Brain-computer interfaces for individuals with quadriplegic cerebral palsy: A user-centred, exploratory approach

Abstract

Cerebral palsy (CP) is the most common form of childhood disability, affecting approximately 2-3 out of 1000 births per year. CP is an umbrella term describing a group of movement and posture disorders, caused by damage to the foetal or infant developing brain. Due to the severity of their physical impairment, it is difficult to gain access to technology that can enable them to communicate. Brain-computer interface (BCI) technology has been proposed as a new access method for individuals who have little to no motor control. This type of technology is unique as it does not require any physical capability on behalf of the user. Instead it functions through direct communication via neural activity produced by the brain with a computer, enabling even individuals with no muscular control with a means of communication and interaction. Although the technological components of BCIs have been researched heavily for over 50 years, they have not transitioned from research labs to the real world. The focus of the research was to apply an exploratory, user-centred approach to understand the contextual and usability factors that may influence the potential of BCIs for individuals with severe CP and those who care for them. This thesis that incorporates publications, includes the results of three main studies. The first study was a focus group that aimed to gain an understanding of the context of assistive technology (AT) use in New Zealand, through the experiences and perspectives of different stakeholders in the technology adoption process. Initially this study was inclusive of questions regarding user requirements for a BCI to be used as AT. However, participants noted that they did not hold adequate knowledge of the technology and wished for more experience before they felt comfortable addressing such questions. For this reason the next phase delved into the testing and evaluation of an existing commercial BCI by individuals with CP. A final study was completed to gain a more detailed understanding of the perceptions of special education staff and caregivers who took part in the trials, both observing and acting as proxies to our participants with CP. Participants were interviewed following the user testing process and to gain information on their experiences with the different components of the BCI system. Our results indicated that this commercial BCI was not suitable for independent use outside clinical/laboratory settings. Prior to use within an ecological environment, the hardware needs to be configurable, comfortable and accommodate physical support needs. The training approach needs to be less cognitively demanding, more motivating and support personalised mental tasks. For BCIs to transition into the real world, there should be adequate technological support, improved reliability, and a systemic assessment of how the technology will fit into the lives of end users. Participants emphasised the on-going need to involve users and individuals who support them, to create a system that truly meets the needs of the users.