The Public Awareness of Aphasia Around the World

Globe with flagsImproving understanding of the public awareness of aphasia in different cultures and communities is particularly relevant to efforts to improve and extend services, to increase research support and to encourage improved social inclusion of aphasic people.

There is a relationship between the services that are provided for a condition, the research funds invested in that condition, and the level of public awareness of that condition.

For instance, there is a much lower frequency of occurrence of the word ‘aphasia’ in US newspapers compared to other comparable conditions, like Parkinson’s disease, despite the fact that aphasia occurs more often (Elman et al., 2000).

Frequency of occurrence of a condition in the media is related to the levels of public knowledge and the funding of services for that condition.

Therefore, the targeting of awareness raising, that is, education and raising awareness in those who come into contact most with aphasic people in different countries and cultural contexts is important.

In 2000 Speakability in the UK conducted a telephone survey of 1005 respondents balanced for class, age, sex and regions of the UK, who were asked what they knew of aphasia. Three percent responded appropriately. When provided with a basic definition of aphasia, 21% knew or had known someone with aphasia, and this figure increased with age.

A more recent phone survey was carried out in 2008 with 2000 respondents in the UK by the Aphasia Alliance. Over 90% had never heard of aphasia and 79% could not distinguish aphasia from ‘skin disease’ or ‘a fruit’.

Researchers around the world are attempting to discover what the general public know about aphasia so that we can identify the best ways to raise the public awareness of the condition. In our research study we have used the same survey method conducted in shopping centres, in order to gauge what people know about aphasia.

So far surveys have been carried out with shoppers in Argentina, Australia, Croatia, England, Greece, Norway, Slovenia, and the USA.

Shoppers were surveyed using translations of the same questionnaire and were asked, not only if they had heard of aphasia, but were also asked questions to find out how much they knew and where and how they had heard about aphasia.

We found significant variability in knowledge of aphasia among the countries surveyed.

Between 60% and 9.25% of shoppers said they had heard of aphasia.

In the English-speaking countries, we found that between 10% and 18% said they had heard of aphasia, but only between 1.5% and 7.6% had even some basic knowledge of aphasia. We also found that:

  • more females knew something about aphasia than males
  • older people were more likely to have heard of itthose with some knowledge of aphasia were significantly younger.

In the graph below you can see that levels of awareness vary a great deal between countries. We found that, overall, an average of 7.34% of the samples have some knowledge of what aphasia is.

Levels of awareness of aphasia between countries.

Levels of awareness of aphasia between countries.

Variation in awareness may be related to:

  • local media impact
  • regional variations in how often aphasia occurs
  • occupation and educational variations
  • cultural differences in attitude to disability.

Such information is vital for targeting awareness raising.

Where Do People Hear About Aphasia?

We wanted to find out where people had heard of aphasia, if they had, so that we could target awareness raising more usefully.

Where do people hear about aphasia

Where do people hear about aphasia

You can see from this graph that people hear about aphasia mainly through:

  • the media
  • their work
  • family or friends who have aphasia

People who were most likely to have heard of aphasia were mainly professionals like teachers, nurses, therapists, managers and administrators.

This information provides further evidence of differences in levels of awareness of aphasia in different cultures. Our combined sample of 3580 is larger than previous surveys and researchers in other countries are currently conducting similar surveys.

Increasing Awareness & Knowledge of Aphasia to Reduce Communication Barriers & Improve Access & Inclusion

The findings in our study highlight the importance of raising awareness and providing education in order to:

  • improve resources and services
  • increase access
  • reduce communication barriers for people with aphasia

Our surveys provide some clues as to where to aim awareness raising and education and to whom. There are certain groups in the community

  1. Service Providers’ in pubs, cafes, restaurants, shops, churches, cinemas, public transport, community venues.
  2. The Media: many people hear about aphasia through TV and radio, newspapers and magazines. The media is always hungry for those ‘human interest’ stories, and we can do a great deal to inform and educate the public through the media.
  3. Professionals that come into contact with people with aphasia. Health and social services, residential homes and hospitals, as well as conversation partner training, lobbying & advocacy with ‘purse holders’ who provide the funds for services.

A large number of people know about aphasia because a family member of friend has aphasia. Conversation partner training, relatives’ workshops, and family counseling can do a lot to improve the lives of people with aphasia.

What do you think can be done to improve the level of public awareness of aphasia?

If you would like to join this research and help find out about levels of awareness in your own country, state or city, then get in touch with Chris Code at c.f.s.code@exeter.ac.uk.

Researchers who have so far been involved in conducting surveys are:

Beth Armstrong, Edith Cowan University, Australia

Chris Code, University of Exeter, UK

Roberta Elman, Aphasia Centre of California, USA

Line Haaland-Johansen, Bredtvet Resource Centre, Oslo, Norway

Ana Leko & Tatjana Prizl-Jakovac, Dept of Speech & Language Pathology, University of Zagreb.

Ilias Papathanasiou, Technological Educational Institute of Patras, Greece,

Silvia Rubio-Bruno, María de la Paz Cabana, Maria Marta Villanueva, Fundación, Argentina de Afasia, Argentina,

Nina Simmons-Mackie, Southeastern Louisiana University, USA

Nada Zemva, University Rehabilitation Institute.Ljubjana Slovenia

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