[edit] What is a Health e-Community? (HeC)

Health e-communities are specialized social networks that function as virtual communities, using the Internet to enable members to use the Internet to share information and emotional support. The Pew Internet and American Life initiative recently reported that over 40 million adults have taken advantage of health e-community resources ^[1].

Soon after the Internet was invented, users discovered how useful it could to communicate with each other in groups. Online support groups began to appear soon after. Alcoholics Anonymous, for example, formed its first online groups in 1986 ^[2]. These groups provided social support, but members were limited to using text-based group communication technologies (such as usenet groups, bbs, mailing lists, and chat). With widespread access to broadband Internet and wireless connectivity, these virtual supportive social networks now provide members with information and support in using many different types and combinations of Internet media (Finfeld, 2000). The term “online support group” is still widely used to describe e-groups which rely on text-based communication. In this wiki, however, we will refer to all kinds of virtual support networks as HeCs, regardless of their size and the range of functionality.

Reference

Finfgeld, D. L. (2000). Therapeutic groups online: The good, the bad and the unknown. Issues in Mental Health Nursing, 21, 241-255.

--Ameier2 10:26, 25 February 2007 (EST)

[edit] Why a Wiki for HeC Listowners?

As the interest in and demand for online support has increased, so has our recognition that these support networks may not always be there when people need them. Many fail to thrive due to leadership or technical problems. Unlike face-to-face support groups, peer-led HeCs typically have not had backing from formal organizations. Although community and health care organizations have recently begun to sponsor professionally facilitated online support groups, the majority of HeCs are peer-led and do not have organizational backing. (See CancerCare for examples of this kind of e-group^[3])

Many people who organize HeCs have no prior experience with face-to-face support groups or professional training in group behavior or program management. They decide to go online to form a supportive network to meet their own needs without really knowing what they are getting themselves into. Many HeCs are not adequately publicized, so they don’t attract enough members to be viable. Those that do grow large enough to be viable can be disrupted by conflicts between members. When such problems erupt, and HeC leaders don’t know how to handle them, members leave. Another scenario: the HeC grows to be very large and members complain about message overload and loss of intimacy. If HeC leaders are unable to find other people to help them manage their communities, they can burn out and decide to dissolve their lists.

Leaders of long running HeCs in ACOR and elsewhere usually learned their roles by trial and error. HeCs originally established for the sole purpose of providing support to others with the same concerns can evolve over time into multi-purpose organizations, adding advocacy to their missions of support. As their HeCs grow and evolve, leaders discover that their roles become more complex as well. They now need to know how to facilitate discussions in much larger e-groups and how to manage the virtual organizations that form to support them. If leaders are unsuccessful in carrying out their roles and adapting to changing conditions, the lists are again at risk for dissolution. HeC members who have come to rely on their communities are at risk for losing resources that are important for their quality of life

In the offline world, support group leaders also get stressed out by their roles, but their organizations provide clinical supervision to help them cope with the strain(Burtow et al., 2005). This wiki was inspired by our belief that HeC leaders need support, so the benefits of their groups are sustained and they can continue to be effective in their roles. Currently, there is no systematic way for people who aspire to be HeC leaders to learn their roles. Nor has there been a central forum where more experienced leaders could discuss problems that predictably occur in HeCs and share their hard won expertise in handling them.

References

Burtow, P., Usser, J., Kirsen, L., Hobbs, K., Smith, K., Wain, G., et al. (2005). Sustaining leaders of cancer support groups: The role, needs, and difficulties of leaders. Social Work in Health Care, 42(2), 39-54.

--Ameier2 10:29, 25 February 2007 (EST)

[edit] What sources of information were used to create this wiki?

This wiki was developed for ACOR listowners and members, but with an eye toward the needs of listowners of HeCs for health problems other than cancer. Our goal was to establish an accessible and useful resource to help listowners and members keep their lists viable, and effective as sources of support. We have drawn on the burgeoning body of research in social psychology and sociology on support groups, virtual groups and e-communities. We also conducted online surveys and held a conference to get input from ACOR listowners. The examples we use in the articles come primarily from our studies of ACOR lists and consultations with ACOR listowners.

--Ameier2 10:29, 25 February 2007 (EST)

[edit] To HeC listowners and members: An invitation to contribute!

We hope that this wiki will provide a setting for ongoing discussions between ACOR leaders and list members (and anyone else interested in this topic) to better understand what conditions can help HeCs for cancer thrive. We believe that the wiki can lead to the creation of a dynamic “knowledgebase” of solutions to common HeC challenges and strategies for taking advantage of technological innovations. Please join us in the act of creation!

