Online support groups are expanding as the general public becomes more comfortable using computer-mediated communication technology. These support groups have certain benefits for users who may not be able to or do not have the desire to attend face-to-face sessions. Online support groups also present challenges when compared to traditional face-to-face group communication. Communication difficulties may arise resulting from lack of visual and aural cues found in traditional face-to-face communication. Online support groups have emerged within health care as a result of the need individuals have to know more about health conditions they are confronting. The proliferation of these online communities may provide an opportunity for health educators to reach target populations with specific messages. This paper reviews the development of health-related online support groups, examines research conducted within these communities, compares their utility with traditional support groups and discusses the implications of these groups for health education.
Social support groups provide mutual aid and self-help for people facing chronic disease, life-threatening illness and dependency issues (Cline, 1999). The literature indicates such groups exist for diseases such as Alzheimer's disease, ankylosing spondylosis, breast cancer, brain cancer, prostate cancer and epilepsy (Gross and Brandt, 1981; Drodge et al., 1986; Goodman, 1991; Leavitt et al., 1996; Samarel et al., 1998; Weber et al., 2000). Negative results from support groups have been reported (Galinsky and Schopler, 1994). However, benefits that accrue from use of social support groups include enhanced quality of life, improved decision making and increased survival time (Spiegel et al., 1989; Spiegal, 1994; Cline, 1999). Braithwaite et al. state that social support groups offer a holistic and cooperative approach to meeting cultural and social needs, resulting in a sense of empowerment (Braithwaite et al., 1999).
While much work has been done to understand the nature of social support groups, very little is known about the emerging phenomenon of online social support. Online social support most frequently takes the form of a listserv or mailing list whereby members communicate with each other around a specific health-related topic. The ubiquitous use of personal computers coupled with ease of access to the Internet has proliferated computer-mediated communication. Much debate revolves around the status of virtual groups and whether they can be defined as `communities', with the concomitant requirements of reciprocity, interpersonal responsibility and common obligation (Postman, 1993; Rheingold, 1993; Turkle, 1996; Mitra, 1997; Schmitz, 1997; Sharf, 1997; Watson, 1997; Miller and Gergen, 1998; Burrows et al., 2000). While online communities do not share a physical space, they do share common interests and experiences. Rheingold in one of the earliest discourses on virtual groups [(Rheingold, 1993), p. 6], defined online communities as:
...social aggregations that emerge from the Net when enough people carry on those public discussions long enough, with sufficient human feeling, to form webs of personal relationships in cyberspace.
In an early study that looked at issues raised by computer-mediated communication, Kiesler et al. noted possibilities of developing computer networks into social support networks (Kiesler et al., 1984).
Benefits of online support
There are many benefits associated with online support groups (Finn, 1995, 1999; Madara, 1997). With asynchronous communication, participants in online groups have access 24 h a day, 7 days a week, at times most convenient to them. Asynchronicity allows individuals to carefully develop responses at their own speed. Geographic and transportation barriers are absent. People with mobility problems, speech and hearing difficulties or caregiving responsibilities can participate with ease.
In particular, people with stigmatizing disorders like AIDS or breast cancer, or persons recovering from sexual abuse may find online support a more welcoming venue to discuss sensitive issues. The anonymity provided by online groups allows discussion of potentially embarrassing topics or otherwise taboo subjects, increases the possibilities for self-disclosure, and encourages honesty and intimacy (Ferguson, 1997; Galinsky et al., 1997; Madara, 1997; Klemm and Nolan, 1998). The visible effects of treatments like chemotherapy and late stages of disfiguring diseases are avoided (Finfgeld, 2000b).
