Iterative design to improve aphasic communication

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An important part of our personal life is being able to share with others different stories. In a regular family gathering, when meeting friends, during coffee break at work, people share all kinds of stories and events that have happened to them or to others. In other words storytelling enables people to share and reflect on their own or other people’s life experience. When a person, due to injury or disease, looses or becomes limited in his/her ability to use language (for example because of aphasia) or has difficulties with recalling past events (for example because of Alzheimer disease) she or he also looses the ability to share stories, which can in turn lead to increased social isolation. A variety of assistive tools has been developed in order to improve the communication abilities of disabled persons. So far, most of the existing systems focus on supporting elementary communication needs such as the ability to tell very simple and short stories (words or sentences). Even creating such short stories may already require a lot of effort from a disabled person and/or caretaker. In this project we aim at developing a storytelling supporting system for individuals with (expressive) aphasia or other related communication disorder. The main research question that inspires this thesis is whether or not technology can help to break (reduce) the social isolation of people with aphasia and other kinds of communication disorder by supporting story collecting, building and expressing. At the first phase of the project we interviewed persons with aphasia, their partners and therapists. Our objective was to identify what technologies they use and what they see as barriers to technology adoption. Later on, several devices were built for capturing daily stories. Since most aphasics have right-sided paralysis attention was given on the ergonomics and form factor of the capturing devices. In the later stage for sharing stories email was chosen. However, current email programs are not suitable for aphasics. Therefore, to understand the suitability of email for aphasics, an email template was redesigned. This email template came along with an Augmentative and Alternative Communication (AAC) software. The application was tested with aphasics and therapists. However, we also observed that the AAC software requires an expensive license which would prevent widespread distribution. Next to our initial designs we also investigated how people with aphasia communicate over email. Aphasia Union Netherlands (AVN) has a web-based social networking program designed to enhance communication between aphasics and therapists. We investigated how aphasics utilize the program. Therefore we extracted server logs and also collected subjective responses through two questionnaires. We found several issues such as poor navigation within the interface and privacy issues that hinder long-term adoption of this tool. This phase also helped us to gain new design insights for our own email client: Amail. In the next design phase we designed a new email client for aphasics. The new email client simplifies the complexity of traditional email clients such as Outlook, Hotmail etc. Moreover, our client provides twofold language support to compose email messages. The client provides opportunity to select words from incoming email and also from a mini dictionary designed with the help of the speech therapist. Moreover, we have designed three word selection techniques to support people with aphasia who also suffer from right sided paralysis. Our usability evaluation results indicate that Amail is suitable for some aphasics. Moreover, aphasics find the word selection techniques and the language support very useful. As a final evaluation of Amail we conducted a 3-month long field trial with eight aphasic individuals. Subjective data (questionnaires,interviews, and diaries) and objective data (usage logs) were collected to gain understanding of the usage patterns. Our findings suggest that aphasics were able to independently teach themselves the tool for emailing. The usage patterns, especially the frequency and length of the composed email messages, indicate that, over time, aphasics were able to conduct adequate e-mail communication. Aphasics email partners also showed increased confidence that their aphasic email partners were improving gradually. Last but not least, use of Amail has positively influenced the social contacts of aphasia participants.