It doesn’t matter whether members are patients or caregivers, they join support groups because they are feeling vulnerable and beleaguered. HeCs can help list members feel better about themselves because they offer opportunities for members to play constructive new roles (Ziebland, 2004). They can contribute to others through informal leadership roles, and to have other members acknowledge the value of their efforts (Cutrona & Suhr, 1994). Longer-term members help by responding courteously to inquiries and by expressing concern for individual situations. Ideally, members are also tolerant of individual differences, valuing each person’s opinions and trying not to be judgmental when they disagree. Often messages are sent to the list in general, but include content that is meant for specific individuals. If a family is going through rough times, many may send posts to the list expressing concern as well as posting more private messages to individual email addresses.

Members who are helpful get feedback about the ways that their helping efforts have been amplified by the list. Members frequently post messages thanking other members who have shared information or ideas that have been useful—not just to them personally but also to countless others on the list. Generally, listowners will let group members express their appreciation to helpful members. Sometimes, if a member has done something particularly helpful for other list members, the listowner will acknowledge it in a message, sometimes writing to the whole list, sometimes privately.

People express empathy when they show that they identify with another’s feelings (both positive and negative) and offer reassurance that their reactions to stressful situations are normal and appropriate (Cutrona & Suhr, 1994). ACOR listowners commented that members’ empathetic comments were similar to those aimed at helping each other know that they are not alone with their problems. In a well functioning HeC, members respond respectfully and sympathetically. Many messages include comments like ”We’re all in this together… “I understand how you feel…” and “Things will get better.” Although these messages are directed at individual members, others in the HeC who read them may also take them personally and find comfort (Galegher et al., 1998). In HeCs, members differ in the stage of development of their illness or problem. Members who are in the later stages of their illness also communicate empathetically when they help members at earlier stages “know what the future will be like and what it will feel like” (Hoybye, Johnasen, & Tjornhoj-Thomsen, 2005).

Listowners monitor the intensity of emotions expressed in members’ messages. They may reply to emotional messages, reflecting back feelings expressed in emotionally charged statements. To avoid misunderstandings, they may preface their comments with comments like “some of us have struggled hard with this…” and “other members have worried about this issue too…” Listowners also help to make their groups empathic by discouraging aggressive or superfluous postings (Preece, 1998). They set standards for what constitutes a supportive post. To reduce the flow of messages with little content, they encourage members to send supportive, one-line messages—such as “atta-boy!”–as private posts.

With some problems, things can get better. For others, the long term prospects are poor. Regardless of the anticipated outcome, support groups can help members sustain hope. Whatever the problem, there are usually other members who have weathered similar situations and who are happy to describe how they did it. For newly diagnosed cancer patients, longer term members can help dispel fears that they will die soon. Sometimes, members share information from medical studies to as evidence for their optimism about treatment outcomes. Where improvement is possible or likely, members can share experience of beating the statistical odds (e.g., surviving beyond the median survival times for metastatic cancer). In ACOR groups, members provide information about new types of treatments and evidence that treatments can and do work. The value of a large, geographically diverse population really is shown at this point. When getting information about treatment options, list members have a huge advantage over other people depending only on their own doctor, because they have access to patients of doctors in other geographical areas. They also encourage each other to seek second and subsequent opinions from specialists in their particular type of cancer. Often, members who have reached the post treatment phase stay in the group to help others who enduring the treatment process.

Listowners and members encourage each other to be active in educating themselves about the nature of their problems and available treatment options. ACOR listowners help members find abstracts about published studies that give evidence about survival rates and treatment outcomes. If members are having trouble understanding the research, listowners may help to interpret study findings. Listowners may also help members identify and access the best places to get treatment. ACOR listowners report that they post lists of NCI-designated Comprehensive Cancer Centers and assistance that is available (free airfare, lodging, etc.) if members have to travel to get care. Listowners also play an important role when members write that the future looks grim. Listowners try to help members make the best of bad situations by encouraging them to take small steps, focusing on the times that remain. One ACOR listowner wrote, “I use an old expression ‘inch by inch, life’s a cinch. Yard by yard, life’s hard.” For ACOR members, sometimes, stopping treatment—either temporarily or permanently—can be the best choice. When members advocate “don’t give up” too emphatically, listowners may redirect the discussion to focus on quality of life, taking a break from treatment or bringing in hospice.