In addition, sociodemographic factors such as age, gender, racial or ethnic identity, income and social status are not readily obvious (Rheingold, 1993; Kiesler et al., 1984; Finn, 1995; Madara, 1997). Weight, disability and other signs of physical appearance as well as social skills and vocal characteristics also are eliminated (Davison et al., 2000). For those with uncommon diseases, online groups may provide the only way to communicate with others who are dealing with similar problems. Sometimes, distress that accompanies learning of a diagnosis can decrease motivation to attend face-to-face groups. The physical demands of treatment for particular diseases may cause debilitating side effects and make attendance at a traditional group unlikely. The convenience and accessibility of online support may have strong appeal to these individuals (Fernsler and Manchester, 1997).
Online support can be a useful adjunct to more traditional support groups (Finn, 1995). Illness may preclude attendance at a face-to-face group on occasion. During these times, online support can be beneficial. For those who require a great deal of support, online groups can provide supplemental help between meetings of traditional groups.
Unlike traditional support groups, bounded by space constraints, the number of participants in an online group can be unlimited. On the Internet, coverage spans the globe. This international scope permits group members to draw from a wide variety of perspectives, experiences, disabilities and points of view, while at the same time promoting a feeling of universality (Finn, 1995, 1999; Winzelberg, 1997; Braithewaite et al., 1999).
Online support groups empower consumers by serving in an advocacy capacity, means of organizing and networking politically for a particular cause or disease. Such groups may champion concerns and priorities to local, state, national and international organizations (Feenberg et al., 1996).
Disadvantages of online support
Online groups have disadvantages, too. Although computer-mediated communication is a cost-effective way to send messages to many people simultaneously, the individual who joins an online group must have access to a computer and to the Internet. This eliminates much of the world's population from participating (Madara, 1997; Braithwaite et al., 1999). In the US, shared Internet access is available from most public libraries (American Library Association, 1998), allowing those without computers at home (or even a home address) to have E-mail accounts and join online groups. However, the `digital divide' still separates the information poor—particularly the poor, women, minorities and older people—from those who can afford to pay (Galinsky et al., 1997; Madara, 1997). In addition, individuals must be able to read, write, and have a rudimentary knowledge of how to use a keyboard and computer (Klemm et al., 1998b; Dickerson et al., 2000).
While online groups theoretically can involve participants from all over the world, thus enhancing group cultural and social perspectives, very active forums often produce a large volume of postings. Reading each message may require a serious time commitment on the part of members (Sharf, 1997; Shaw et al., 2000).
Online messages may be easily misinterpreted upon being read. Absence of visual and aural cues can be a disadvantage. To overcome lack of facial expressions, touch, vocal tone and inflection, eye contact, and body language, many online support group members use a paralanguage composed of brackets, embedded text, capitalization, emoticons and acronyms (Galinsky et al., 1997; Finfgeld, 2000b; White and Dorman, 2000).
Issues of group process may be a concern. Lack of visual, aural and contextual cues contribute to the relative impersonal nature of online communication (Parks and Floyd, 1996). Many online groups are unmoderated and open to everyone, allowing less inhibited members, covered by the cloak of anonymity, to `flame' or harass other members, disrupt or intentionally deceive the group (Kiesler et al., 1984; Galinsky et al., 1997; Winzelberg, 1997; Feldman, et al., 1998; Finn, 1999; Burrows et al., 2000).
Since health care professionals do not facilitate most publicly accessible online groups, opportunities exist for the appearance of inaccurate, dangerous or mistaken medical information (Winzelberg, 1997; Dickerson et al., 2000). While other members may correct erroneous information, all members may not read the corrections in a timely manner. For example, Culver et al. examined 1658 messages sent to an electronic bulletin board for people with painful hand and arm conditions (Culver et al., 1997). They studied author qualifications, message purpose, message content, the nature of the medical advice and expressions of dissatisfaction with the health system. Results illustrate the preponderance of messages on medical topics were from people without medical training. In addition, over one-third suggested use of unconventional treatments.
Computer-based groups also may be addictive, especially in instances where one `substitutes life on the screen for life in our bodies and physical communities' [(Turkle, 1996), p. 57]. If online relationships replace real-life social interactions, a decline in quality of life may result (Burrows et al., 2000).
