Working together to build an international aphasia awareness campaign.

The researchers wanted to build one plan, together with others.

• This plan is for an aphasia awareness campaign.
• People across the world can use this campaign.

Three (3) groups of people helped design the campaign.

1. People with lived experience of aphasia.
2. People from aphasia, stroke, health promotion and brain rehabilitation organisations.
3. Experts in media, marketing and putting plans into action. 

This was a co-design project.

• People with aphasia and others worked as partners with the researchers.
• Everyone helped make decisions.
• The researchers and co-designers came from seven (7) different countries. 

The co-design team's desired outcome was:

'One day the world's population will understand aphasia and all people with aphasia will be treated with respect and kindness.'

• The campaign is for the general public.
• The campaign explains what aphasia is, and what it is not.
• The campaign tells people how to help someone with aphasia.
• The campaign tells people where to learn more.
• The campaign has a short saying: Recognise, Respond, Respect.
• The co-design team also made a plan to put the campaign into action. 

• Many people around the world do not understand what aphasia is.
• This problem has not improved in the last twenty (20) years.
• Older campaigns were not coordinated between countries.
• Older campaigns did not include enough people with aphasia in the planning.
• So, a new campaign was needed that is: 

              1. Based on evidence.

               2. Planned with people with aphasia.

• People with aphasia helped build this plan as equal partners.
• Their input shaped what the future campaign will say about aphasia.
• The plan makes sure the campaign will show that people with aphasia are intelligent.
• The plan makes sure the campaign will show how to treat people with aphasia with respect and kindness. 

• The co-design team held eighteen (18) online workshops. 
• The workshops happened over six (6) rounds.
• The workshops happened over zoom (video call).
• The workshops were recorded.
• Researchers looked at patterns in what people said and shared these notes with the co-designers.
• The co-design team talked until they agreed on a plan everyone could accept.
• If they could not agree, the views of people with aphasia came first. 

n/a

This study is part of a bigger research project to design an international aphasia awareness campaign.

• Two earlier studies came before this one.
• Study one (1) asked people about their views on aphasia awareness.
• Study two (2) asked people what should be the priorities for a worldwide aphasia campaign.
• Together, these two (2) studies included of 466 people from forty (40) countries.
• This project used the information from study one (1) and study two (2) to co-design the actual aphasia awareness campaign. 

There was little risk for the co-designers who took part in this research.

People were supported with:

• Easy to understand information
• Supportive communication strategies
• Being able to take breaks when they needed. 
   

The team looked for a mix of people with different:

• ages
• countries
• languages 
• types of experience

People needed to have an interest in aphasia awareness, or expert skills.

• Fifteen (15) people worked together as co-designers.
• They came from seven (7) countries: Australia, Cyprus, Denmark, India, Switzerland, the UK and the USA.

The core research team:

• One (1) PhD student and speech pathologist.
• Three (3) researchers and speech pathologists.
• Two (2) people with lived experience of aphasia: one (1) person with aphasia and one (1) family member. 

The co-design team:

• Three (3) people with lived experience of aphasia: two (2) people with aphasia and one (1) family member. 
• One (1) person was from a national aphasia association and a neurologist. 
• One (1) person was from the World Federation of Neurorehabilitation and a neurologist. 
• One (1) person was from a national stroke organisation and a speech pathologist. 
• One (1) person was an expert in media and marketing and a family member of a person with aphasia.
• One (1) person was an expert in putting plans into action and a speech pathologist. 
• One (1) person was an expert in health promotion and a social worker. 

The team wanted to work together with people, not study them. This is called co-design.

• Working with people who have lived experience often leads to better, more useful results.
• Co-design has worked well in other aphasia research before.
• The team used online workshops because the co-designers lived in many different countries. 

The workshops were held from August 2023 to February 2024. 

The research took place online. 

• An Australian Government Research Training Program Scholarship awarded to Dr Claire Bennington.
• Support from the Queensland Aphasia Research Centre, funded by the Bowness Family Foundation and an anonymous donor.
• A Health Translation Queensland Consumer and Community Involvement Microgrant.
• A/Prof Sarah J Wallace received funding from the National Health and Medical Research Council Emerging Leadership Investigator Grants (1175821 & 2032983).

• The co-design team was small.
• Most workshops were held in English.
• Some experts were missing from the co-design team, such as advertising and design experts.
• People from lower-income countries were not well represented. 

• The research team worked with the same co-designers for six (6) months.
• The team checked ideas using notes, recordings and videos.
• The team shared meeting notes with co-designers to check they were correct.
• The team used aphasia-friendly materials in the research, so everyone could take part fairly. 

The team plans to develop the international aphasia awareness campaign.

• The team will seek funding.
• The team needs to translate the campaign into different languages.
• The team needs help from media and marketing experts.

Then, the team can launch the international aphasia awareness campaign everywhere at the same time. 

You can ask the lead researcher, Dr Claire Bennington for more information.

Her email is c.bennington@uq.edu.au