What does good aphasia care look like and what needs to be improved?

1. What does good aphasia care look like?

2. How can we measure good aphasia care?

3. What areas of care are most important to improve?

The researchers used a process to help people reach agreement. This included:

• An online survey where people voted on ideas (called an e-Delphi exercise)
• In-person or virtual workshops where people met to discuss and decide together

Step 1: The research team found 23 recommendations for best practices in aphasia care. Then, 26 stroke survivors and 81 healthcare workers rated which ones were most important. They narrowed the list down to 10 key recommendations.

Step 2: A smaller group of 4 stroke survivors and 17 healthcare workers worked together to agree on 11 quality standards. These standards covered six areas:

• Assessing aphasia (2 standards)
• Giving people with aphasia information they can understand (3 standards)
• Training family members and caregivers how to communicate better (3 standards)
• Setting goals with people with aphasia and families (1 standard)
• Making sure care focuses on what patients and families need (1 standard)
• Providing speech therapy (1 standard)

Step 3: An even smaller group of 5 stroke survivors and 7 healthcare workers decided which three things should be done first:

1. Testing people properly to understand their aphasia
2. Giving information in a format that's easy for people with aphasia to understand
3. Providing speech therapy 

Before this research, there were no agreed-upon standards for what good aphasia care should look like after a stroke.

• These 11 quality standards and 3 priorities are an important first step.
• They give aphasia services a clear way to measure how well they're doing and make improvements that matter to people with aphasia.

The researchers completed three phases of work.

Phase 1: Finding and Rating Recommendations

First, the team found recommendations that had strong research support or that matter to people who have aphasia. Then, people with aphasia and healthcare workers rated how important each recommendation was. They did this through an online survey that happened twice (called an e-Delphi survey). After getting all the ratings, the researchers used a special voting system to rank which recommendations were most important and most realistic to put into practice.

Phase 2: Creating Quality Standards

Next, the team took the top recommendations and turned them into quality standards. These are specific ways to measure if aphasia services are doing a good job. People with aphasia and healthcare workers met together to review these standards and vote on which ones to use.

Phase 3: Deciding What to Do First

Finally, People living with aphasia and healthcare workers discussed which quality standards should be the top priorities. After their discussion, they voted anonymously (without anyone knowing who voted for what) to choose the most important ones to focus on first.

Talk to your speech pathologist or doctor.

1. Aphasia is common and serious. About 1 in 3 stroke survivors get aphasia (trouble speaking, understanding, reading, and writing). They face higher healthcare costs, worse care quality, and lower quality of life than other stroke survivors.
2. Good guidelines exist but aren't being followed. There are clear best practice guidelines for aphasia care, but big gaps exist in areas like testing, providing understandable information, and giving enough therapy.
3. The main problem is lack of measurement. Services don't regularly check if they're following best practices. Without tracking their performance, they can't identify problems or know what to improve first.
4. Regular checking and feedback could help. Research shows that when healthcare services regularly measure their care quality and make changes based on the results, patient outcomes improve. This approach could work for aphasia services too.
5. We need input from people with aphasia and clinicians. To know what areas of aphasia care to measure and prioritise, we must ask the people who matter most: stroke survivors with aphasia, their families, and healthcare workers. This increases the chances that improvements will actually work.

There are no risks for this research.

1. Stroke survivors with aphasia in Australia

2. Family members of people with aphasia

3. Healthcare professionals and researchers

Phase 1: 107 people total

• 26 stroke survivors with aphasia
• 81 healthcare professionals

Phase 2: 21 people total

• 4 stroke survivors with aphasia
• 17 healthcare professionals

Phase 3: 12 people total

• 5 stroke survivors with aphasia
• 7 healthcare professionals

To ensure that everyone who has an interest in quality aphasia care was represented.

The research took place over approximately 8 months, from November 2021 to June 2022.

Australia

This research was funded by a combination of university grants, government scholarships, fellowships, and research center support. Multiple funding sources from different organisations supported various aspects of the project.

The main problems were:

• having fewer stroke survivors than healthcare workers involved
• the results being specific to Australia and
• the need to update the priorities in the future.

The researchers combined three important elements to ensure the results could be trusted:

• Scientific research evidence
• The opinions and experiences of stroke survivors with aphasia
• Pre-set criteria for what can realistically be put into practice

Equal Voices

People with aphasia and healthcare workers had an equal say in the voting and decision-making process. Their voices were balanced and given equal weight.

Why This Matters

• Because this study included both research evidence and input from the people who matter most—and gave them equal power in the decisions—the results are trustworthy and credible.
• Healthcare services can feel confident about using these 11 quality standards and 3 priorities to improve their aphasia care.

→ Measuring care in health services routinely

→ developing improvement strategies

→ implementing changes.

https://shrs.uq.edu.au/research/research-centres-and-units/qarc/measures