Disease representation online
Some diseases such as cancer and HIV/AIDS are well represented among online groups while others like heart disease and stroke are noticeably missing (Ferguson, 1997). Why some disorders gather a large online following while others do not is not yet fully understood. Some have suggested that diseases with few treatment options and unclear etiology are more likely to search for help online (Culver et al., 1997; Ferguson, 1997; Davison et al., 2000). Davison et al. examined support group participation, both face-to-face and online, by type of illness and personality type (Davison et al., 2000). Their study encompassed a review of support group participation for 20 diseases in four US metropolitan areas, as well as online participation over a period of 2 weeks for the same diseases. Seeking support was closely related to interpersonal consequences of the disease. For conditions which may be considered embarrassing, stigmatizing or disfiguring, they found support groups, in all venues, proliferated. These diseases were often poorly understood and overlooked, especially by the medical community. Among the 20 diseases they studied, chronic fatigue syndrome, multiple sclerosis, breast cancer, diabetes and depression comprised the largest number of groups, while chronic pain, emphysema and migraine had the lowest number.
Comprehensive online support services
Comprehensive computer support programs (Finfgeld, 2000b) feature an assortment of options, including online encyclopedias, decision-support systems, question and answer capabilities, behavior modification aids, as well as communication modules which provide some form of online discussion group. The features of the various services are available only to members of the study. Of the several major comprehensive computer networks, five stand out.
An early study by Schneider and Tooley illustrated the benefits of a behavioral intervention for a smoking cessation program utilizing an electronic bulletin board as one of its components (Schneider and Tooley, 1986). Many of the members successfully quit smoking, but the lack of a control group made interpretation of the outcomes questionable. This was remedied several years later, when Schneider et al. compared two behavioral smoking cessation programs (Schneider et al., 1990). One consisted of behavioral interventions alone while the other incorporated a discussion group (the Stop Smoking Forum) into the treatment plan. Participants who were allowed use of the Forum in addition to the behavioral intervention were most successful in ending cigarette use.
Alzheimer's Disease Support Center (ADSC)
Another early prototype of computer-mediated support was designed to meet the needs of caregivers of dementia patients in the Cleveland area (Smyth and Harris, 1993). The ADSC contains five modules, including an introductory section, a Question and Answer area, an Information Rack with an electronic library of materials, and several Bulletin Board forums, including one specifically for caregivers.
Comprehensive Health Enhancement Support System (CHESS)
Developed by researchers at the University of Wisconsin, CHESS is an interactive disease-specific program with three major components, each with a number of subcomponents (Bosworth and Gustafson, 1991; Owens and Robbins, 1996). The Information segment includes a Question and Answer section, Instant Library, Ask the Expert dialogue, and a resource section entitled Getting Help/Support. The Social Support segment contains a Discussion Group, with a trained facilitator, and a Personal Stories section where users can read vignettes about experiences of people with the particular disorder. The Problem Solving segment includes a Decision and Conflicts section, an Action Plan, and a Health Charts section.
The primary focus of CHESS has focused on women with breast cancer and people with HIV/AIDS. Several randomized controlled studies conducted with breast cancer patients found women used the Discussion Group (an online support forum) extensively (Gustafson et al., 1993; McTavish et al., 1995; Rolnick et al., 1999; Shaw et al., 2000). Lack of computer experience was not found to be a barrier. After 1 h of training, women of all educational backgrounds, with or without prior computer knowledge, were able to use the program with ease (Owens and Robbins, 1996).
Other CHESS studies examined age, education and minority status as factors in the use of the program. Although their sample was small, McTavish et al. found eight impoverished minority women from the Chicago area used CHESS extensively for support, motivation and relief (McTavish et al., 1995). In another study, women over 60 years of age, with no college education, were found to use CHESS as often as younger women (Gustafson et al., 1993). Topics most often discussed revolved around perceptions of personal health care experiences, treatments and their side effects, fears of recurrence, and coping strategies. Members also appreciated the anonymity provided by the computer, stating they felt `safe' using the Discussion Group. Overall, participants found CHESS to be empowering and validating.
