What does it mean to be aphasia aware? An international survey about aphasia awareness

• What people living and working with aphasia think about aphasia awareness.

• What people living and working with aphasia have done to raise awareness.

• What problems people met trying to raise awareness.

• What helped people raise awareness. 

Two online international surveys

We analysed results from:

• 105 people living with aphasia from 13 countries

• 306 workers from 37 countries

• A total of 411 participants from 39 countries 

Aphasia awareness was very important to both groups. The main reason given by both groups was: People with aphasia face barriers to communication and information every day. 

Both groups thought aphasia awareness means:

1. Educating people about aphasia
2. People know how to communicate with people with aphasia
3. People understand the condition “aphasia”

To be “aphasia aware,” both groups thought people need to know:

1. Aphasia does not affect intelligence
2. What helps people with aphasia to communicate
3. The impact of aphasia

Both groups felt an aphasia awareness campaign should:

1. Educate people about aphasia
2. Change the way people communicate with people with aphasia

15% of people living with aphasia and 31% of workers said they had run an aphasia awareness campaign.

The most common awareness raising activities were:

1. Giving talks
2. Social media posts
3. Displaying posters
4. Sending emails
5. Writing articles for newspapers or magazines
6. Holding fundraising events
7. Radio interviews
8. Making a YouTube video or similar
9. TV interviews
10. Writing to a politician

Both groups thought the most effective activities were:

1. Giving talks
2. Social media posts

The most common target audiences for people living with aphasia were:

1. Friends
2. Healthcare workers
3. Family
4. Health service organisations, such as hospitals or rehabilitation centres
5. The general public.

The most common target audiences for workers were:

1. The general public
2. Healthcare professionals
3. Family members of people with aphasia
4. Caregivers of people with aphasia

Workers gave many details about campaigns they had run. These included:

1. How they planned their campaign
2. The campaign goal
3. Key message
4. Messenger
5. Communication channels
6. Context for the campaign (such as the timing and length)
7. If it was successful
8. If it was evaluated
9. The cost
10. If it was funded, and if so, how.

What made raising awareness hard

People living with aphasia said:

• My aphasia 
• Stigma / Hidden disability
• Lacking confidence to speak
• Access to audience
• Lack of time / resources
• Lack of knowledge of how we can help
• Fatigue
• Transport and organisation

Workers said: 

• Lack of time / funds / resources
• Lack of skills 
• Lack of interest in general public in understanding conditions which do not concern them – aphasia is not a “hot topic”
• Lack of understanding about the size of the problem
• Lack of continuity
• Competition from other causes
• Cultural issues

What helped raise awareness

People living with aphasia said:

• Speeches in public – telling my story
• TV commercial
• Face to face conversations
• Conferences hybrid / in person
• Photos/paintings/music
• Famous persons as example
• Generosity of others
• Word of mouth 
• Social media

Workers said:

• Famous people talking about aphasia  
• Attitudes of others 
• Passion and drive to raise awareness
• Support from employers and colleagues
• Support of other / larger organisations / charities – bigger voice
• Support of marketing and communications professionals
• Funding
• Videos 
• Social media

Low aphasia awareness is a global problem

This research shows how important aphasia awareness is and why.

It has collected a lot of useful information about raising awareness.

This will be used to develop an international aphasia awareness campaign.

Two online international surveys

Two people with lived experience of aphasia guided this research.

Not applicable

More than 20 studies in 19 countries show that public awareness of aphasia is low.

Researchers suggested possible reason why aphasia awareness remains low:

1. Campaigns have not had a unified and compelling message
2. Campaigns have not been coordinated across organisations and campaigns
3. Campaigns tend to target people who are already aware of aphasia
4. Campaigns are not informed by theory or research
5. People living with aphasia and health-care professionals are not included in their design
6. The impact of campaigns has not been evaluated. 

There was a risk people would find completing the survey:

• tiring
• upsetting

For people living with aphasia:

• Identify as having aphasia of any cause, or
• Be a family member, friend or carer of a person diagnosed with aphasia

For workers:

• Have current or prior experience working with people with aphasia

All participants:

• Be 18 years old or more
• Be able to complete an online survey alone or with support
• Be able to communicate in English well enough to complete the survey
• Be able to give consent

For the survey for people living with aphasia:

 66 People with aphasia

23 Spouses / Partners of a person with aphasia

12 Family members of a person with aphasia

1 Friend of a person with aphasia

3 Carers of a person with aphasia

For the survey for workers:

223 Clinicians

6 Healthcare assistants

16 Leaders of an Aphasia Organisation or Aphasia Centre

68 Researchers

39 Volunteers

17 Other roles

We wanted to reach a wide international audience in a short time.

We didn't have funding to translate the surveys into other languages.

Our research advisors living with aphasia helped to make the surveys relevant and accessible for people with aphasia.

March - May 2022.

Online

Claire Bennington is supported by an Australian Government Research Training Program Scholarship.

Emma and Kim Beesley are funded by the Queensland Aphasia Research Centre, which is funded by the Bowness Family Foundation and an anonymous donor. Sarah J. Wallace is supported by the National Health and Medical Research Council under an Emerging Leadership Investigator Grant (1175821).

The surveys were only in English. This means it would have been more difficult for people with aphasia who did not speak English as their first language to complete them. 

The lack of translations likely affected who could take part.

Responder bias is an issue with any survey. People who felt strongly about aphasia awareness were more likely to complete the survey.

Yes. The survey development was guided by a checklist. (Checklist for Reporting Results of Internet E-Surveys (CHERRIES; Eysenbach, 2004)

The findings will help develop an international aphasia awareness campaign.

Further research should:

1. identify priorities for an international campaign
2. co-design an international campaign

View these slides or contact Claire Bennington. Email: c.bennington@uq.net.au