What is aphasia? Results of an international survey

A pilot study exploring public awareness and knowledge of right hemisphere communication disorder compared with aphasia and stroke in Northwest London, UK

“…This difference may have been due to the fact that Mavis's participants were patients and visitors at a neurology ward and so were more likely to have exposure. It is unclear why the level of public awareness of aphasia was higher in this study than the earlier studies on public awareness of aphasia, other than the more recent Patterson et al, Similar to the awareness results, the percentage of participants who had knowledge of aphasia was higher (as indicated by a score of 50% or above) than previously published studies (Patterson et al, 5.7%, McCann et al 2012: 1.5%;Simmons-Mackie et al 2002: 5.4%; Code et al2001: 5%). Comparisons of knowledge levels could not be made with the current study and the study by Mavis (2007) or Flynn et al, (2009) as, while knowledge was explored in these studies, an overall knowledge score was not calculated.…”

“…These questions usually required the participant to select from a list of causes and characteristics that were most commonly associated with aphasia. It is important to distinguish between awareness and knowledge since they are not the same, as can be seen from the scores in these aphasia surveys where people's awareness of a condition was routinely higher than their knowledge (Code, et al, 2001;Flynn, et al, 2009;Mavis, 2007;McCann, et al, 2013;Patterson, et al, 2015;Simmons-Mackie, et al, 2002).…”

“…While no previous research has been conducted investigating public awareness and knowledge of RHCD, a handful of researchers around the world have investigated public awareness and knowledge of aphasia (Code, Katz, Petheram, T., & Granzfried, 2013;Code, et al, 2001;Flynn, Cumberland, & Marshall, 2009;Kent & Wallace, 2006;Mavis, 2007; McCann, Tunnicliffe, & Anderson, 2013;Patterson et al, 2015;Simmons-Mackie, Code, Armstrong, Stiegler, & Elman, 2002). In most of these studies members of the public were considered to have an awareness of aphasia if they indicated that they had heard of the term, and they were considered to have knowledge of the disorder if they were able to correctly answer a series of questions about the disorder.…”

“…They were deemed to have knowledge of Parkinson's dieases if they used the words "brain", "tremor" or a variation of these. Knowledge of aphasia was determined in a different way to Parkinson's disease but in the same way as in the study by Simmons-Mackie (2002), in that participants selected symptoms from a list of eight. Unlike Simmons-Mackie (2002), McCann (2013 specified a clearer scoring method in which each participant would be given one point for a correct response and lose one point for each incorrect response.…”

“…A number of studies have explored public awareness and knowledge of aphasia of participants who were recruited from shopping malls and public spaces in the USA (Hawaii, Louisiana and California), UK (Exeter), Canada (Ontario) and Australia (Sydney) (Code, et al, 2001;Kent & Wallace, 2006;Patterson, et al, 2015;Simmons-Mackie, et al, 2002).…”