In a more recent study, Shaw et al. interviewed 12 CHESS breast cancer users and learned that talking with others who were experiencing similar struggles not only provided emotional support and encouragement for the users, but also enabled them to take on the role of helper (Shaw et al., 2000). The asynchronous nature perplexed some users who wanted to receive answers to their postings immediately, but many participants appreciated the time to think about their responses (Shaw et al., 2000).
In all of the CHESS studies, many participants made extensive use of the 24-h availability format, with 34–40% of all use occurring during evening and night-time hours (Gustafson et al., 1993; Boberg et al., 1995).
Additional studies examine the use of CHESS with AIDS and HIV-positive persons. In one randomized controlled study of 116 people (96 male and 20 female) living with AIDS/HIV infection, users accessed CHESS almost 16 000 times over a period of from 3 to 6 months. Information and support sections were used most heavily. Women, including six minority women, used the system as heavily as men did (Boberg et al., 1995).
A more recent randomized controlled study looked at the impact of CHESS on the health outcomes and quality of life of 204 HIV-positive persons (Gustafson et al., 1999). Researchers found the CHESS group experienced fewer and shorter hospitalizations, and spent less time at physician appointments because they felt better prepared and had more realistic expectations. Telephone calls to health care providers increased because CHESS participants felt empowered to raise issues of concern as they arose. Researchers also discovered positive effects on outcomes disappeared if the CHESS system was not in place for a minimum of 5 months.
ComputerLink is an electronic network designed to give comprehensive social support and assistance to homebound individuals with complex medical disorders like AIDS and Alzheimer's disease, and their caregivers (Brennan, 1996). Like CHESS, it consists of a multilayer design, with several components. The Communications module is made up of a bulletin board (the Forum), an electronic mail section, and a Question and Answer area. The Decision Support module allows users to formulate decision strategies based on their own value system. The Information module contains an electronic encyclopedia with factual data about several diseases, caregiving problems, and resources (Ripich et al., 1992).
In a pilot project examining use of ComputerLink by persons with AIDS, Brennan et al. found a small sample of 19 persons living with AIDS used ComputerLink primarily to maintain social contact with other users and to obtain self-care information (Brennan et al., 1991b). A later study with 26 participants found persons with AIDS used the Communications segment most often, with more than 4000 accesses and 749 messages posted to the Forum over a period of 26 weeks (Brennan and Ripich, 1994). In this study, participants used the private E-mail function more than any other. Brennan and Ripich also noted anonymity and the ability to observe or lurk was welcome by study members who expressed concern about stigma and embarrassment (Brennan and Ripich, 1994).
In two separate field experiments involving 57 persons with AIDS and 102 caregivers of patients with Alzheimer's disease, respectively, Brennan found all of the study participants used the Communications module more often than any other (Brennan, 1996). However, caregivers tended to use the support group forum most, while persons with AIDS used private E-mail more frequently. Brennan also remarked that, while some members took a very active role in using numerous sections of the system, others participated more passively by reading messages (lurking) and looking up information.
Another study examining use of ComputerLink by caregivers of Alzheimer patients found the Communications module was most popular (Brennan et al., 1991a). The average age of the 22 caregivers in this study was 68 years. After a training period of approximately 1.5 h, older adults with little prior computer experience were able to participate successfully in the network. This lends credibility to the assertion that older adults can be taught to use computers.
A larger sample of 47 Alzheimer caregivers was studied for 1 week to assess their use of ComputerLink options (Brennan et al., 1992). Caregivers made extensive use of the interactive Communications segment, particularly the Forum, logging on at all hours of the day and night, but especially during hours of early morning and late evening, a time when other resources were unlikely to be available and patients were likely asleep. In this sample, caregivers received three kinds of psychosocial support—informational, emotional and spiritual (Gallienne et al., 1993).
