Online community aims to end social isolation for asbestos disease sufferers

An innovative research project is investigating the social and psychological impacts of asbestos disease and how the development of an interactive online community could help reduce the impacts for the sufferers, their families and their carers.

The project is being led by Southern Cross University’s Regional Initiative for Social Innovation and Research (RISIR), with funding from the Asbestos Innovation Fund (AIF). Project partner is the vTeam, which specialises in the creation of online virtual communities.

The project has recently been extended to include a special focus on women affected by an asbestos -related diagnosis.

Associate Professor Rick van der Zwan, who is leading the project, said approximately 3500 people died in Australia from asbestos related disease each year. An estimated 40,000 people will eventually die.

“The medical effects of this disease are well researched, but little is known about the social, psychological and economic implications for those diagnosed, their carers and their families,” Professor van der Zwan said.

“Exposure to asbestos can result in a range of debilitating diseases, all of which can leave people physically and socially isolated.”

Professor van der Zwan said the researchers, who are working closely with the Asbestos Disease Foundation Australia would be using surveys, in-depth interviews and involvement in a new ‘online community’ to provide those people affected by an asbestos-related disease with a space to communicate, share and interact.

The online community would also provide a mechanism for collaboration amongst researchers and for ongoing education.

“An important part of our research is to show that emerging technology has the potential to reduce the social impact of an asbestos – related disease,” Professor van der Zwan said.

“If you are tied to an oxygen cylinder because of a disease you picked up in an industrial environment, it forces you out of your normal social networks; it forces you out of the workforce. What we are looking at is, if you like, a social prosthesis.”

Mr Barry Robson, from the Asbestos Disease Foundation Australia, welcomed the project which could also have huge benefits for carers.

He said they had members throughout Australia, many living in rural communities with little access to support services, and this project would provide an innovative way of connecting people in a safe environment.

“People have different reactions when they are diagnosed. If they can talk to someone who is already undergoing treatment or caring for someone who is that could be a big help,” he said.

Another benefit would be educating people about the continued risks of exposure to asbestos.

“When I first got involved in 1995 the industrial deaths were going to peak in 2015, now that’s pushed right out. The number of people dying of industrial exposure is slowing down, now we have to get across to people the risk of home renovation,” Mr Robson said.

Les Hornery, from the vTeam, said the online community would be as close as possible to a real life experience, despite the fact that most of the members would never meet.

“This is not a self-centric solution, this is about the team. We have taken the emphasis away from the individual. We think this journey will be very exciting, families can get involved. If the content on the site is compelling enough for people to get involved, they will find a way.”

Anyone who is interested in being part of the online community can contact the research team via Desiree Kozlowski at desiree.kozlowski@scu.edu.au or 02 6659 3655.

Photo: Associate Professor Rick van der Zwan.