[edit] Facilitating Routine HeC Challenges

[edit] How do I help HeC members create a community that feels supportive?

In supportive communities, members are responsive. When a member posts a message, it is important that he or she receives a reply soon--ideally, within 24 hours. If the original sender requests information, members who know something about the topic should try to provide it. Members who do not have the necessary information can help by empathizing with the sender's situation or by offering encouragement.

When members who follow the list see that other members are getting prompt and appropriate replies, they will develop an impression that the community is supportive. Listowners can teach members from the beginning about the importance of being responsive by discussing it in their welcome messages. They can also model responsiveness by keeping track of which messages do receive prompt replies. If members don't respond, the listowner should.

--Ameier2 10:59, 25 February 2007 (EST)

[edit] How do I encourage “quiet” members to participate?

Let's restate this question to: how much should I encourage quiet members to participate? Sociologists who study face-to-face groups, have referred—somewhat disparagingly—to members who are not active participants as ” free-riders,” people who benefit from the collective action of others without participating in the tasks of producing that benefit. In the online world, the term "lurker" has had this same negative connotation [1].

In small HeCs, most of the members must be active participants in order for the list to survive. As lists grow, however, a greater proportion of members need to relatively inactive in order to prevent everyone on the list from being overwhelmed with a deluge of messages. HeCs vary in terms of how much they tolerate this kind of passive participation. Some ACOR groups automatically track member activity levels and unsubscribe members who do not post. We do not know how different lists arrive at these different policies.

Remember, HeC members have many different reasons for not posting. Many quiet members on ACOR lists report that they read email from their lists every day (Rimer et al., 2005). In ACOR groups, some members may become too ill to be able use email. Some members may be post only rarely because they no longer need the day-to-day contact with their lists. These members may use their lists as a “security blanket,” and are comforted knowing that support is available if they need it. Some quiet members will only post when they are strongly moved by another member’s message. ACOR listowners generally accept the fact that “some members are shy and private, and do not wish to share their problems but only learn from others.” Findings from one exploratory study (Zhang & Storck, 2001), suggest that quiet members may play other valuable roles by bringing what they learn from tracking discussions on their lists to the larger offline community of people who are coping the same problems

As a listowner, you can use a number of different strategies to draw quiet members into the discussions. When new members join, you can ask--but not require--them —to introduce themselves. These introductory posts can “inspire” longer term members because they them to know that quiet members really exist. You may get to know the quiet members on your list because you communicate regularly with many of them off list. On some ACOR lists, listowners encourage members who query them privately with questions about treatments are encouraged to post their questions to the list as a whole. You may also post open-ended questions or prompts, such as “What I wish I had known before…” Or, if you haven't ear from a member in a long time, you can post messages to the entire list that specifically aimed at getting that member to respond.

--Ameier2 11:14, 25 February 2007 (EST)

[edit] What can I do to make the HeC helpful to members who live in other countries?

The Internet connects people from all over the world who have concerns in common. Since health problems are universal, it is not surprising that many HeCs, including those on ACOR, have international memberships. International members may encounter some barriers to participation because HeCs founded by Americans have discussions that are conducted only in English, Members from non-English speaking countries must also to be literate in English as well. International HeC members can be somewhat disadvantaged on lists where members contact each other frequently by phone and in-person visits as well as email. However, because HeC members can now easily get access to international VOIP services, such as Skype [2], this problem is diminishing.

If your HeC is going to attract international members, you will need to decide how much you will accommodate their needs. In ACOR, some listowners report that they don’t see much need to do anything special for such members. As they see it, cancer survivors in other countries suffer the same kinds of symptoms, disease related information is relevant to them. Many are on the same treatment protocols as patients in the US. Sometimes, listowners try to tailor information to international members’ needs. There are other examples of listowners doing more. One ACOR listowner reported that he had taken the initiative to find studies on cancer conducted by researchers from non-US members’ respective countries. If members from another country see a need for a list in their own language, listowners can assist them in establishing a new list. An example of this is ACOR's all-Swedish-language list for Swedish Breast Cancer survivors.

International members are valuable to HeCs because they can bring different viewpoints. In ACOR, these members are valued because they provide their American list mates with perspectives about the ways cancer care is provided elsewhere. International members may also offer members opportunities to express their altruism. On some ACOR lists, members from other countries have alerted their American list mates about critical needs of people in their home countries who were suffering with similar cancers, and the lists were able mobilize resources for them. For example, the Parents of Cancer Kids group helped an international member raise funds to get special medical equipment.

--Ameier2 11:30, 25 February 2007 (EST)

[edit] How do I help the HeC meet caregivers’ needs?

Caregivers are a diverse lot. The most obvious kinds of caregivers are family members who reside with the person who has the health problem, and relatives, friends and coworkers who live in the same community or nearby. However, the Internet also allows family members who live at a distance to stay actively involved.

On ACOR lists, all types of cancer-affected people are welcome to join, especially including family caregivers. Based on a previous multi-list study of ACOR HeCs [3], the proportion of caregivers appears to vary widely across lists. On some, they appear to comprise substantial minorities, many of whom are active participants on their lists. ACOR also has specialized lists only for family caregivers and parents of children with cancer, but those lists are heterogeneous in terms of the multiplicity of cancers of those members’ loved ones.