Other ComputerLink studies found similar results. A 1-year randomized controlled study of 102 caregivers of Alzheimer's patients found ComputerLink access was highest in the Forum section of the Communications segment, with caregivers giving and seeking information, support and encouragement (Ripich et al., 1992; Brennan et al., 1995; Brennan, 1996). ComputerLink was frequently utilized as an adjunct to traditional sources of social support, depending upon the needs of the caregiver (McClendon et al., 1998).
Although technical and administrative programming questions remain to be worked out, both CHESS and ComputerLink offer promise for wider dissemination through interactive cable television or the Internet.
REACH for TLC
Fashioned after ComputerLink, REACH for TLC (Telephone Linked Care) is a system designed to provide an automated support system for caregivers of Alzheimer's disease patients using touch-tone telephones. Components of the REACH for TLC system include several modules, including an Ask-the-Expert component with personal mailbox, a voice mail bulletin board that functions as a support group, a distraction module to reduce disruptive patient behavior and a technical helpline. A randomized controlled trial is currently underway. Because it uses a familiar piece of equipment that most people already own and know how to use, REACH for TLC has several psychological and economic advantages.
Single function interactive online support groups
Computer-mediated comprehensive systems like CHESS, REACH for TLC and ComputerLink are available only to persons taking part in the research studies. Members of the public, unless enlisted as study participants, are not allowed to utilize these systems. Most computer-mediated groups have support as their sole function, without an array of extended features. These single function groups may be private forums created for a particular purpose, including research, or they may be online forums, open to all interested parties.
Private single function forums
Private bulletin boards, chat rooms and mailgroups can be established on the Internet, private college or university servers, or commercial online providers. These groups limit their members to a select group of people, often affiliated by disease, situation, geography or convenience.
HIGHnet (Hemophiliacs In Good Health Network) is an example of a private electronic bulletin board created by researchers at Ohio State University to meet the specific information needs of people with hemophilia who live in the state of Ohio (Scheerhorn et al., 1995). In Ohio, many hemophiliacs live in isolated rural areas and find it difficult to keep in contact with others who have the disease. Fifty-eight hemophiliacs, ranging in age from 7 to 71 years, participated in a study in which Scheerhorn and colleagues examined 2259 postings to the forum over a period of 18 weeks. They concluded use of HIGHnet contributed to increased solidarity, and improved mental and physical well-being within the hemophiliac extended community. In addition, HIGHnet assisted with advocacy efforts and provided several economic benefits that ultimately resulted in cost savings for expensive medications.
Wellesley College, a private women's college in Massachusetts, utilized the college's electronic bulletin board system to create a forum for students to discuss topics related to body image and eating disorders (Gleason, 1995). The forum became a popular venue for social support. However, because students could not post anonymously but had to sign on using their real names, concerns arose over issues of privacy and confidentiality.
Cleveland State University conducted a quasi-experimental controlled study of a voice bulletin board (Talknet) versus face-to-face group meetings for pregnant drug abusers (Alemi et al., 1996). The 28 women in the experimental group used the electronic bulletin board more frequently than the 25 controls used traditional support meetings. Bulletin board users found increased emotional support, a sense of solidarity and decreased the number of visits to outpatient clinics while using Talknet.
In Great Britain, the non-profit organization the Samaritans initiated operation of an E-mail program, similar to its telephone assistance program, to help persons with mental health concerns (Spinney, 1995). A majority of the E-mails received involved depression and suicidal thoughts, primarily from a population of young males, 18–24 years of age. This population is least likely to attend face-to-face support groups or even admit to experiencing personal difficulties.
Weinberg et al. studied an electronic bulletin board established expressly for six breast cancer patients (Weinberg et al., 1996). Members were selected from the practice of one of the authors, a practicing oncologist. The small size of this private forum is comparable to the size of many face-to-face groups. During the 3-month period under study, participants used the forum 158 times, sharing medical and personal information and providing encouragement and support primarily from 7 a.m. to midnight.
