The development and adaptation of methodologies to involve people with cerebral palsy is based on the following reasons:

Cerebral Palsy (CP) is a population with posture and motor disorders, which affects children from birth. These motor disorders are often accompanied by epilepsy and by disturbances of sensation, perception, cognition, communication and/or behaviour. Their intelligence level is normally between 50%-70% of the average  population but their limitations of motor control and the lack of communicative abilities can mask this, hampering their learning possibilities and their development process and limiting their physical and social activity, even affecting their health.

Life expectancy and quality of life of children with cerebral palsy have considerably increased with their increase of communication possibilities due to Alternative and Augmentative Communication (AAC) approaches.

However, the inclusion of CP population in assistive products RTD related activities is very limited and third parties such as their family, professional and caregivers frequently provide their needs [1].

Therefore, the first part of the project has been devoted to the definition of the methodologies to identify needs, demands and expectations of CP people  to develop a new communicator based on Brain Neural Computer Interface (BNCI), and to the evaluation and analysis of the advantages and limitations of the new communicator.

Four different methodologies have been selected and adapted to the needs of users with cerebral palsy: Interviews, Context Mapping [2], Focus Groups [3], Repertory Grid Technique (RGT) [4], Affinity Diagrams [5] and Persona [6].

The outputs obtained from the application of these techniques have been insightful to decide the characteristics of the communicator to be developed and opens the door to further developments in this field.

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Figure 1. Real example of a Context Mapping contribuition by one user.

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Figure 2. Application of techniques and user profiles participating.

Users with CP found that current AAC are good enough to communicate in daily living environments. Therefore, they are expecting new possibilities to express complex messages, the transmission of emotions and its use in common social environments such as groceries and at the neighborhood.

The use of the new ABC communicator was seen by some users as a process that starts with its use at their nursing centers with the help of carers, it continues at home with family and friends, and in third place at public spaces and outdoor, more autonomously and as part of other relationships. It is a process of use in which they gain confidence and security in using the communicator which gradually will allow them to use more features and to achieve more independent living.

Besides the main communication functions, users reported that they would like to use it for accessing to the internet services (chats, social networks, multimedia, email ...) and for making calls as a mobile phone. Also noteworthy, it is their desire to use it as a support for listening to music and watch movies (some people also mentioned reading) and that involves a help for certain activities such as travelling, shopping or controlling the environment (home automation).

Participants’ expectations towards the new communicator go beyond augmentative and alternative communication. They considered it as a tool also provides socialization and access to leisure resources that can be autonomously used by themselves.

Most users shown great interest to keep on learning and improving their activities in a continuous way. Therefore, they highlight that the system should allow them to learn about their communication process through easy tutorials.

Participants would like that a new AAC allow them to expand their vocabulary through different options: dictionaries, antonyms and synonyms, predefined sentences, etc. Likewise, the system must help in the correct construction of the most common sentences in daily use. Some users have linked reading and learning: the system must translate the reading to their specific language (Bliss, SPC, etc.).

The dictionaries are considered very important. The users propose three types of dictionaries: complete/general (all the words), functional (the most frequently words employed by the user) and lexical (the words that the user knows but does not frequently employs).

Internet tools are, again, the most demanded feature. Users do not want to limit their interaction with others to the direct communication or to the people of their closed environment. They want to use the internet to contact and communicate with other people. The same argument is used to demand phone features to the communicator, in order to enable them to make calls and send messages.

Some users have demanded the possibility of have a translator, in order to allow them to stay in touch with people that speak foreign languages (e.g.: at the Boccia tournaments).

The possibilities of emotion management were  new for the participants. The possibility of a system able to recognize and help them to express their emotions produced contradictory reactions. From one side, they feel that their lack to express emotions sometimes leads to frustration and anger, and a device helping them to identify and express their feelings could be very useful. From the other hand they want to be active deciding when they want to express emotions and when not. Therefore, the users expect a new system at this respect being modular and customizable.

The main aspects, in this area in which the communicator can help, in order of importance, are the following:

  • To identify and differentiate emotions and feelings.
  • To communicate that feeling, using suitable vocabulary and tools: images, speech output, etc.
  • To control emotions through specific tools, if this emotion is interfering with an interaction or activity.