--Ameier2 10:01, 20 March 2007 (EDT)

[edit] How to start a New HeC

Main article: How to Start a New HeC

Thinking about starting a new HeC? The main article in this section will help you answer some key questions to guide the start-up process. Am I the right person to lead this new community? Is there a real need for another HeC on this topic? What software and list hosting service should I use? What should the community be called? Why is it important to have a mission statement for the HeC? What do I need to do to publicize and promote it so that people will join? What kinds of rules should the HeC have?

--Ameier2 10:02, 20 March 2007 (EDT)

[edit] Maximizing the Benefits of HeC Support

If you want to make your list as valuable as possible to members, it is important to understand some of the principles of social networks and group processes underly the communication of support in HeCs. The main articles linked to this section describe how HeC listowners and list members can adapt and apply these principles to ensure that list the list provides high quality information and that the tone of messages is encouraging and comforting.

[edit] HeCs as Supportive Social Networks: The Importance of Strong and Weak Ties

We participate in community through our social networks. Social networks come in many sizes. Our families, work groups and face-to-face support groups are examples of small networks that are usually composed of fewer than 12 people. They are made up of people with whom we spend the most time, have strong interpersonal ties, and are most likely to be the people we turn to in times of need. (Granovetter, 1983).

Small groups are important components of any community, but as social networks they are relatively homogeneous, have clearer boundaries and encompass a more limited range of functions than networks that make up larger communities. Our neighborhoods and geographically-based communities can include hundreds or thousands of people. With the advent of the Internet, the networks that make up our personal communities are not restricted to specific places and are often much more loosely woven.

“Community is best seen as a social network in which person has his/her own ‘personal community’ of kinship, friendship, neighboring and workmate ties. Personal communities are not limited to specific places. They traverse a variety of social settings and are generally far-flung, sparsely-knit, crosscutting, loosely-bounded, and fragmentary. These social ties vary in intensity and are maintained through multiple communication media: direct in-person contacts, telephone, postal mail, and more recently fax, email, chats, and discussion groups” (Hampton & Wellman, 2001, p.477)

In times of stress, we can be more resilient if we have social networks with both "strong" ties and and "weak" ties (Granovetter,1983). Obviously, having strong ties to people nearby is important because these are the people who can provide direct aid and emotional comfort. But because strong ties develop between people who are fairly similar, they may not be sources of new ideas and information. Weak ties link people to acquaintances who can serve as bridges to other social networks.

HeCs are valuable because they provide ready-made networks of weak ties for people confronted with health problems. They can provide current information about diseases and treatments--that may be unavailable locally--which can, literally, be lifesaving. They enable members to get first hand reports from other patients and their family caregivers (who could live down the block or thousands of miles away) about illness symptoms, treatment side effects, and experiences navigating the health care system. Armed with this information, new patients and their families can be better prepared to cope with the stressors they will face and work with their health care providers to make informed decisions about their health care.

References

Granovetter, M. S. (1983). The strength of weak ties revisited. Sociological Theory, 1, 201-233. [1].

Hampton, K., & Wellman, B. (2001). Long distance community in the network society:Contact and support beyond Netville. American Behavioral Scientist, 45(3)

See also “How Some Folks Have Tried To Describe Community [2]

--Ameier2 12:38, 20 March 2007 (EDT)

[edit] What makes a group work well?

Originally, HeCs were called electronic support groups because they share the goals for social support and some characteristics of small offline support groups. Obviously, there are significant differences between face-to-face support groups--which are typically composed of 8 to 10 members--and HeC mailing lists which can be much larger. Nonetheless, HeC listowners who something about how high functioning, face-to-face, small groups can draw on that knowledge to track how well their lists are doing.

Social psychologists have identified ways that small groups can develop over time. Usually, small groups limit themselves to a single purpose. In the case of support groups, the purpose is to provide information and emotional support for people coping with a particular life challenge. Members who are attracted to a group because of its purpose initially view themselves as a collection of individuals. Over time, members get to know and trust each other and begin to identify themselves with the group as a whole.

Groups that function well become cohesive. Cohesive groups develop standards that enable members to recognize each other. Groups that function well establish and enforce group norms. Group norms are the rules of behavior that help members to feel safe, manage conflicts, and set priorities so that the group is more likely to achieve its goals. For some examples of these rules, see the sample "rules of the road" [[3]] we suggested that HeC leaders could use when they first establish their their lists. Members participate regularly and are willing to commit time, energy and resources to achieve the group's goals. If there is an identified leader in the group, he or she encourages members enforce group norms and to assume responsibility for group activities. In this way, the group provides members opportunities to become more personally effective by giving them chances to learn and practice new social and practical skills.

[edit] Information and advice

[edit] Emotional support