Young wives who become widows often feel isolated and depressed. To remedy this situation, a bereaved nurse began a small private mailgroup for 24 widows between the ages of 31 and 50 (Bacon et al., 2000). Private weekly online chats were held in addition to the E-mail correspondence. A questionnaire was developed and sent to members to ascertain advantages and disadvantages of belonging to the group. The authors found primary benefits included decreased isolation, opportunities to share experiences with others in similar circumstances, emotional support and coping strategies, and provision of information. Members liked the convenience of online support, but mentioned the lack of physical touch, chance for misunderstandings to arise and the overwhelming volume of E-mail as negative aspects of the group.
Public single function forums
Public online groups that revolve around a single disease or condition are common entities on the Internet. Miller and Gergen looked at content of an American Online forum on suicide (Miller and Gergen, 1998). After an 11-month study of 232 postings to the bulletin board, the authors discerned 20% of postings concerned personal experience and self-disclosure, followed by 18% offering encouragement and empathic understanding. The forum was compared to a friendly neighborhood, with transactions sustaining rather than transforming. As an adjunct to the study, the researchers asked for volunteers to take part in a qualitative analysis of the forum. Members noted the ready availability of empathetic people, the ability to take on the role of `responsible helper' by offering assistance and advice, and the therapeutic value of writing about one's feelings and problems.
In a public newsgroup for depression, researchers examined the group's gender composition, organizational features and interpersonal relationships that developed, and compared them to traditional face-to-face groups (Salem et al., 1997). After examining 1863 messages from 533 participants (273 males and 173 females) over a period of two randomly selected weeks, the authors found a high percentage of males used the group, and message content was similar for both males and females. Self-disclosure postings were most frequent (51%). Offers of instrumental help were rare and some friendships that began online were pursued through other channels such as private E-mail. No formal leader facilitated interactions in the group, but several members assumed this role informally by welcoming new members, offering humorous asides and assisting members with administrative type functions.
Reeves investigated the impact of the Internet (Reeves, 2000), including its online support features, on 10 HIV-positive persons (six males and four females). Extensive 1.5–2-h interviews revealed respondents felt the Internet empowered them, proffered (or supplemented existing) social support and enabled them to take on a satisfying helper role. The small size of this well-educated, articulate sample may make findings difficult to generalize to other HIV-positive individuals.
Several researchers have studied online groups dealing with disabilities. Finn examined 718 messages over a 3-month period from an online bulletin board (Finn, 1999). He divided the postings into two realms:
Socioemotional messages [including expression of feelings, provision of support, casual conversation (chit chat), universality, friendship, extra-group relationships, private (taboo) topics, poetry and art, and hostile (damaging statements].
Task-oriented messages (encompassing asking for or providing information, problem solving, computer talk or group cohesion).
He found over 50% of postings concerned socioemotional exchanges. Subjects mostly discussed health and interpersonal relationships, followed by legal and political issues.
Similarly, Braithwaite et al. examined 1 month's messages (1179 postings) to a disability bulletin board (Braithwaite et al., 1999). They found the most frequent category of posting concerned emotional support (40%), followed by information (31.7%), esteem support (18.6%), networking (7.1%) and tangible assistance (2.7%). This study described several unique features of online support. Members occasionally contributed poetry, journal entries, personal stories or artwork, often as a form of emotional support to other members. The anonymity provided by the computer may lead to an increased comfort level for sharing various forms of self-expression. Humor was used as a means of conveying support or lightening the conversational tone. Many messages contained signature lines, a form of writing unique to computer-mediated communication, which frequently contained favorite quotations or axioms meant to convey support and humor.
