Best Practice Guidelines for Aphasia - What do People with Aphasia and Family Members Think?

To ask people with aphasia and family members their opinions about the Aphasia United Best Practice Guidelines. The Aphasia United Best Practice Guidelines are international guidelines developed by aphasia experts around the world. The guidelines contain ten (10) recommendations. They are translated into twenty-nine (29) languages.

We wanted to ask people with aphasia and family members:

• Are the guidelines relevant to people with aphasia?

• Are the guidelines easy to understand?

• Are the guidelines complete (not missing important recommendations)?

Focus groups

All participants agreed the ten (10) recommendations were relevant.

Participants made lots of suggestions to make the guidelines easier to understand. Suggestions included:

• Explaining or giving definitions for technical terms

• Specifying who is a “qualified professional”

• Adding more details about when different aspects of care should occur

Participants suggested new important recommendations should be added.

People with aphasia identified these priorities for new recommendations:

• Increased awareness of aphasia

• Receiving a co-ordinated, comprehensive, consistent approach to care 

• Training and support to use technology

• Social support for maintaining relationships and friendships

• Psychological support (for example, help with depression and self-confidence)

• Support to build self-management skills for aphasia

• Information about prognosis (what will happen during recovery)

Family members identified these priorities for new recommendations:

• Person and family centred care

• Psychological support

• Social support (for example, information about aphasia groups)

• Receiving a co-ordinated, comprehensive, consistent approach to care

• Information about prognosis (what will happen during recovery)

• Increased awareness of aphasia

People with aphasia and family members can help design best practice guidelines. We want to make sure guidelines are relevant and easy to understand. 

Improving guidelines will help improve services for people with aphasia in the future. This research might not directly benefit you.

Focus groups using a modified Nominal Group Technique

There was no treatment included in this research.

Best practice guidelines help health professionals to provide the best possible care to people with aphasia. Aphasia United is an international group that seeks to improve aphasia services around the world. Aphasia United developed Best Practice Guidelines for Aphasia. These guidelines were based on knowledge of aphasia experts around the world. But people with aphasia and their family members were not included in developing the guidelines. People with aphasia and family members are also experts in aphasia. This research was needed to ask people with aphasia and significant others their opinions about the Aphasia United Best Practice Guidelines. 

No risks were reported.

People with aphasia had to be over 18 years old and live in the community. Family members could also participate. 

13 (thirteen) people with aphasia

10 (ten) family members of people with aphasia

Focus groups were held so people could discuss ideas. Nominal Group Technique was used to prioritise ideas. This helped identify what people thought was most important.

2020-2021

This research was conducted in Australia.

Sarah J. Wallace is supported by a National Health and Medical Research Council (NHMRC) Emerging Leadership Investigator Grant. This research was conducted with funding support from the Centre for Research Excellence in Aphasia Rehabilitation and Recovery (Aphasia CRE).

This research only included people with aphasia and significant others from Australia. It included only English speaking participants. There were no participants who were First Nations people. Most participants lived in major cities and had a milder aphasia. Further research is needed to include international perspectives, people from different cultural backgrounds (culturally and linguistically diverse populations) and people with more severe aphasia. 

Yes.

The information found in this study will be combined with information from research literature. We will use the information in future research about how to measure if services are providing best practice in aphasia. 

For more information, contact Associate Professor Sarah Wallace.

Email: s.wallace3@uq.edu.au