Communication That Changes Lives: Social Support Within an Online Health Community for ALS

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.

Keywords:

• Amyotrophic Lateral Sclerosis
• Disability
• Internet Communication
• Online Communities
• Social Support

Notes

ER: emergency room; MDA: Muscular Dystrophy Association; EMG/NCV: electromyography/nerve conduction velocity.

Additional information

Notes on contributors

Susan Stewart Loane

Susan Stewart Loane (M.BA., Melbourne Business School, 1995) is a doctoral student in the Department of Marketing and Management at Macquarie University, Sydney, Australia.

Steven D'Alessandro

Steven D'Alessandro (Ph.D., University of Western Australia, 1997) is a senior lecturer in the Department of Marketing and Management at Macquarie University, Sydney, Australia. The authors acknowledge and thank Professor Dominic Rowe from the Australian School of Advanced Medicine, Macquarie University, for his generous assistance with this project. The authors also thank the editor and anonymous reviewers who provided suggestions for improving this paper.