Abstract
Impaired communication due to a disabling illness can lead to reduced participation in community life. Online health communities can provide a substitute community for the purpose of social support and information sharing. This study examines communication between participants in an online community for patients and carers affected by Amyotrophic Lateral Sclerosis, a degenerative neurological disease affecting communication and mobility. The study finds community members engaged in a dynamic interchange of information and social support. The results contribute to understanding of communication and social support needs of people with high levels of disability.
Notes
ER: emergency room; MDA: Muscular Dystrophy Association; EMG/NCV: electromyography/nerve conduction velocity.