When HeC members find themselves stymied in their efforts to remedy or cope with their problems, they may post their concerns to the group. In these situations, Listowners and members respond with suggestions based on their experience. In ACOR, these replies can include suggestions of doctors to contact and articles to read. Members are encouraged to educate themselves about their problems and treatment alternatives so they can be well informed when they communicate with their doctors or other health professionals. Listowners will step in with encouragement and information if members don’t respond. Sometimes members post incorrect information. Usually other members correct the errors,but if members don’t do it, listowners will. In general, listowners strongly believe in posting replies to the group as a whole since they never know when a message directed at one member will help another. If a member appears to be very depressed and demoralized, listowner may decide to send information and support privately.

In addition to the benefits of emotional and informational support, HeC members can benefit by learning the cognitive strategies and interpersonal skills needed to be personally empowered. The information members obtain through their HeCs can help them become more effective in advocating with health care providers, insurance companies, and local agencies, for themselves or on behalf of their loved ones. By networking through their HeCs, members can mobilize to change policies, create new resources, and promote social justice. This section describes how HeCs can help members become personally empowered. The Managing HeC Growth section describes in more detail how HeC members can engage in collective advocacy.

Being a part of an HeC can help members feel existententially more powerful. Other sections of this wiki describe the important role HeCs play in helping members become well informed about their illness or problem. HeC members consistently report that having the knowledge they need to understand their diagnoses, treatment options and risks helped them feel more in control of their bodies and increased their wellbeing (Hoybye et al., 2005).

Further, serious or chronic illnesses can isolate patients and/or their caregivers physically and emotionally. Participating in an HeC, members can develop a whole new set of intimate relationships with people who are willing to read about all the details of illness, treatments, caregiving, and experiences of loss that others in their offline social networks may not want to hear. Confiding to an understanding audience to write can help sustain a sense of “humanness” (Hoybye et al., 2005). Moreover, the “act” of putting painful experiences into writing and cognitively re-casting experiences of the world so that they include illness are ways of thinking that can be personally empowering (Hoybye et al., 2005).

In the section on emotional support, we described how HeC participation can enhance member self esteem which in turn contributes to their personal empowerment. Members who are ill learn that they can play roles other than that of patient and that they can take on positive new roles within their e-communities. Members who begin to be active contributors come to appreciate how valuable and gratifying this kind of participation in the group can be. Even new members find that they can help others. “Newbies” who review the archives and follow the discussion can, after a few weeks, answer questions from newer members. By following the discussions, members learn that they can make a contribution by sharing their experiences with similar situations, or even simply replying with an encouraging comment or empathetically to let other members know that they are not alone in their distress. Some members become researchers for their HeCs, initially searching on and off line to find answers their own questions and bringing their discoveries back to the group. Later, because they have developed information gathering skills, they search for information to answer other members’ questions. When they post often enough so that others to know that their contributions will be accurate, helpful and supportive, members can be recognized as “elders’ in the group (Ziebland et al., 2004).

Effective listowners demonstate these empowering behaviors and encourage members to model them for each other. Members may view their listowners as “resident know-it-alls,” so listowners try to “step back” and encourage others to share knowledge and become recognized as community expert. When members demonstrate that they are knowledgeable and contribute accurate and relevant information to the discussions, listowners often write to them privately expressing appreciation for their efforts. These resident experts are also identified as possible future members of the listowner teams. Helping members negotiate effectively with the health care system. Patients and caregivers can be bewildered by the information they receive from health professionals and frustrated with the labyrinth of the U.S. (or another country’s) health care system. ACOR members often report that they are having problems negotiating with health care professionals. In general, members try to help each other take charge of their health care so that they are not at the mercy of the providers. Some may just offer sympathy and encouragement to keep working to find a solution. Others may offer suggestions about how they handled similar situations. Members may critique a doctor’s advice when it “doesn’t’ sound right.” They encourage seeking second opinions, or refer others to resources that might help address specific situations.

