of people living with aphasia, aphasia organizations and professionals who work with aphasia is increased awareness of aphasia by the public. However, surveys of the public awareness of aphasia around the world and over time suggest that public knowledge of aphasia is poor. Aims: The aim of this article is to examine the literature on aphasia awareness and aphasia awareness campaigns, and to propose a strategic research agenda to move awareness building forward. Main Contribution: Aphasia awareness campaigns appear to have had minimal impact on knowledge of aphasia by the general public. Potential problems with aphasia awareness building were identified including a lack of a unified and compelling message across awareness campaigns, lack of coordination across organizations and campaigns, tendency to target audiences already familiar with aphasia, failure to base campaigns on theory and research from disciplines such as marketing, health promotion and communication research, failure to involve people with aphasia, their families and health-care professionals in the co-design of campaigns and no evidence that the impact of campaigns has been evaluated. Conclusions: A strategic research agenda is needed in order to increase the effectiveness, co-design, and co-evaluation of aphasia awareness campaigns worldwide. The authors propose an international effort and comprehensive research agenda to address aphasia awareness.