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Bachelor – Mediedesign NTNU Gjøvik

Min bachelor i mediedesign ved NTNU Gjøvik.

Warp and Weft: Weaving

Warp and Weft: Weaving the Discussion Threads of an Online Community Lora Arduser University of Cincinatti, Ohio Lora.arduser@uc.edu Dept. of English & Comp. Lit. P.P Box 210069 University of Cincinnati, OH 45202 Abstract The Pew Internet & American Life Project reports that 86% of Internet users living with a disability or chronic illness have looked for health information online (Fox, 2007). And while so-called e-patients often start this search for information, many find themselves led to commnities that provide this and more, such as Tu Diabetes, an online social network site. This pause in what can seem like an endless search for answers may be one that health professionals can gain insight from. Such extended pauses may give insightinto the values of this particular community. This article provides the results and analysis of a study using ethnographic methods and rhetorical analysis to examine the texts posted by members of the social networking site Tu Diabetes in order to discern the values held by this community. Introduction The Pew Internet & American Life Project reports that 86% of Internet users living with disability or chronic illness have looked online for information compared with 79% of Internet users with no chronic conditions (Fox, 2007). Those with chronic conditions are more likely than other e-patients (Internet users who havelooked online for health information) to report that their online searches affected treatment decisions, their interactions with their doctors, their ability to cope with their condition, and their dieting and fitness regimen (Fox, 2008). And while so-called e-patients often start this online search for information, many find themselves led to communities such as Tu Diabetes, an online «community of people touched by diabetes,» for much more. A short walk through the profiles of some of the more that 16,000 Keywords • Tu Diabetes • Diabetes 24 MARLENE ANGELICA SJONSTI-BJØRNSEN BACHELOR MEDIEDESIGN NTNU I GJØVIK

(1) As of September 2010 this number was over 16,000. (2) Continuous glucose monitoring. 16 Journal of Technical Writing and Communication Vol. 45 No. 1 2015 (1) members of Tu Diabetes shows a recurring pattern in the answer to the questions «How did you find out about us? What were you searching for?» While many of the newest members mentioned a specific search for the organization because of a segment on the television program The View, other members indicated that they were looking for general information on the disease. Just a few such answers include: occlusion, searching for Thiamine and Diabetes, and just surfing the web for issues of diabetes, googled cgm(2). This pause raises a question: If the people were searching for information about the disease, what makes them stop long enough to become and remain a member of this community? From the answers in members’ profiles about what they expect from Tu Diabetes, there seems to be a shift in what people expect from what they were initially searching for when they came across the site; along with information, members of Tu Diabetes expect what several members describe as «fellowship.» While such extended pauses may indicate members trust the site as an information source and a support system, more interestingly these pause scan give insight into the values of this particular community. This article provides the results and analysis of a study using ethnographic methods to examine the texts posted by members of Tu Diabetes and fantasy theme analysis to analyze these texts in order to discern the values held by this community. After placing the role of community, and online community, in the context of current diabetes care models, the article describes the Tu Diabetes site and membership and discusses four discussion threads that appeared on the site during the 2-week study period: March 16 th to March 30, 2009. In studying the values of a group not «activated» by the healthcare community but by patients themselves, I hope to provide a better understanding of the Tu Diabetes community and other diabetes-related online sites outside of the context of the healthcare community. With over 24 million Americans living with diabetes and the estimated cost of treatment topping $174 billion (Centers for Disease Control and Prevention, 2007), this understanding could play parole in the decision-making process of health communicators as they consider how to reach out to populations living with diabetes. Researching In Online Social networking Health Spaces Early work into online communities focused on various issues. Sherry Turkle’s Life on the Screen (1995), for example, examined the way people interacted in muds and role-playing games on the Arduser, Lora Warp and Weft: Weaving the Discussion Threads of an Online Community Internet and in online communities. Rheingold (1993) looked at the cultural and political implications of virtual communities; other researchers (Baym, 1997) have used ethnographic methods in the analysis of the activities of an online soap opera community. More recently researchers have focused on the online versus offline connection (Orgad, 2005), immersion into communities that might be more difficult to access offline (Sanders, 2005) and a continued use of ethnographic methods in an ever-expanding number of «field sites» (see, for example, McCabe, 2009; Ruhleder, 2000). Much of the research that focuses specifically on health-related online communities has focused on defining how people use these sites of interaction, drawing a distinction between social and informational uses. Ramos, Rai-Chaudhuri, and Neill’s study (2004) of two online discussion lists for patients with chronic myelogenous leukemia concludes that members of these groups used the sites for emotional support, treatment discussions, and advocacy. Finn (1999) found that people with disabilities use online support groups for socio-emotional and task-oriented helping mechanisms, and Buis (2007) states that data indicate that there are significant differences in the frequency of emotional and informational support across online health-related communities. In diabetes communication research specifically, Zrebiec (2005) found that while the Joslin Diabetes Center’s Internet discussion boards were developed to provide emotional support, people used the boards for information as well. There is also growing interest in peer-to-peer social networking sites within the medical community. A 2002 article in the British Medical Journal (Ferguson, 2002) put out a call for attention to the quality of online patient networks. Eysenbach, Powell, Englesakis, Rizo, and Stern (2004, p. 1166) note that: No robust evidence exists of consumer led peer to peer communities. Given the abundance of unmoderated peer to peer groups on the internet, research is required to evaluate under which conditions and for whom electronic support groups are effective and how effectiveness in delivering social support electronically can be maximised. This «top-down» approach from the medical community foregrounds the importance of professional resources in acquiring disease knowledge (Burrows, Loader, Pleace, Nettleton, & Muncer, 2000), however, and works against the basic tenants of social network sites. 17 THE JOURNAL OF TECHNICAL WRITING AND COMMUNICATION TIDSSKRIFT 25

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