When members report their struggles with these kinds of systemic barriers, listowners respond the same way other members do. In addition, listowners endorse members’ discussions that critique professional advice, reminding them that “doctors are not gods” and that patients and caregivers have the right to question their decisions. [edit] Dealing with Special Situations

The membership in HeCs can be diverse in many different ways. ACOR lists are composed of survivors and caregivers, people who are newly diagnosed and long-term survivors. In POS, members are all parents of children who died by suicide, but they vary in terms of the amount of time that has passed since the catastrophe occurred. Some POS members find the HeC in their desperate attempt to find help soon after their child’s death. Others may have unresolved grief from the deaths of children who died many years ago. Some of their children were very young when they killed themselves; others were adults. Members also vary in terms of their material and emotional resources. Below we describe how listowners help their HeCs to be responsive to members’ unique situations.

[edit] Encouraging “quiet” members to participate

Although lurking is a common practice on mailing lists, quiet members still benefit from extra encouragement. Many report that they read email from the group every day (Rimer et al., 2005). Some quiet members will only post when they are strongly moved by another member’s message. POS and many ACOR groups 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 their lists to the larger offline community of people who are coping the same problems

In face-to-face groups, members who are not active participants are often referred to—somewhat derogatively—as ” free-riders” who benefit from the collective action of others without participating in the tasks of producing that benefit. In small HeCs, most of the members must be active participants in order for the list to survive. As lists grow, however, it becomes necessary to have a large proportion of quiet members in order to avoid message overload. 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.

HeC listowners often get to know quiet members because they communicate regularly with many of them offlist. This means that listowners can post messages to the entire list that are specifically aimed at getting a quiet member to respond. They may use this tactic if a member has not been heard from in a long time. HeC listowners use a variety of strategies to draw quiet members into the discussions. When new members join, they are usually asked—but not required—to introduce themselves. These introductory posts can “inspire” longer term members by helping them to know that quiet members really exist. Listowners may also post open-ended questions or prompts, such as “What I wish I had known before…” On POS, the listowners post a daily discussion question to engage both quiet and active members. Quiet members on ACOR lists who query the listowners privately with questions about treatments are encouraged to post their questions to the list as a whole.

In some cases, members may be quiet 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. POS has an automated system to remind all members of the milestone (birth and death) dates of their sons and daughters, in addition to a special remembrance list which is attached to every message going to the group. Some POS members send private notes to members on those milestone days. The recipients of those posts often “come out of hiding” and reply to the list with their thanks.

[edit] Helping members who live in other countries

The Internet allows people from all over the world who have concerns in common to join HeCs. Both POS and ACOR HeCs have members from countries outside the U.S. Since these HeC discussions are all conducted in English, any member from another country who wants to participate has to be literate in English as well (ACOR has one very small list for Swedish Breast Cancer survivors in which members post in Swedish).

ACOR Listowners do not appear to see much need to do anything special for members residing in other countries. Because 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 act to tailor information to international members’ needs. One ACOR listowner reported that he had taken the initiative to find studies on cancer conducted by researchers from non-US members’ respective countries.

International members can bring different viewpoints to their HeCs. ACOR members living outside the US are valued for the ways that they provide their American list members with perspectives about the ways cancer care is provided elsewhere. International members may also alert their American list members to critical needs of people suffering with similar problems in outside the US. The listowner of the Parents of Cancer Kids group noted that her HeC helped an international member raise funds to get special medical equipment.

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. POS members have found that they can overcome this barrier by using voice over Internet protocol (VOIP) services to call list members who live outside the U.S. There are also POS members who travel abroad frequently and who visit list members in their home countries as often as they can.

