Tamara Carpenter, Felicity Munt, MS Society of Victoria
The purpose of this project is to set up enduring online communities of people with Multiple Sclerosis (MS), their families, friends, carers and service providers (PwMS). It provides PwMS with the skills and knowledge to use the Internet and works in partnership with them to build online communities.
MS is a disease of the central nervous system that is most commonly diagnosed in young adults. The disease can make social participation difficult and raise psychosocial issues in adjusting to diagnosis, changing lifestyle and reassessing career choices. Many PwMS are low-income earners. Access to training and education is often difficult for people with MS due to mobility restrictions, extreme fatigue, cognitive changes and the psychosocial issues. The combination of restricted mobility, extreme fatigue and social isolation suggest that this group would benefit greatly from participating in online communities yet have particular difficulty getting access to the Internet and the training in how to use it.
We have developed specific training packages that address general disability issues as well as access, equity and adult learning principles. The packages look at how to participate in online communities and how to moderate and manage them. We have also developed a Train The Trainer course targeted at volunteers who will be working one-to-one with PwMS in their own homes. Training is offered on-site at Internet-connected public access computers, in peoples homes, and in community facilities.
These communities build on existing networks that have developed in other forums such as specialist groups, information sessions and rehabilitation programs. Online communities offer: