[edit] Information to help members in their health care decisions

As a listowner, you should try maintain an environment in which members feel safe in asking all kinds of questions and to model how to respond to questions in ways that don't make the person asking the questions "feel stupid.” You should also work to insure that information that gets posted is of high quality. This includes means double checking to confirm that the research that members post to the list has valid scientific backing. ACOR listowners report that they provide information about legitimate websites on drugs and clinical trial databases and non-Web resources. They try to make research accessible to members who do not have scientific training by summarizing current research.

You must also be vigilant for disinformation that may get sent to your list. On most of the ACOR lists, members are discouraged from posting messages about herbal cancer cures and “other quackery” (ACOR has established a special list for members who want to discuss complementary and alternative healing practices-see section on List annoyers and destroyers). Keep an eye out for long term members who are knowledgeable who you can consult offline when you are unsure about information contained in a post.

The type of information that members in your HeC share will, obviously, depend on the purpose of your list. For example, cancer patients must learn lots of information about their disease and treatments, so there is lots of discussion on the ACOR lists on the technical details of those subjects, as well as on progress in research and opportunities to participate in clinical trials. In HeCs for people living with emotional or mental health problems, there may less need for the same level of technical understanding and fewer opportunities for members to participate in clinical research.

Listowners should encourage members to combine research evidence and their own experience in their messages, because it increases the reliability and validity of the information. In ACOR, members often supply references to research to support what they say about conclusions drawn from their own experiences. If a member doesn't provide supportive evidence him or herself, listowners or fellow list members may initiate their own confirmatory Web searches. Members and listowners post the results of such searches providing references to online information sources and medical research abstracts. They also help each other access full texts of articles describing medical research. The strength of weak ties in HeCs is shown when members are able to bring expert knowledge to the list. In ACOR, when members post incorrect information, others usually follow up quickly with corrections.

No matter what the problem, all HeC members are likely to want to discuss what makes a good health care provider, a good treatment facility, and/or what constitutes excellent care. Make sure that your list offers members opportunities to trade anecdotes about their treatments and exchange advice about where to get the best treatment. In ACOR, for example, members often share their experiences with different treatments. There are frequent discussions about types of prescribed drugs, combinations of drugs they have used or complex treatment regimens they have been on. They share information about which ones have been effective or have caused serious side- or late-effects. Members often want to report on their experiences with specific doctors or the services offered at specific health care facilities.

--Ameier2 16:10, 20 March 2007 (EDT)

[edit] Problem solving

When the discussion turns to problem solving, members value the experience of their peers. As a listowner, you can usually leave problem-solving to list members. As one ACOR listowner remarked, “I just sit back and watch them work.” As in other situations, you may decide to post a comment when questions raised in such discussions go unanswered. If the debate gets too heated about the value of one alternative over another, you may decide to intervene to settle squabbles.

The advantage of asynchronous communication on mailing lists is that all members can write as much as they want on any topic. Although they know that not everyone in the community will read every message, members are more likely to be exposed to a wide range of ideas and information that can provide them with ideas about alternative strategies for solving common problems. It may be helpful to remind members that not all of their list mates read messages from the list daily. You can encourage them to "double post" information of general interest--once to the list and then privately to individual members whom they believe could benefit from it.

--Ameier2 16:11, 20 March 2007 (EDT)

[edit] Facing the future

The significance of illness progression in an HeC depends on whether the list was formed for people with life threatening illnesses or chronic conditions, and whether a member is a patient or caregiver. Members who have survived for a long time can provide information about how to cope with the early stages of the disease and treatment to those who are newly diagnosed. In HeCs for people with chronic conditions, members need to discuss how they are coping with limitations as the severity of their conditions changes over time. They are much less likely to have to grieve over list members’ deaths or sympathize with their caregivers’ bereavement.

In HeCs where the focal illness can be terminal, members need to be able talk about dying or death. In ACOR, where members do die, listowners report that they “don’t feel different [from other members] on this issue.” They encourage members to keep an atmosphere of mutual respect. When the list is informed that a member is near death try to ensure that it is discussed openly. If you are a listowner in this type of HeC, regardless of whether you are a survivor or a caregiver, it is important that you feel free to share your feelings and perspectives when this topic arises.

In HeCs for life threatening illnesses, members’ stage of illness may affect how they react to messages about their fellow list members’ progressive debilitation, dying and death. Newly diagnosed members may be intent on doing everything they can to survive. They may feel uncomfortable and have difficulty relating to end of life discussions. Some may decide to withdraw from the HeC because they can’t tolerate hearing about the future they may face. When members decide to unsubscribe because they are emotionally overloaded, you should encourage them to come back when they are ready for the kind of support that they now know the HeC can offer. On ACOR lists, members who are cancer survivors can discuss openly their experience with the disease from diagnosis to impending death. Members who have the technical skills may set up personal websites “to share the journey” that fellow list members may read.

When members begin to discuss dying and death, they may be moved to express religious views. Overt religiosity may be offensive to other members. Listowners of HeCs for members who have experienced catastrophic loss, discourage intensely religious members from offering support inappropriately by evangelizing [See for example, HeC Challenges: List annoyers and destroyers. If this happens in your list, you need to be sensitive to the distressed member's needs but also discourage religious exclusiveness and proselytizing. Encourage members to hold attitudes of spiritual acceptance, and help them to find resources for spiritual support.

When members become too sick to post messages, other members of their families may continue to post to their lists. Encourage them to update the HeC about the their loved one's status. HeCs for life threatening illnesses can also provide surviving family members opportunities to talk about anticipatory grief and, after the member’s death and get support in their bereavement with others who knew their loved one.

Family members who become involved with the list can be important resources for the health of the community. On ACOR lists, family members who have benefited from their list’s support may stay subscribed to support other members whom they have gotten to know or join their list’s listowner team.

--Ameier2 16:13, 20 March 2007 (EDT)

[edit] Modeling effective coping

In general, HeC members rarely give direct advice. Researchers have found that when e-community members ask questions, they are more likely to get descriptions of others' personal experiences coping with similar situations rather than direct advice (Joyce & Kraut, 2006). Members can't see each other, so these kinds of exchanges can provide the inquirer with contextual information to judge whether the person replying to the question has experienced similar situations. This also makes it easier to assess how applicable the respondent’s coping strategy would be. It seems as if members learn this style by reading many examples rather than through list rules. In the ACOR lists we studied, there were no explicit instructions against advice giving, but members usually followed this pattern.

When members do indulge in advice giving, some members can be too emphatic and authoritarian in their suggestions, prompting listowners to take direct action. The List annoyers and destroyers section provides examples of how ACOR listowners have managed these situations.

Although HeCs are organized to help members address problems, you should also encourage list members to post information about their successes and triumphs. On ACOR lists, this kind of information appeared in a variety of forms. Some members simply posted messages on these topics. Others implemented personal websites where they describing how they coped with various problems, who helped them and where they went for support and notified the list.

As a listowner, you may gain recognition as an expert on effective coping. Your expertise may be based on your experience as long-term survivor of an illness, Or, you may have been a caregiver for someone else who had it.(Some ACOR listowners have experience in both roles, being cancer survivors themselves as well as the spouses of cancer patients who have had several different kinds of cancer.) Since listowners are often long-term members of their lists, they can also report on coping strategies that have helped other members.

Listowners also can give members access to models for effective coping by implementing searchable archives of all posts sent to the list. Archives can help members overcome the inevitable fragmentation of information associated with email communication. You can remind members that they can reconstruct their impressions of a particular member by sorting that person’s email address and compile a history of his or her participation since the introductory message. In this way, members can understand how their list mates adapted their coping strategies over time to their changing circumstances.

If you do establish an archive, you must decide whether to make it open to the public, password protected and accessible to members only or accessible only by listowners’ permission [see section on listserv management]. This is not a trivial decision. Archives can be used to discover email addresses of and information about members who want this information to remain confidential. In ACOR, each list’s archives are open only to the members of that particular list (although members can belong to more than one ACOR list).

References

Joyce, E., & Kraut, R. (2006).Predicting continued participation in newsgroups. 11(3), article 3. [Electronic Version]. Journal of Computer-Mediated Communication,, 11 [1]