Bridging Disciplinary Boundaries (January 11 - 14, 2007)

Internet-mediated, mutual aid groups and communities are becoming important sources support for people with serious health problems. The actual number of these groups is unknown; estimates run in the thousands.  Their social importance is increasing, but relatively little research has been done to assess their processes and outcomes for participants. The Health e-Community Project, funded by the Robert Wood Johnson Foundation's Health e-Technologies Initiative, is the first multi-method, longitudinal study of processes and outcomes of multiple Internet mailing lists that  provide support for the same disease (Rimer et al., 2005). All the participating lists in the study are part of a loose federation of Internet cancer support communities hosted on the Association of Cancer Online Resources (ACOR) web portal. This presentation will review findings from two parts of the study: 1) findings from the content analyses of a systematic sample of email messages posted by cancer survivors on 10 ACOR mailing lists archives over November 2003-February 2004; and 2) survey responses from new subscribers to these mailing lists posted between April and August 2004. Methods

In the formative, qualitative study, we analyzed a systematic 9% sample of message texts (2755 messages) from the archives of 10 ACOR lists posted over a five month period. We used content analyses to compare group composition and across the 10 lists. We also conducted thematic analyses to identify the kinds of support exchanged by members who are cancer survivors in their correspondence to their lists. For the survey, 1368 invitations were sent out, and of these, 293 list members (21.4%) completed the survey. The survey included questions about the reasons participants had joined an ACOR mailing list and the kinds of support they received through their participation in their respective lists.  Results

In the qualitative study, we found that cancer survivors were far more likely to offer help than ask for it. In addition, list members were much more likely to offer informational support than emotional support. Surprisingly, list members were much less likely to offer each other emotional support. Listmates encouraged each other to advocate for themselves and be pro-active in order to get the best care. Our preliminary survey findings showed that new subscribers used ACOR mailing lists to obtain information and support, but particularly information. Thus, there is a good match in terms of the kinds of support cancer survivors want when they join these lists and what they are likely to get.  Implications for Social Work Practice

Study findings show that cancer survivors are finding cancer support mailing lists valuable resources for information. Social workers working with cancer survivors need to be aware of the extent and potential value of these resources as well as how their patients are using them.  

Rimer, B. K., Lyons, E. J., Ribsl, K. M., Bowling, J. M., Golin, M. J., & Meier, A. (2005). How new subscribers use cancer-related online mailing lists. Journal of Medical Internet Research. Retrieved November 15, 2005, from the World Wide Web: http://www.jmir.org/2005/3/e32/