Understanding important changes in aphasia recovery.

The researchers wanted to find out:

1. What are important changes in aphasia recovery?
2. Which answer on our rating scale shows  small but important changes to people with aphasia?

We met with people with aphasia and speech pathologists online.

• We asked their opinions.
  

People with aphasia and speech pathologists said that important changes are:

1. Small continuous improvements.
2. Different for every single person.
3. Measured by progress towards personal goals.
4. Influenced by personal factors like how old someone is.

All the participants agreed on a rating scale answer that shows a small but important changes to people with aphasia.

• 'Slightly improved' is the answer that shows important change for people with aphasia in the first six months after stroke.
  

The Collaboration of Aphasia Trialists is an international group of aphasia researchers.

• In 2021, Collaboration of Aphasia Trialists developed a list of important research.
• The ideas on the list came from people with aphasia, family members, and healthcare workers.
• One of the important ideas was to understand important changes in aphasia recovery.

So we wanted to find out the opinions of people with aphasia and speech pathologists.

It is important for people with aphasia to set goals together with a speech pathologist.

Personal goals may help you make meaningful changes in your aphasia recovery.

Celebrating small improvements may support your motivation in rehabilitation.

We held online zoom meetings.

• Two (2) meetings were focus groups with people with aphasia.
• Two (2) meetings were focus groups with speech pathologists.

Then, we held one (1) consensus workshop for people with aphasia and speech pathologists.

• In the consensus workshop people gave opinions on the rating scale answers.
• People voted on the rating scale answer that shows important changes.
• Consensus was reached when at least 70% of people agreed on an answer.
  

This research did not include treatment.

Research tells us the most important information to measure in aphasia recovery is:

• Language.
• Communication.
• Quality of life.
• Emotional well-being.

But, we don't know how much change is important to people with aphasia.

Important changes are changes that make a meaningful difference. 

There were no risks to doing this research.

People with aphasia could take part if they had aphasia after a stroke.

Speech pathologists could take part if they worked in aphasia rehabilitation.

The people who took part were:

• Five (5) people with aphasia after stroke.
• Eight (8) speech pathologists.

All people were from Australia.

The research was done this way to understand people's opinions.

The research was done in April and May 2023.

The research was done online.

Money for this study came from a Medical Research Future Fund (MRFF 2021) -Cardiovascular Health Grant Opportunity.

The grant was awarded to Associate Professor Sarah Wallace.

The grant is called 'The right treatment for the right person at the right time. Driving high-value aphasia care through meaningful health system monitoring (MRF2016134).

The results only include the opinions of people who speak English.

People from different cultures or who speak different languages may have different opinions.

This is research about people's opinions.

We are asking 200 people with aphasia in hospitals to rate their changes on the rating scale.

We will use this information to help to make test results easier to understand.

Knowing about important changes will also help people with aphasia to make important decisions about treatments.

Email Sally Zingelman: s.zingelman@uq.edu.au