Priorities for an International Aphasia Awareness Campaign

What are the priorities for an international aphasia awareness campaign across key elements? These campaign elements were: 

• dream outcome/s
• goal/s
• target audience/s
• messages 
• messengers
• communication channel/s 
• context
• evaluation / measurement
• cost / funding

Qualitative focus groups (online)

Participants came up with 552 ideas for an international aphasia awareness campaign.

They prioritised 115 of these ideas. 

The top priorities across the key elements were:

Message 1. Branding and marketing tactics for the campaign message 2. Explain what aphasia is (and is not) and its impact 3. How to support communication with a person with aphasia
Dream Outcomes:  1. One day the world’s population will understand aphasia and all people with aphasia will be treated with respect and kindness. 2. Increased philanthropic funding to aphasia 3. Standard support for people with aphasia across all aspects of society
Target audiences: 1. Whole world / General public / community at large 2. Medical / nursing / hospital staff and GPs 3. Families / friends
Messengers: 1. Stories and faces of people with lived experience of aphasia 2. Celebrities/influencers 3. Aphasia associations
Communication Channels: 1. Mass media 2. Places where people cannot avoid it – where it would be hard not to see it. 3. Well-planned international hub that tackles the campaign in a coordinated manner
Context: 1. Model it on a campaign, such as the sunflower campaign or connect to this campaign 2. Link the campaign to something that already exists. 3. Repeated, regular/annual campaign
Cost and Funding: 1. Governments/governmental agencies/ministry of health 2. Philanthropists
Goal: 1. Reintegration of people with aphasia into society. Do not exclude people with aphasia.  2. Change
Evaluation/Measurement: 1. Quality and quantity 2. Duration and follow-up 3. Gallup public opinion poll 4. Return to work indicators for people with aphasia  

Poor aphasia awareness is a global problem.

More than 20 studies across 20 countries show that public awareness of aphasia is persistently low.

This is despite the best efforts of individuals, local services and aphasia consumer organisations around the world to raise awareness.

Poor aphasia awareness can result in:

• a lack of funding for aphasia services and research
• a lack of support and public empathy for people with aphasia and their families in their communities
• fewer opportunities to return to work, education, or to participate in social activities.

These results will guide another study to co-design an international aphasia awareness campaign.

The ultimate goal is to raise awareness of aphasia globally.

We ran online focus groups with:

(1) people living with aphasia (PLWA):

• people with aphasia,
• family members,
• friends, or
• carers of a person with aphasia

(2) people who work with people with aphasia (workers):

• clinicians,
• researchers,
• volunteers,
• leaders of aphasia centres
• leaders of aphasia, stroke, or brain injury consumer organisations.

We ran groups in 5 countries: Australia, Colombia, Denmark, Singapore and USA.

We used a modified nominal group technique to vote for priorities. 

Not applicable

Possible reasons why aphasia awareness is 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. 

(Simmons-Mackie et al., 2020)

There was a risk that thinking about their experience could cause some distress to people living with aphasia.

To be allowed to take part:

PLWA had to:

1. identify as having aphasia of any cause, or
2. be a family member/friend/carer of a person with aphasia.

Workers had to have experience working with people with aphasia (e.g., as a clinician, researcher, leader of a consumer organisation or aphasia centre, assistant, or volunteer).

All participants had to be:

1. aged eighteen or above,
2. able to take part in an online focus group independently or with support,
3. able to give consent, and
4. have access to the technology needed to take part in online groups.

Twenty-six people living with aphasia took part.

Twenty-nine workers took part.

Running the groups on Zoom (an online video conferencing platform) allowed people from different places to take part in the same group. People from different states were able to take part in both Australia and the USA.

November 2022 - June 2023

Online in Australia, Colombia, Denmark, Singapore and the United States of America.

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

Emma and Kim Beesley were funded by the Queensland Aphasia Research Centre, which is funded by the Bowness Family Foundation and an anonymous donor.

Sarah J. Wallace was supported by the National Health and Medical Research Council under an Emerging Leadership Investigator Grant (1175821).

This study involved focus groups in five countries from five continents (North America, South America, Europe, Asia, and Oceania).

We did not run any groups in Africa.

Yes. 

We developed a manual to make sure the same process was followed at each research site.

We used the same PowerPoint slides to guide to each focus group.

The manual and slides were translated into Danish and Spanish.

We checked the analysis by:

• referring back to the recordings for each group
• consulting with co-facilitators who collected the data to be sure the context was correctly understood and represented.

We used these processes to check the ideas within each element. This was checked again by a second rater from the research team.

The next steps are to co-design an international aphasia awareness campaign. 

1. See full article at https://doi.org/10.1080/09638288.2025.2510558

2. Email Claire Bennington at: c.bennington@uq.net.au 

3. See Aphasia CRE Seminar 53  https://www.youtube.com/watch?v=JZ3iUPFZS_Y&list=PLLfpMpQ8yga2-7b1KnY73bnpDDiWHRlXZ&index=3&t=1539s