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

Obtaining health information and resources can influence an individual's (a) access to services, (b) interactions with health care providers, and (c) ability to manage one's own health needs. The purpose of this study was to gather the perceptions of consumers living with aphasia about resource availability and information needs.

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.

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.

Understanding how people living with aphasia seek information may allow us to better tailor access to resources in the future.