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

IntroductionAustralia faces considerable challenges in meeting both the current and future health needs of its citizens notwithstanding that Australia's health care system continues to perform well when judged by the international standards of average life expectancy and rate of infant mortality (Armstrong, Gillespie, Leeder, Rubin and Russell, 2007). Research suggests that Australia's challenges include both an ageing population and "the growing burden of chronic illness" (Armstrong et al., 2007, p. 485). To this scenario must also be added the significant costs associated with advances in medical technology together with problems of health workforce supply and distribution (Armstrong et al., 2007). In addition there is considerable evidence of widespread and persistent inequality in health outcomes and access to health services (Turrell, Stanley, de Looper and Oldenburg, 2007). Many outer metropolitan, rural and remote communities face significant health workforce shortages, including general practitioners, nurses and some allied health professionals (Joyce, McNeil and Stoelwinder, 2006). According to Dixon and Welch, "The reality of living in rural and remote areas of Australia is that there are fewer health-care services" (2000, p. 257).Despite the inequitable access to health care and other related challenges, digital technologies have the potential to provide a viable solution (Halvorson, 2012) to some of the issues outlined above. Telehealth (TH), for example, which "involves the use of information and communications technology to deliver health services, expertise and information over distance, geographic, time, social and cultural barriers" (Elliot et al., 2012) has been successfully employed in many countries since the 1990s. Online or "virtual" communities provide a further example of the potential of digital technologies to provide support to communities experiencing significant health-related challenges. According to Eysenbach, Powell, Englesakis, Rizo and Stern (2004, p. 1126) "[O]ne of the most promising aspects of the rise of e-health is the widespread availability of electronic peer-to-peer community venues, where people with common interests gather "virtually" to share experiences, ask questions, or provide emotional support and self-help. Virtual communities can be seen as mental health and social support interventions." Virtual communities that enable peer-to-peer support amongst members are commonly referred to as electronic or online support groups (Eysenbach et al., 2004).A diagnosis of an asbestos-related disease is a devastating and life-changing experience, for the person diagnosed, for their carers, and for their families. Asbestos causes diseases such as asbestosis, pleural thickening, pleural plaques, lung cancer, and mesothelioma (Johnston and McIvor, 2000), with mesothelioma being a particularly debilitating disease whose symptoms are frequently exacerbated due to late diagnosis (Tomasetti, Amati, Santarelli, Alleva, and Neuzil, 2009). The disease is also often confused with lung cancer with many mesothelioma patients reported to be receiving treatment for lung cancer (Arber and Spencer, 2013) despite the two diseases being inherently different (Moore et al., 2010). Those diagnosed generally face a rapid decline in health followed by death (Weder, 2010). In addition to a range of life-limiting physical symptoms including coughing, pain and breathlessness leading to gradual and severe disablement (Clayson, 2007; Hughes, 2006), it is not uncommon for sufferers to experience additional anxiety-associated issues related to pursuing a claim for legal compensation.The severe impacts from asbestos-related disease are a major concern since Australia has the second-highest rate of mesothelioma deaths in the world, behind only the United Kingdom. There have been more than 10,000 deaths from the disease since the early 1980s (Asbestos.com, n.d.). It is estimated that there will be more 3,000 asbestos-related disease fatalities annually. …