Dimensions of information exchange in an online breast cancer support group
Article first published online: 18 NOV 2010
Copyright © 2009 American Society for Information Science and Technology
Proceedings of the American Society for Information Science and Technology
Volume 46, Issue 1, pages 1–5, 2009
How to Cite
Rubenstein, E. (2009), Dimensions of information exchange in an online breast cancer support group. Proc. Am. Soc. Info. Sci. Tech., 46: 1–5. doi: 10.1002/meet.2009.1450460323
- Issue published online: 18 NOV 2010
- Article first published online: 18 NOV 2010
Within the last ten years, online health communities have created new options for people seeking information about health issues and illness. While research has shown that having supportive social networks impacts health and coping outcomes in positive ways (Brashers, Goldsmith, and Hsieh, 2002; Brashers, Neidig, & Goldsmith, 2004), few studies have examined how or why online support group networks facilitate the process of managing illness. Studies of online breast cancer support groups have reported positive emotional outcomes for participants, primarily citing the emotional support and exchanges of information that women engage with through these communities (Gustafson, et al., 2001; Høybe, Johansen & Tjørnhøj-Thomsen, 2005; Shaw, et al., 2006). These studies have also discussed reduced depression, less anxiety, and improved social interactions; however, none have analyzed these support groups to the extent of obtaining a full, multi-faceted understanding of the factors that contribute to the success of these groups. The goal of this pilot study was to begin to gain a deeper understanding of the ways that participation in an online breast cancer support group functions to provide information and social support, and whether these interactions influence medical decisions and coping skills.
Two research questions guiding this study were:
- 1What kinds of information and social support exchanges occur within an online breast cancer support group?
- 2Does participation in an online support group influence medical decisions and coping ability, and, if so, how?
This pilot study examined two months of the archives of an online breast cancer support group, looking for common themes that emerged from the material. Analysis of the postings consisted of open and axial coding (Corbin & Strauss, 2008; Strauss, 1987). Postings were first coded as medical or non-medical based on the main content of each message, then further coded into sub-categories related to content as well as format. Subsequent examination sought to understand what kinds of conversations and processes were occurring through these interactions.
Preliminary Findings and Discussion
Postings in this asynchronous, online breast cancer support group originate from multiple countries throughout the world. Although the majority of participation is from North America, there are contributors from other, primarily English-speaking, countries, including the U.K., Australia, and South Africa. An analysis of the archives revealed that much more occurs within this context than simple information exchange. Of the 1737 messages posted within a two-month period, 62% were health related, while 48% consisted of more general interchanges. Health-related postings included information about procedures, medications, side effects, foods and vitamins, but also more general discussions about other health issues, personal situations and concerns about other participants. General, non-health-related postings comprised information about family and friends, discussions of social events, business pertinent to the administration of the online group, and birthday announcements. While the subject matter of these two broad categories differed, the postings in both occurred primarily in four formats: 1) informational questions and answers; 2) personal narratives; 3) discussions about, and links to, news stories; and 4) expressions of emotional support. Most striking within this group were the levels of caring for each other that participants displayed, regardless of whether or not they were specifically discussing breast cancer health issues.
Discussion in the archives also exhibited various modalities of interaction, suggesting a framework of dual socialization into the worlds of both breast cancer and online group participation. Similar to processes that occur in communities of practice (Lave & Wenger, 1991; Wenger, 1998), participants enter as novices who learn the norms of the group's online communication, as well as acquire information and social support related to breast cancer. Current and former patients provide guidance and knowledge that helps newcomers to understand new terminology and treatments as well as facilitate coping ability. Through this process, newcomers may ultimately become mentors who then help incoming novices navigate through these experiences. As participants become more literate in the realms of breast cancer and online social support, they acquire new strengths and tools that enhance their ability to manage both their illness and online experiences. Furthermore, group participation transcends online boundaries, with members interacting through face-to-face meetings as well as other personal communications outside of the group's confines. They engage in multiplex relationships that incorporate more than one medium to maintain contact with each other, in some cases blending social worlds, which increases their ability to strengthen social networks and, thus, social capital (Haythornthwaite, 2005; Haythornthwaite & Hagar, 2005; Preece & Maloney-Krichmar, 2005). The online community space also takes on the character of a third place (Oldenburg, 1999) through participants' ability to “drop in” at any time to be among welcoming worldwide friends in neutral territory (Kendall, 2002; Orgad, 2006).
Postings often resemble personal narratives recounting extensive, diverse stories about breast cancer as well as typical day-to-day experiences. Comments range from expressions of gratitude, such as, “We spent the day [at] the doctor's…and you have all truly helped…through a pretty scary time…” to elaborate off-topic stories about travel adventures. Personal breast cancer narratives are often quite detailed with information about progression of the illness, side effects of treatment, or emotional states. In telling stories, participants offer insights into their ways of coping while at the same time indicating that there is other life during and after breast cancer (Høybe, et al., 2005; Orgad, 2006). However, while there are many postings thanking others for support and information, it is difficult to know the true impact of the community's exchanges on individual health situations without further investigation. Although in some cases it is clear that the information proffered has been used to negotiate treatment or conversations with medical practitioners, it is less clear how the online interactions influence medical decisions overall.
Based on these preliminary findings, subsequent research will consist of an ethnographic study comprising online participation with this group as well as interviews to gain a better understanding of the processes occurring within the community, the role that interactions have for participants, and the meanings generated through engagement with others in both online and offline contexts.
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