[edit] Meeting the needs of caregivers

HeCs differ in the ways that they deal with list member heterogeneity. In general, on ACOR lists, all types of cancer-affected people are welcome join. Based on a previous multi-list study of ACOR HeCs [Link to MEIER et al-2006 ppt presentation at e-health conference], 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 (we do not know to what degree caregivers participate on other patient-focused HeCs for other kinds of physical illnesses). 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. POS restricts its membership to biological and adoptive parents of children who died by suicide, but has established other HeCs for family and friends.

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 family members. Listowners on some lists report that caregivers’ needs are addressed implicitly by the communicating of care to all members. On others, caregivers are explicitly encouraged to take care of themselves too. When a caregiver is obviously at wits end, listowners may recommend that they bring in more support and respite care.

Reading about other members’ experiences with disease progression or symptom recurrence makes members anxious. HeC members can get anxious for many different reasons. In ACOR groups, most members want as much information as they can get. But some 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, “listening and being there for them.” They 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.

[edit] When members appear to be severely depressed or in crisis

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. 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. 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.” The listowner and other members will try to comfort and reassure them that they can handle the situation.

HeCs vary in the ways members address 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 members do not suggest it, listowners are likely to. In POS, members share their own experiences, pro and con, but do not make recommendations. They encourage their distressed fellow list members to contact a doctor or therapist.

[edit] Dealing with dying, death, and bereavement

HeC members' degree of concern over issues of death and bereavement depends on the purpose of the community. In HeCs for people with non-life threatening ailments, this concern is unlikely to much discussed. For cancer, the degree of lethality depends on the type of cancer, so it is not surprising that ACOR listowners on different lists report wide differences how often members post messages about impending loss of loved ones and their impending bereavement. In addition, some listowners encourage such sharing more than others. As one listowner 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."

ACOR Listowners report that, in such cases, they or list members offer information about support resources for dealing with end-of-life issues. Listowners try to tailor their suggestions to members’ individual needs. If a member wants in-person support, listowners or list members will suggest the types of local agencies that could provide those services. They may also suggest websites and other resources for. For those who want their support via email, there is another ACOR list, “Facing Ahead,” which was organized for those who wanted to talk about the dying process. Members are also encouraged to bring in hospice care. When members’ deaths are announced, members often respond with condolences and share recollections of how the deceased member’s messages helped them personally or were valuable to the group as a whole.

POS offers a dramatic contrast to the cancer/physical illness HeCs because that e-community was organized specifically to provide support for parents who are both traumatized and bereaved. POS members cope by “focusing on surviving, not dying, but the reality is that we deal with dying sometimes too.” In families where one person commits suicide, there is a higher risk of other relatives taking their own lives, too. There are examples of members who had several children or other family members die in quick succession; some of these deaths occurred after they joined POS. Sometimes, active members commit suicide. When deaths do occur, members are very active in offering support and comfort, posting messages to the group and privately. Some members send cards or gifts privately to the bereaved member’s family. While POS discourages members asking for donations, a few exceptions have been made when members of the group have lost other children subsequent to joining the group. POS members use rituals to commemorate the lives of members who die. Members light real and "virtual" candles in their memory. [For an example of websites hosting commemorative virtual candlesm see http://helpinghearts.homestead.com/[1]. Those who knew the deceased member post their recollections about him or her so that members who were unacquainted with them would know some details about their lives.

[edit] When listowners get very sick or die

When HeCs are organized for people with life threatening conditions--and listowners are themselves survivors--the entire community may have to weather the extended illness or debilitation and eventual death of a member of the listowner team. In our interviews with ACOR listowners [2]. Several reported that they had had health problems which limited how active they could be on their lists. Others on their teams compensated. “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!” said one listowner. If the deceased listowner has not been very active as a an facilitator and the listowner team is functioning well, list members may not be unaware of that he or she is no longer playing that role if they were not personally acquainted.

When a listowner dies, list members and other listowners cope with these losses in different ways. For example, the community may decide to establish a memorial website. When the founder of one ACOR HeC 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 teamates. On several lists, widows of the deceased listowners have commemorated their husbands’ lives by taking their places on the team.