This is the first article of a three-part series on AAC and aphasia created from an interview with the co-authors of the AAC vocabulary Communication Journey: Aphasia. Special thanks to Lois Turner, Anne MacCallum, and Sarah Douglas for their kindness and dedication in helping individuals with aphasia find their voice.
Augmentative and alternative communication (AAC) is a set of tools and strategies used to solve everyday communication challenges. It is an effective option for those with aphasia, a disorder caused by damage to the parts of the brain where language is stored which may affect the ability to comprehend language, express oneself, read, spell, or write. AAC can help them supplement existing speech or replace speech that is not functional.
An evidence-based AAC vocabulary like Communication Journey: Aphasia addresses the unique needs of individuals with acquired language impairment while in recovery or for long-term use. Included are pages that facilitate supported conversation techniques, self-advocacy, directing care, and repair of communication breakdowns. This diagnosis-specific vocabulary can easily be adapted for use by people with different types of aphasia and a range of cognitive levels and degrees of severity.
Communication Journey: Aphasia was created in 2013-2014 by Lois Turner, SLP and Manager at CAYA, Anne MacCallum, SLP and AAC Coordinator at the Assistive Technology Service at GF Strong Rehabilitation Centre, and Sarah Douglas, SLPA and TouchChat® Certified Trainer at CAYA in consultation with the speech-language pathologists at GF Strong who worked exclusively with people with aphasia and brain injuries. All the clinical participants worked at CAYA (Communication Assistance for Youth and Adults) and the GF Strong Rehabilitation Centre in Vancouver, BC, Canada. The framework of the file was inspired by the Life Participation Approach to Aphasia from the Aphasia Institute in Toronto, Canada.
The group wanted to create an aphasia friendly template with specific highly used choices, predictable navigation, and easily customized buttons so that someone with very severe aphasia could use it and experience its benefits. Together, the SLPs from CAYA and GF Strong held focus groups and brainstormed individual messages, pages, and information that people with aphasia and traumatic brain injury frequently wish to discuss including:
They took that information, organized it into page sets within a simple grid structure, and started to create vocabulary pages in PRC-Saltillo’s TouchChat app to trial with patients.
During the pilot project phase in 2012, SLPs customized the vocabulary file to begin training each client. Initially, some worked with a four-button grid, while others used an eight-or-12-button layout. The number of pages sometimes increased with client growth. SLPs provided feedback to the authors over a multi-year period. Revisions addressed additional communication and accessibility needs; they didn’t want to inadvertently miss a critical piece of communication. The group finally decided to focus on the four-by-three button layout as it was deemed easier to delete unwanted buttons rather than creating new ones.
The collaborative team announced their aphasia-specific vocabulary development at the 2014 International Society for Augmentative and Alternative Communication (ISAAC) Conference in Portugal. Their relationship with Saltillo (now PRC-Saltillo) began soon after. Communication Journey: Aphasia would officially become a vocabulary offering available within TouchChat so that more individuals could find their voice.
Communication Journey: Aphasia allows for symbols, personal photographs, visual scenes, videos, or words to be used on the message, topic, and script pages. The customizable pages include options for pain and emotion scales, maps, templates for personal information and life stories, and schedules. Specialized features include variable “rate of speech” and “pause between words”. Grid size and vocabulary are flexible to reflect and support the life experiences of the person with aphasia.
It's important to note that this AAC file contains starting-point vocabulary commonly required by adults with aphasia. It MUST be customized for each person’s unique history before use. To work effectively, the file must reflect the person’s life, experiences, interest areas, and abilities. Family members, friends, social workers, SLPs, and other support team members are imperative to this process.
“It's always going to need a lot of customization, but we wanted to make it as easy to customize as possible and make it as transparent as possible for the speech pathologist,” said MacCallum.
Customizing a file could mean reducing the number of buttons and pages, or it could mean creating a wider range of pages to support comprehension and independence. Consider the needs, interests, and lifestyle of the person as you customize. Here are a few examples.
Douglas, who did most of the technical button and page set programming for Communication Journey: Aphasia development, recalled the importance of the vocabulary to Kathy, a client living on her own with some support. “She really struggled with communicating time and appointment information,” said Douglas. “The structure of the pages, customized statements, and the visual clock helped her manage medical appointments on her own. The highlight for her was being able to do those things more independently with customized AAC.”
Watch Kathy’s video scheduling a ride over the phone with her customized Communication Journey: Aphasia page sets on her TouchChat app.
Communication Journey: Aphasia was created to be as easy as possible for individuals with aphasia to use. It has common vocabulary and the ability to be modified, added, or deleted as needed. MacCallum suggested, “Start with the basics for most individuals; then remove or simplify for those who can’t manage that size well. The original file comes with 12 buttons on the home page. Customize or remove buttons as needed.”
Below are images of the home pages in English, Spanish, and French.
In addition to the initial customization, ongoing vocabulary updates are key. As time progresses, environments change, and vocabulary needs to keep up to help in different situations such as for medical needs, travel plans, current events, and more. A member of the AAC team, such as a caregiver, provides this additional programming to give them access to additional words. Consider adding vocabulary that creates opportunities for participation and connection. Provide them with more vocabulary as you follow their lead.
“Ongoing customization by either the client or caregiver is going to need to be provided so that the client has continual access to vocabulary,” said MacCallum. “If they don't have the vocabulary to support a new area of their life such as meeting new people or trying new things, they aren’t going to get very far in participating in that part of their life.”
Learn more about the standard pages available, how to customize the grid, and sample conversations on our Communication Journey: Aphasia playlist.
AAC solutions range from apps on tablets to devices that are built as durable medical equipment and often funded by insurance. Communication Journey: Aphasia is currently available in English, Spanish, and Canadian French through the TouchChat app on your iOS device or on a fundable NovaChat® or Via® communication device. As part of the Bruce Baker AAC Globalization Initiative, this unique vocabulary will be available in Mandarin later this year.
Connect with your local PRC-Saltillo consultant to explore your options to achieve your highest level of communication regardless of disability, literacy level, or motor skills.
Learn more about the development of Communication Journey: Aphasia and how it’s designed to help individuals experience meaningful communication and independence.