Cancer survivors on some ACOR lists openly acknowledge that caregivers have the “worst time of it,” sacrificing themselves and their own needs to support sick or dying loved ones. As a list owner, you will need to decide how explicitly caregivers’ needs will be addressed. You may decide to do it implicitly and assume that that caring is communicated to all members at the same time. Or, you may decide to offer explicit encouragement to caregivers to take care of themselves as well as their loved ones. For example, when caregivers are obviously at wits end due to cancer-related stress, you may want to recommend that they bring in more support and respite care.

--Ameier2 11:44, 25 February 2007 (EST)

[edit] What should I do when members seem to be very depressed or in crisis?

Reading about other members’ experiences with disease progression or symptom recurrence can be distressing to some members. In ACOR lists, most members want as much information as they can get so they will know what to expect and how to get the best care. But some members may be overwhelmed by all the technical information or statistics about survival and relapses. In general, listowners and members help each other by being responsive, by “listening and being there for them.” As a listowner, you can model this kind of support by posting messages that reassure anxious members they are not alone and that others have experienced the same feelings.

Where relevant research is available, members may draw on it to allay their anxieties. In ACOR groups, if research shows that a type of cancer is unlikely to recur, members who are anxious about recurrences are provided with this information and assured that if the cancer should recur, the group would help them get through it. On ACOR lists where cancers are often terminal, some members cannot bear the recurring bad news of other members’ deaths. In these situations, listowners or members may suggest that some other family member join the list and serve as the family’s “researcher.” In other cases, they may recommend that the distraught member take a break from the list for a while, but also encourage him or her to return when they feel ready.

A quick search of Medline shows that researchers have produced hundreds of publications showing that patients coping with various chronic and acute health problems often also suffer from depression and/or anxiety [4]. We would expect that HeC members would also struggle with emotional problems related to their illness, but the degree to which they post messages about them appears to vary across HeCs, even among those dealing with cancer. Some ACOR listowners report that they don’t have many members who are in such extreme distress. Other listowners report that they and their members are quite attuned to symptoms of depression. ACOR listowners will privately contact members who appear to be severely depressed and recommend that they seek professional help. In some groups, it is the caregivers who are more likely to talk about emotional crises. If a loved one is dying, a member may post messages like “I’m not sure I can handle it.” Listowners and other members will try to comfort and reassure them that they can handle the situation.

In ACOR, members tend to endorse the use of antidepressant use as a means of coping with stress. Those who are using them--or have found them helpful in the past-–often write about their experiences with them. Many ACOR survivors and caregivers are on antidepressants themselves and recommend them when it seems appropriate. If other members don’t suggest it first, you may want to take the initative and recommend that members who appear to be in distress consult with their doctors about getting anti-depressants

--Ameier2 11:59, 25 February 2007 (EST)

[edit] How do I help HeC members deal with dying, death, and bereavement?

HeC members' levels of concern about death and bereavement depends on the purpose of the community. In HeCs for people with non-life threatening ailments, this concern is unlikely to be much discussed. Even for cancer, the degree of lethality differs by the type of cancer. It is not surprising, therefore, that ACOR listowners on different lists report wide differences how often members post messages about impending loss of loved ones and anticipated bereavement. As a listowner, you will have to decide how much to encourage such sharing. A listowner of a list where such sharing about bereavement is encouraged commented, "Members know that the list is full of compassionate and wise members, many of whom have also experienced a death of a loved one from cancer. Grieving members know that list members can empathize with what they are going through."

When members post messages about facing the end of life, listowners or list members can offer information about support resources for dealing with these issues. As a listowner, you can try to tailor suggestions to members’ individual needs. If a member wants in-person support, you or list members can suggest the types of local agencies that could provide those services. You may also suggest websites and other Internet resources. For ACOR members who want their support via email, there is another list, “Facing Ahead,” which is organized for those who wanted to talk about the dying process. You may want to encourage members to bring in hospice care [[5]]. When members’ deaths are announced, you and other list members may respond with condolences and share recollections of how the deceased member’s messages were personally helpful or were valuable to the group as a whole.

--Ameier2 12:13, 25 February 2007 (EST)

[edit] How can I help HeC members cope when a listowner gets very sick or disabled, or dies?

Many HeCs are organized for people with life threatening conditions by listowners who are themselves survivors. This means that the entire community may ultimately be forced to weather the extended illness, debilitation, and eventual death of one or more of their listowners. It is such situations that illustrate the importance of a well functioning listowner team [6]. Several ACOR listowners who helped in the development of this wiki have had health problems that limited how active they could be on their lists. In those situations, other team members compensated, taking over their list responsibilities. One commented, “I was sick for 6 months last summer and fall and winter and members and other LOs took over what I was unable to do. We all work together!” When a deceased listowner has not been very active as a facilitator, most members may not have become personally acquainted with him or her. If the listowner team is functioning well, the loss of that listowner may have little impact on members’ experience of the list.

After the death of a listowner, list members and surviving listowners may work through their grief by establishing memorials or enacting rituals that commemorate his or her life. For example, the community may decide to establish a memorial website. For example, when the founder of one ACOR list died, those who participated in the memorial website project found “that working on [the website] renewed [their] dedication to helping each other out.” On another list, the community marks the death of list’s co-founder each December with a new round of getting to know new members. When listowners die, the list owner teams have to find new members to replace them. On several lists, widows of the deceased listowners have commemorated their husbands’ lives by taking their places on the team.