The importance of the Internet as a health resource is demonstrated by the fact that 8 out of 10 Internet users in 2005 reported looking for health information online, most commonly seeking information on specific diseases and certain medical treatments [1
]. In the United States, it is estimated that 56.3 million people actively seek information about chronic diseases [2
], and the information they gather affects their health choices [3
]. Internet users report employing the information they find on the Internet to diagnose health problems, enhance their medical care, and to validate the advice they receive from doctors [5
An estimated 100 million Americans report ever having been members of some type of online group, and 79 million Americans have become members of online support groups [6
]. On the popular Yahoo site alone, users can choose from over 30000 health-related support groups. The World Wide Web and email now permit a variety of group communication formats, many of which are widely used and have been described in detail elsewhere [7
]. Here, we will describe our work with one type of group format—the mailing list, also known as an email discussion group. In Internet mailing lists, email messages (asynchronous communication) from authorized senders (subscribers) may convey information and support to other list subscribers. In the case of eHealth support lists, many subscribers are living with similar health conditions or are caregivers to survivors.
Some sources estimate that as many as 1 in 4 disease information seekers join online discussion groups [8
]. Approximately 23 million people are reported as very active in online communities [9
]. Our recent count of 33000 health-related online self-help groups on Yahoo shows that participation in electronic support groups (ESGs) continues to grow. This estimate represents a 32% increase over the number reported by Eysenbach and colleagues in 2004 [10
]. Although estimates vary greatly, millions of people in the United States and, increasingly, around the world are turning to online support groups to deal with health concerns. (Most online support lists are hosted in the United States but are accessible outside US boundaries. For a description of online support groups sited outside the United States, see [11
ESGs Within Virtual Social Networks
There is an ongoing debate about whether support lists should be considered ESGs, informal grass roots virtual organizations, or electronically networked communities.
Mailing Lists as Support Groups
Support mailing lists are similar to traditional offline self-help groups in that they are “composed of members who share a common condition, situation, heritage, symptom or experience [12
].” eHealth support lists and offline self-help groups share the goal of helping people learn about and cope with a variety of risk factors, diseases, and conditions.
Typically, offline face-to-face support groups are small, composed of 10 to 12 members. In face-to-face groups, the small size makes it easier for members to interact with each other, to build trusting relationships, and for the groups to become cohesive [13
]. By contrast, online mailing lists can have hundreds or even thousands of members, many of whom post messages infrequently, if ever. Using a liberal definition of participation—at least one post within a three-month period—Nonnecke and Preece found that only about 55% of subscribers to a virtual health support group could be described as active participants [14
]. Those members who post with some regularity often become acquainted and emotionally bonded with each other, forming subgroups that function like cohesive face-to-face support groups. The impact of participation on lurkers, those who read messages but don’t write them, is unknown.
Currently, most ESGs appear not to be professionally facilitated but rely on peer leaders, making them more like self-help or mutual aid groups than professionally facilitated face-to-face support group interventions. The Association of Cancer Online Resources (ACOR) mailing lists we studied follow the peer leader model. Many of the listowners are extremely knowledgeable about health and cancer. These peer-leader listowners intervene both online and offline as needed to correct misconceptions, enforce group norms, and provide information, but they aim to do so as infrequently as possible [12
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
]). 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
] or how Internet communication has made it possible to offer support to greater numbers of people—especially those with rare diseases [19
]—in ways that are satisfying and empowering to most participants [18
]. 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.
Research Methodology and ESGs
Researchers have found naturally forming online groups that offer peer-to-peer social support difficult to study using conventional methods because both format and content are difficult to replicate using controlled methods [10
]. Some have tried to cope with this methodological challenge by forming project-specific ESGs as components of multi-modality intervention studies. Typically, these ESGs have used closed memberships, trained facilitators, and limited brief durations. In this respect, such project-specific ESGs used as formal interventions have greater similarity to face-to-face support groups [13
In a recent systematic review of 38 studies on the effects of peer-to-peer interactions in health-related virtual communities and ESGs, Eysenbach and colleagues concluded that only six studies evaluated pure peer-to-peer communities [10
]. In the Eysenbach review, qualifying studies tended to have “less than optimum research designs” in that they were exploratory in nature, used nonexperimental designs, and had small sample sizes. One study had a 2 × 2 factorial design (full version website or control group website combined with or without peer-to-peer groups) that allowed an evaluation of the peer-to-peer component; the 31 remaining studies evaluated complex interventions in which online communities were only an adjunct to broader interventions [10
]. These findings were similar to those of an earlier systematic review of the research on online cancer support groups (published from 1993-2002) conducted by Klemm and colleagues [17
In the six peer-to-peer community studies included in the Eysenbach review, the type of ESGs varied across studies and included Web-based discussion forums, chat groups, combinations of chat and newsgroups, mailing lists, and one voice bulletin board system. All ESGs included in these studies had some degree of formal facilitation by health professionals. The role of health professionals as facilitators was to stimulate discussions by posing questions to the group, to post topics of interest to the group, or to provide educational materials. Some studies that used project-specific ESGs observed a possible dose-response effect between higher rates of participation and better outcomes for problems such as depression [26
], caregiver strain [28
], and increased perceived social support among people with diabetes [29
]; however, the direction of causality is uncertain. Given the dearth of research in this field, we can only affirm that findings about the benefits of ESGs are promising but inconclusive. It is worth mentioning that Eysenbach and colleagues noted that no negative effects were reported. They further concluded that, because of the complexity of ESGs and methodological challenges, lack of evidence should not lead to the conclusion that ESGs are ineffective [10
]. Rather, there is insufficient evidence regarding their efficacy. These cumulative findings suggest that ESGs—both pure peer-to-peer and short-term interventions—may play important mediating and moderating roles, creating the conditions that promote participant self-efficacy and positive health behaviors [10
]. This research focuses on the extent to which peer-to-peer groups for different types of cancer contribute to these constructive attitudes and behaviors.
