Dusted But Connected: A Case Study of Australian Online Community for People Affected by Asbestos-Related Disease

Abstract

The impact of an asbestos-related diagnosis in Australia is multi-faceted and complex. Sufferers and carers face a range of life-limiting physical symptoms as well as the additional anxiety frequently associated with pursuing a claim for legal compensation. The result is that those affected by asbestos-related disease, their carers and families, often experience social isolation and a lack of social support. While traditional, face-to-face support groups can provide geographically proximate members with a valuable opportunity for interaction and support, they are not readily accessible outside major population centres and for people with acute symptoms of mesothelioma where all forms of social interaction, including travelling to and attending a support group meeting is problematic. Digital technologies and in particular online communities have the capacity to provide social support and thereby reduce the social isolation experienced by people affected, both directly and indirectly, by an asbestos-related diagnosis. Online communities have the potential to connect members of this community to experientially similar others. They have a particularly important role to play in Australia, a geographically large but relatively sparsely populated country characterised by a mix of urban, regional, rural and remote communities. This paper presents details and findings from a members’ evaluation of a pilot project that involved the creation of the Dusted Community, a peer- to- peer online community for men and women affected by an asbestos-related diagnosis. It was hoped that the Dusted Community, by addressing social support directly, would provide substantial benefits both for individuals with an asbestos diagnosis and for their carers. The members of the Dusted Community expressed strong support for an online community and emphasised the unique nature and challenges associated with an asbestos-related disease and the importance of being able to share their own stories