In an article examining the emergence of social policy issues related to computer-mediated support, Burrows et al. described several newsgroups in the `uk.*' hierarchy, including one devoted to disability issues. Participants discussed a wide range of topics, from society's attitudes toward people with disabilities to straightforward requests for information. While most exchanges were positive and beneficial, the authors gave several examples of flaming, an aspect they called `dis-empowering' [(Burrows et al., 2000), p. 109].
Feenberg et al. examined two online groups providing support to patients with amyotrophic lateral sclerosis (ALS) and their caregivers (Feenberg et al., 1996). ALS Digest, an Internet journal with 800 subscribers, includes an E-mail forum as part of its weekly format. The unmoderated ALS discussion group provides social support and information. While researchers expressed concern about the potential for dissemination of inaccurate information and faddish treatments, they were reassured by the self-correcting mechanism inherent in many online support groups. They also noted frank discussions on such sensitive topics as sexuality as well as the advocacy role taken on by the groups.
Winzelberg systematically analyzed the content of 3 month's postings sent to an eating disorders online support group (Winzelberg, 1997). Of 306 messages, 31% concerned self-disclosure, 23% involved information requests and 16% provided emotional support. The majority of the 70 participants contributed only one to two messages, while seven members were prolific, sending over 10 messages each. Winzelberg found over 10% of the information was not medically sound, and occasionally consisted of commercial interests recommending expensive and ineffectual treatments. As noted in other online groups, other members usually corrected misinformation. However, corrections often appeared only after a time delay, occasionally as long as 1–2 weeks. Two-thirds of messages were sent during evening and early morning hours, times when access to professional assistance usually was not available. High usage during non-business hours corroborates findings of other researchers (Brennan et al., 1992; Gustafson et al., 1993; Boberg et al., 1995; Weinberg et al., 1996).
Traditional support groups have been an integral aspect of treatment for patients with cancer (Spiegel et al., 1989; Cella and Yellen, 1993). Online groups for cancer proliferate as well (Klemm et al., 1999a). Fernsler and Manchester invited the 1400 members of the CompuServe cancer forum to complete an E-mail questionnaire on the utility of the online forum to members (Fernsler and Manchester, 1997). Comments from the 54 respondents were primarily positive. Over 85% of the members stated contact with others who have undergone similar experiences was the most beneficial aspect of the forum. Seven themes emerged from survey responses: coping, information, reciprocal support, a sense of community, privacy, availability and hope.
In an in-depth analysis of an unmoderated breast cancer mailgroup, Sharf found information requests and responses the most common interaction on the list, followed by psychological and emotional support, exchange of personal experiences, and humor (Sharf, 1997). The group has over 825 members, with 25% males. Composition includes patients, family, friends, researchers and health care providers. Topics discussed include medical and surgical treatments, side effects, news items about breast cancer, client–provider relationships, and advocacy issues.
Klemm et al. studied postings from an online support mailgroup for colorectal cancer patients and their families (Klemm et al., 1999b). After analyzing 150 messages from one 4-day period and 150 messages from one 5-day period 6 months later, the authors found postings could be categorized into eight groups: information giving and seeking (25.4% of the interactions), personal opinions (22%), encouragement and support (17.4%), personal experience (16.4%), thanks (7.7%), humor (4.5%), prayer (2.9%), and miscellaneous (3.2%). Surprisingly, issues related to sexuality did not arise.
Another study reported on gender differences in three online cancer groups—a general group open to anyone with cancer (49 female and 43 male), a breast cancer group (126 female and 15 male) and a prostate cancer group (117 male and 18 female) (Klemm et al., 1999a). The eight-category typology of Klemm et al. mentioned previously was used (Klemm et al., 1999b). However, an advocacy category for the prostate cancer group was added. Results suggest men and women are likely to use online support differently. Men used the groups to gather or give information, while women were more likely to give encouragement and support. Again, sexuality issues were absent from all three groups.