The underlying conceptual framework for the Health eCommunities Project (for detailed description see [30
]) was applied in developing the initial coding framework for our analysis. Briefly, the framework is informed by a general model of stress and coping [31
] based on Lazarus and Folkman’s theory of stress and coping [34
] (). Coping is a process of managing stress, initiated when a person appraises problems as exceeding their individual resources [35
]. Here, we use two major categories of coping: problem-focused and emotion-focused [34
]. Problem-focused coping entails constructive action to change the stressful situation. In the context of online mailing lists, problem-focused coping might be seeking treatment information online or researching complementary and alternative medicine. Emotion-focused coping uses actions to change an individual’s emotional response to the stressful situation. Emotion-focused coping in an online community might occur when a member vents strong emotions by writing about them or when he or she avoids or denies such feelings.
Figure 1 Simplified model of stress and coping (Adapted from stress and coping models developed by Northouse LL, Caffey M, Deichelbohrer L, et al. The quality of life of African American women with breast cancer. Research in Nursing and Health 1999;22:449-460 (more ...)
Either coping strategy can lead to positive or negative outcomes depending on how well matched it is to the situation. According to this framework, when people confront stress, personality characteristics, external resources, and social support can influence coping, thereby mediating the effect on psychological outcome [36
]. Social support can facilitate an individual’s positive efforts to cope, potentially bolstering both positive problem-focused and emotion-focused coping.
The Health eCommunities Study
The Health eCommunities study is a multi-method project, using both quantitative and qualitative methods, designed to assess the impact on cancer survivors and their caregivers of participating in mailing lists sponsored by ACOR. Health eCommunities represents a collaboration between the ACOR leadership and an interdisciplinary team from the University of North Carolina at Chapel Hill (UNC). An overview of the study and preliminary survey findings have been reported elsewhere [30
Established in 1996, ACOR is a non-profit Web portal that offers users access to a rich array of information and support for cancer survivors, family members, friends, health care professionals, and researchers. The website also provides links to information about treatment options, clinical trials, and cancer-related books. As an organization, ACOR is a loose confederation of more than 150 publicly accessible mailing lists that range in size from very small (< 10 subscribers) to very large (> 2000 subscribers). The mailing lists are run by dedicated volunteer teams of listowners, most of whom are cancer survivors or surviving spouses or friends of deceased ACOR members. ACOR capitalizes on listowners’ expertise by offering listowners their own mailing list in which to discuss shared problems in list management and facilitation. In addition to running their own lists, listowners may serve on one or more other ACOR listowner teams.
This paper focuses on the qualitative component of the study, including content and thematic analyses of email message texts exchanged by ACOR members (survivors and caregivers) in 10 lists. Recent technological innovations in automatic text analysis now make large-scale studies of support lists possible [37
]. Our project is unique among the body of qualitative studies of mailing list–based email correspondence (most using manual coding) because it represents one of the largest samples of message texts of ESGs for related illnesses (eg, different types of cancer).
Because relatively little is known about ESG functioning, we began with two global questions: (1) What are the major concerns of ACOR members? and (2) What kinds of support do these groups offer? However, an additional focus of this paper reflects our unexpected finding that list members were more likely to send messages offering support than they were to request support. This finding was unexpected because previous studies of ESGs reported that most Internet users go online seeking both information and support; therefore, we expected that ACOR members would request support at least as often as they offered support. Further, list members who had the most direct need for support, the cancer survivors, were much more likely to offer support more often than listmates who were caregivers. For these reasons, this paper is devoted to an examination of cancer survivors’ characteristics across the 10 ACOR lists, their patterns of supportive behavior, and the ways they used their collective Internet connections to promote their own and others’ ability to cope.