For today’s HFA news post, I would like to share a summary of my thesis with you. It’s about a relatively new type of assistive device: a brain-computer interface (BCI). Maybe some of you have already seen something about this in the HFA Facebook group, or even joined the study! Let me explain what it’s all about.
Bridging the gap between ataxia and BCIs
While ataxia is a broad term and the condition progresses differently for everyone, there are situations where people with ataxia may not be able to perform very important tasks anymore. A brain-computer interface (BCI) might serve as an alternative way of control or communication for people with ataxia. A BCI relies directly on brain activity and can be used to control a device like a computer or an electrical wheelchair. Research has already been done with other patient groups (e.g. ALS, spinal cord injury) to investigate their attitude towards BCIs. However, up and until now it was still unknown what people with ataxia think about the potential use of a BCI as an assistive device.
We explored what disabilities are associated with different forms of ataxia, how it impacts ones daily life, and how this condition progresses over time. Furthermore, we investigated what people with ataxia expect from a BCI system and which applications they would like to use it for. We also aimed to shed some light on the potential positive and negative implications of BCI use.
A suitable BCI for people with ataxia
This study showed that expression of ataxia-related symptoms and progression over time is different for everyone, but difficulties with coordination and speech are typical problems. Vision and hearing-related difficulties are less prevalent but they can still pose a problem for control of common-used BCIs. Implementation of a tactile user interface or speech-to-text functionality are potential solutions to make BCIs accessible for people with ataxia that are dealing with sensory issues. People with progressive ataxia have shown interested in being supported by BCI technology, especially as a tool for communication, control of personal computers, and mobility support. A BCI with an electrode implant seems to be a suitable option, especially considering the importance of good BCI performance as indicated by people with ataxia. However, a BCI that works with a dry-electrode cap is a more acceptable alternative that does not require an operation. For people of older age (65+), a BCI that works with an MRI scanner at the hospital may also be a suitable option.
Things to consider
If people are to use a BCI at home, it is important that the BCI does not become a burden for caregivers or relatives. A BCI is a device that requires a form of shared control (with the smart algorithm): this did not worry people with ataxia at all, and most perceived a BCI like any other technological device. As a last point: having to accept a new aid is not always easy. Engaging people with ataxia in BCI research early on will give some time to get accustomed to the thought of potentially needing a BCI in the future. It also provides some perspective on what (future) options are out there in terms of assistive technology.
This study has been the first step to investigate the attitude of people with ataxia towards BCIs. The results show that people with ataxia are interested in using a BCI in the future but also that people with ataxia may have certain disabilities that are not compatible with common-used BCIs. Researchers should use this information in order to create a satisfactory and suitable assistive device that can be used by this target group. Future research should aim to involve people with ataxia in user research with actual BCIs. This way, people with ataxia can indicate how they experience using a BCI and what usability issues they encounter.
Fifty-two people with ataxia completed a survey indicating their BCI interest and design preferences. Seven participants were invited for a follow-up interview to explore their experience with ataxia and attitude towards BCI technology more in-depth. An additional five interviews will be conducted with people with Friedreich’s ataxia before submitting the article to a journal for publication.