Upcoming project: Co-designing audio support messages with and for people with ataxia: a telephone version of the “I’m not drunk” ID card
Principal Investigators: Dr Maria Cairney and Prof Anja Lowit, University of Strathclyde (UK)
Scientific summary:
People with ataxia often experience communication challenges as a result of speech difficulties. Their speech can sound slurred and uncoordinated, and their voice may appear harsh or monotonous and can be too quiet or too loud. This can make it harder for people with ataxia to be understood. To add to this, people may make certain assumptions about a person with ataxia as a result of how their voice and speech sound, leading to stigma and misunderstanding, which is especially prominent in telephone conversations where visual cues are not present.
One such misunderstanding is the belief that people with ataxia appear as though they are drunk due to their slurred speech. This has been highlighted in a previous study by Dr Cairney and Prof Lowit at the University of Strathclyde, looking at perceptions of people with ataxia during telephone conversations with customer service providers. People with ataxia who were interviewed in this study reported that customer service providers could sometimes become passive aggressive or even hang up on them before they could explain the differences in their speech. Such misunderstandings of speech in people with ataxia can lead to family members having to support them with telephone calls, thereby reducing their independence and agency.
Following the success of the Ataxia UK “I’m not drunk” cards and similar initiatives disseminated through the Portuguese government, the UK Headway brain injury charity and in a number of one-off NHS projects, this study aims to be the first to explore facilitators and barriers to using audio self-advocacy messages as part of telephone conversations. Firstly, people with ataxia will complete a survey about the idea and what would be important to consider when designing the audio messages. Together with six people with ataxia (aged 20-70), the researchers will then co-develop a bank of messages. Then, the researchers will test their effectiveness and acceptability in the context of real-life telephone conversations including 20 people with ataxia, which will take place over a period of three months. With the 20 ‘testers’, one or two focus groups will be conducted to investigate their experience of using the audio messages.
Lay summary:
People with ataxia may experience changes in their speech that make it harder to understand. Sometimes they are mistaken for being drunk because of the way the condition affects their speech and movements. Ataxia UK provides physical cards, called “I’m not drunk”, which explain ataxia. These cards have been helping people with ataxia ask for what they need during in-person conversations. In a recent study, people with ataxia shared that they can be misunderstood and experience stigma during phone conversations, which can lead to frustration, wasted time, and upset. Some said that if they explain ataxia and ask for more time to speak, they have a better experience.
In this project, led by Dr Cairney and Prof Lowit at the University of Strathclyde, the researchers aim to create audio messages that people with ataxia can use during phone conversations to raise awareness of their needs and condition to prevent these negative experiences from happening. This is needed because many services are removing physical branches and are only offering remote customer support.
In Stage 1 people with ataxia will complete a survey about the idea and what would be important to consider when designing it. Six people (aged 20-70) will be invited to Stage 2 as co-designers, to refine the suggestions from the survey and to discuss their priorities for the messages. Based on the combined results from the survey and the co-designers, several messages will be recorded. In Stage 3 up to 20 people with ataxia will be invited to test the messages in phone calls with service providers over 3 months and complete questionnaires about their experiences. In Stage 4 the testers will be invited to discuss their experiences in one or two groups and suggest further improvements.
The messages and the results from the project will be shared with people with ataxia through the Ataxia UK charity.
This project is due to start on October 1st 2025.
