Support Lists as Grassroots Organizations and Virtual Communities

The list subgroups described above exist concurrently within larger networks that resemble grassroots organizations. Because mailing lists are embedded in the Web, members can follow links to additional information sources. In many ways, lists act as a portal for members, leading them to further explore the Web and to discover the external, socioeconomic, and structural factors that contribute to their health concerns. In this respect, support lists are like their offline grassroots counterparts in that they can organize around “communities of interest” to address social injustice. (In this instance, the injustice involves the unmet needs for support, access to treatment, and resources for cancer-affected people [15, 16]). As in offline grassroots organizations, support lists tend to be composed of members who share similar concerns, and the groups’ informal organizational structures enable quick response to changing circumstances.

Research on Therapeutic Factors and Outcomes of ESG Participation

Anecdotal and descriptive information about online self-help processes suggest that virtual communities are possibly the most important aspect of the Web, with the biggest impact on health outcomes [10]. Research in this area is still in its early development; consequently, rigorous studies documenting these benefits are difficult to find. Much of the research to date has focused on describing how social support is communicated online [17,18] or how Internet communication has made it possible to offer support to greater numbers of people—especially those with rare diseases [19,20]—in ways that are satisfying and empowering to most participants [18,21-23]. Because ESG participants are invisible to each other, it is easier for members to communicate about common concerns. Participants, particularly patients in illness support groups, do not have to be concerned whether their personal appearance will affect others’ reactions to them, and race, gender, and other sociodemographic differences are not immediately apparent [24]. Members may increase their self-confidence by becoming better informed about their illnesses. These processes appear to enhance self-esteem and increase participants’ comfort level in dealing with health professionals [5]. Participation in ESGs may help cancer survivors find information, obtain support, formulate questions to ask health care providers, and become more active partners in their care decisions [25]. However, while prior reports are encouraging regarding the impact of ESGs, the data were from uncontrolled studies.