"I Prefer Contact This Close": Perceptions of AAC by People with Motor Neurone Disease and their Communication Partners

Abstract

In this paper are the findings of a 3-year research project into communication between 15 people with Motor Neurone Disease (MND) and their closest communication partners, as the disease progressed. Data were collected through video recordings, narratives, and field notes. The purpose of the communication and the use of augmentative and alternative communication (AAC) according to the perceptions of people with MND and their partners were examined. For the people in this study, it appeared that AAC was less successful than anticipated. The participants gave a number of reasons, which were interpreted by the researcher to include (a) the need for social closeness, which may not be possible when using a device; and (b) the complexity of learning how to use a high technology device combined with inadequate training. Both theoretical and practical issues are raised for professionals who work with and provide services to families with MND.

• Motor neurone disease
• Augmentative and alternative communication
• Communication partners
• Progressive neurological disease
• Qualitative research
• User perspective