Empathy, sharing and support among users of a forum for people with MND
Creators: name: Bath, Peter A.
name: Ellis, Julie
name: Hargreaves, Sarah
name: Lovatt, Melanie
Publisher: name: F1000Research
Year: 2017

description: Background<br><br>There are increasing opportunities for people with Motor Neurone Disease (MND) to seek information and share knowledge and experiences online. Although some attention has been paid to information exchange and provision of advice on online health forums [1], few studies have focused on the process of sharing information and experiences. The role of trust and empathy in mediating illness-based online sharing is under-researched [2].<br><br>Objectives<br><br>The aim of the research is to examine how people with life-threatening and terminal illnesses share information online. The objectives are to: identify how and why people living with MND use the MND Association forum; establish what the potential benefits are of developing trusting and empathic relationships in online environments for those living with MND, and identify what challenges are associated with using online health forums.<br><br>Methods<br><br>We used a qualitative methodology comprising a sample of 135 threads from the MND Association forum and semi-structured interviews with five forum users living with MND. The data were analysed thematically using NVivo 10 software [3]. The forum posts and interviews were initially analysed separately and, as emerging themes were identified, the datasets were then analysed together to inform each other.<br><br>Results<br><br>A major finding was the value that users derive from the forum. This is manifested in two key ways: first, the forum is valued for being an empathic space where users can share and obtain emotional support from each other. The empathy that arises from shared experiences provides users with support that they are unable to access from friends and family. Secondly, users share informational support, which affords them practical advice, which health professionals cannot provide.<br><br>Discussion and conclusions<br><br>The findings provide new understanding about how trust and empathy can be facilitated in online environments. Individuals use these in the absence of support from health professionals. They gain support, friendship and hope from other forum users. These findings are important for charitable organisations seeking to use, design and facilitate digital environments to deliver and/or enhance support services and for health professionals who support people with MND.<br><br>References<br><br>[1] Sillence E. Cyberpsychology, Behavior and Social Networking 2013; 16 (6):480-485.<br>[2] Nambisan P. J Am Med Inform Assoc 2011; 18: 298-304.<br>[3] Braun, V. and Clarke, V. (2006) Qualitative Research in Psychology, 3 (2). pp. 77-101.<br><br>Acknowledgements<br><br>We thank the MND Association for their support with this work.<br><br>This research is part of a large-scale transdisciplinary project entitled ‘A Shared Space and a Space for Sharing.’ This larger project has a number of work packages each exploring sharing online in a different extreme circumstance (e.g., people experiencing serious illness, suicidal ideation, humanitarian crisis, drug addiction and seeking tissue/ organ donation). <br><br>The overarching aim is to provide a transdisciplinary understanding of the online sharing of personal information, emotion and resources in extreme circumstances.<br><br>The project  ‘A Shared Space and A Space for Sharing’ was funded through the Cross-Council EMoTICON programme, which is funded through the following cross-council programmes:


	Partnership for Conflict, Crime and Security Research (led by the Economic and Social Research Council (ESRC)),
	Connected Communities (led by the Arts &amp; Humanities Research Council (AHRC)),
	Digital Economy (led by the Engineering and Physical Sciences Research Council (EPSRC))

<br><br>in partnership with:

	Defence Science and Technology Laboratory (Dstl),
	Centre for the Protection of National Infrastructure (CPNI).

<br><br>Learn more: http://www.space4sharingstudy.org