Online sharing and support among users of an MND forum

Background There are increasing opportunities for individuals with Motor Neurone Disease (MND) and their carers to seek information and share knowledge, experiences and emotions online. Although studies have examined the use of web forums within healthcare and some attention has been paid to information exchange and provision of advice, few studies have focused on the processes of sharing of information and experiences. The role of trust and empathy in mediating illness-based online sharing is also under-researched. This poster will report work in progress from a research project that is examining information posted to the MND Association online forum. The study is part of a large-scale project entitled 'A Shared Space and a Space for Sharing' which is investigating how people in extreme circumstances share information online and how acts of sharing impact on the development of trust and empathy. Objectives This project will investigate the processes (e.g., emotional, practical, relational) involved in sharing in the MND Association forum, and will establish what the potential benefits are, if any, of developing trusting and empathic relationships in online environments for those living with MND. Findings The poster will report on initial themes emerging from the analysis. Outcomes The findings will provide understanding about how trust and empathy can be facilitated in online environments. They will also highlight factors that contribute to under-sharing, poor sharing and loss of trust between individuals interacting in online spaces. This will be of interest and practical use for charitable and health organisations (including the MND Association) seeking to explore innovative ways of using, designing and facilitating digital environments to deliver and/or enhance support services. Acknowledgements Thanks to the MND Association for their support with this work. This project is part of the 'A Shared Space and a Space for Sharing', funded through the following cross-council programmes: Partnership for Conflict, Crime and Security Research (lead: Economic and Social Research Council (ESRC)), Connected Communities (lead: Arts & Humanities Research Council (AHRC)), Digital Economy (lead: Engineering and Physical Sciences Research Council (EPSRC)) in partnership with: Defence Science and Technology Laboratory (Dstl), Centre for the Protection of National Infrastructure (CPNI)