AAC users’ voices in research: How people who use AAC are shaping research 

The voices and ideas of people with cerebral palsy who use augmentative and alternative communication (AAC) are so important to doing research that is more relevant, respectful, and useful. AAC users may use picture books, communication devices, text‑to‑speech apps, or signs to communicate. But researchers often ask family members or support workers to speak for AAC users, and AAC users are left out of research. This does not need to happen when there are ways to obtain ideas from AAC users themselves. Researchers say they are not always confident to communicate with AAC users, and tahey don’t want to get it wrong.  We wanted to change this. 

Our project brought AAC users and researchers together to create a guide (a framework) for making research more accessible, respectful, and inclusive. We wanted to help researchers include AAC users in research - both as research partners and as research participants.  

Our partnership was built on lived experience 

The project was part of CP‑Achieve, a research centre focused on young people and adults with cerebral palsy. An advisory group of AAC users called One Group Our Voice met often with researchers to shape the project at every stage: 

• Sharing personal experiences of research  
• Advocating about communicating with AAC users 
• Developing and testing accessible research methods, and 
• Working together to design a toolkit for other researchers. 

Power and accessibility 

An important part of our framework for involving AAC users in research is knowing about power. AAC users often experience ableism and paternalism, where people assume AAC users cannot understand, decide, or contribute, and therefore exclude them.  

The framework identifies accessibility as the key to balancing power. AAC users can be involved in research when researchers slow down, listen, and adapt. The framework guides researchers to: 

1. Work together with AAC users - to find out about their communication preferences and to develop research materials together. 

2. Focus on developing skills and knowledge about AAC users - to understand AAC, being respectful in communicating with AAC (this is called AAC etiquette), special roles of communication supporters, fatigue, differences in reading and writing abilities, the differences in experiences of individual AAC users, and how to adapt research materials to be accessible and acceptable. 

3. Make sure there is enough time. AAC communication takes longer. Preparing for meetings takes longer. Researchers must take time to plan ahead, develop accessible research materials, and ensure AAC users have the time they need to be fully included. 

Five areas where accessibility matters most for including AAC users in research 

Recruitment: Invitations must clearly state that AAC users are welcome and supported to be part of the research. 

Communication supporters: Their role is critical for supporting communication, but they should not overshadow the AAC user. 

Adapted research methods: This includes sending questions ahead, offering multiple sessions, using video to capture gestures, and modifying questions and scales in surveys and interviews. 

Ethics: Ethics committees must avoid assuming AAC users are “too vulnerable” to participate. 

Consent: Adapted methods may be needed to get consent from AAC users to be involved in research. 

Why our work matters 

We want more AAC users to be included in research, not just as participants, but as partners in research. And we aim to support researchers to include AAC users directly, not only through their family and communication supporters. Inclusion is a human right and involving AAC users leads to research that truly reflects their lives and what is important to them. Our framework shows what respectful, collaborative research can look like, and how powerful it is when AAC users are part of a project. 

More information (set this up as we normally would) 

Read: Including people who use augmentative and alternative communication in qualitative research 

Download the Toolkit we collaboratively developed with practical strategies for using our framework.