The persistent needs of people living with aphasia: Results of a national survey

Our current knowledge about the information needs of people with aphasia comes primarily from small-scale qualitative studies. We distributed an electronic survey to consumers living with aphasia and professionals. There were 428 responses from across the United States. Both consumers and professionals rated information as “somewhat difficult to find”. The highest rated five topics were: how to keep improving; communication strategies; aphasia therapy techniques; coping strategies; and strategies for caregivers. There was an interest in receiving information through digital media such as webinars. The results have implications for national and regional efforts to provide information about living with aphasia

Aphasia Awareness Training for Emergency Responders: Train the Trainers

First responders rarely receive training on aphasia but they are more likely to encounter a person with aphasia (PWA) than someone with multiple sclerosis, cerebral palsy or muscular dystrophy (Will & Peters, 2004). Many of them do not know what aphasia is, much less how to communicate with a person with the disorder. This paper presents a unique Aphasia Awareness Training Program to educate police, firefighters and EMTs to understand aphasia, recognize signs of aphasia in emergency situations and communicate effectively with PWA.  Quantitative and qualitative data on the effectiveness of the program are discussed along with future implications

Aphasia United - A Unified Voice for Aphasia

Aphasia United is a new peak international organization that aims to bring together the global aphasia community and represent its voice to the World Stroke Organization. The aim of this paper is to describe the processes of development and the strategic direction of Aphasia United, and its proposed process for developing an international research agenda. Initial discussions and a summit have prioritized capacity building of consumer organization, building consensus around best practice, raising awareness and creating a governance structure as well as developing an international research agenda for aphasia. Opportunities for involvement are outlined

What people living with aphasia think about the availability of aphasia resources

PURPOSE: Obtaining health information and resources can influence an individual\u27s (a) access to services, (b) interactions with health care providers, and (c) ability to manage one\u27s own health needs. The purpose of this study was to gather the perceptions of consumers living with aphasia about resource availability and information needs. METHOD: An online survey of consumers in the United States was conducted about the availability of aphasia resources. Analysis of survey responses and comments formed the basis for focus group questions. Four focus groups consisting of persons with aphasia and their caregivers were conducted to explore the survey response themes more deeply. RESULTS: Survey respondents (N   =   302) rated aphasia resources as somewhat difficult to find. Topics ranked as most important by these respondents were (a) how to keep improving, (b) communication strategies, (c) aphasia treatment techniques, (d) coping strategies, and (e) strategies for caregivers. Survey comments and focus group themes suggested that accessing information is difficult, health care providers are not perceived to know about aphasia resources, and there is a lack of public awareness of aphasia that is a barrier to finding information and resources. CONCLUSION: Understanding how people living with aphasia seek information may allow us to better tailor access to resources in the future