White and Dorman examined 532 messages sent over a period of 20 days to a public mailgroup for Alzheimer's disease caregivers (White and Dorman, 2000). Using the categories developed by Klemm et al. (Klemm et al., 1999b), the researchers found almost 30% of postings concerned information giving and seeking, while personal experiences accounted for nearly 25%. Encouragement and support followed with 14.3%, personal opinions with 11%, humor 7.8%, thanks 5.9%, prayer 2.8% and miscellaneous 3.6%. While the online group had over 1015 members enrolled, only 178 member posted messages during the study period. Caregivers frequently expressed appreciation for the opportunity to vent feelings of anger, frustration or helplessness to understanding `listeners'. Because concerns could be raised as soon as problems arose, the strain of continuous caregiving could be alleviated.
In a content analysis of 469 postings conducted over a 15-month period of an electronic bulletin board for patients with implantable cardioverter defibrillators (ICD), several major themes emerged (Dickerson et al., 2000). Seeking and giving meaningful information, sharing personal perspectives, storytelling as common grounding (personal experiences), and supportive interacting (feedback and support) comprised a `therapeutic connection' provided by the online support group.
A final example of research involving online support concerns the Moderation Management (MM) mailgroup (Finfgeld, 2000a). MM is a new self-help alcohol management technique that targets moderate alcohol drinkers to manage their drinking rather than abstain completely. The mailgroup is composed of approximately 270 subscribers, two-thirds of whom are female. Finfgeld examined characteristics of the MM process from messages over a 74-day period. This process involved cocooning (turning inward to face personal responsibility for one's drinking) and vigilance (identifying personal drinking triggers). Members of the mailgroup shared personal experiences and contributed hints on controlling their drinking. Despite the emphasis on drinking habits, Finfgeld determined the group functioned as a community where many kinds of support were offered. The MM mailgroup recently received some unwelcome publicity when one of its members confessed drinking too much, setting fire to his house and killing his child as a result (Martinez, 1998).
Comparing face-to-face and online support
While face-to-face and online groups provide support, encouragement and information to their members, a number of distinct differences have emerged. Some of the obvious differences have already been mentioned. Time, space and geographic boundaries restrict face-to-face groups. Membership in online groups, on the other hand, may be unlimited and not contained by international boundaries. Availability 24 h a day, 7 days a week makes online support convenient and accessible at user discretion. White and Dorman found that caregivers of Alzheimer patients welcomed the ability to write about problems as caregiving responsibilities and the advent of crises allowed (White and Dorman, 2000). Asynchronicity of online communication allows members to think carefully and deliberately before sending messages or responding to postings
Gender differences exist as well. Research suggests that men use computer-mediated support more frequently than they use face-to-face support groups (Salem et al., 1997; Klemm et al., 1998). Comfort with using computer technology coupled with the anonymity that the computer provides may encourage men to participate online more freely, especially when talking about sensitive issues like depression or suicide (Spinney, 1995; Salem et al., 1997). Even so, some researchers have found the kinds of messages sent on online groups differ by gender. Men are twice as likely to give or ask for information related to a disorder while women use the group to share personal experiences and provide encouragement and support (Klemm et al., 1999a).
With an absence of sociodemographic or visual cues, online groups tend to be more egalitarian and less concerned with social status. Persons with disabilities or stigmatizing diseases can participate without concern they will be prejudged. On the other hand, this same lack of cues can lead to misunderstandings, especially when messages are misinterpreted or misread. Use of paralanguage and embedded words in text can help overcome textual limitations of computer communication. In some cases, members of online support groups will select additional channels of communication (Parks and Floyd, 1996). Private E-mail, snail mail, telephone conversations, private group chats or special outings are just several of the alternative methods used by participants (Kollock and Smith, 1996; Parks and Floyd 1996).
The phenomenon of `lurking' or reading messages in an online forum without actively sending any messages is unique to online groups (Brennan, 1996; Brennan and Ripich, 1994; Burrows et al., 2000; Klemm et al., 1998; White and Dorman, 2000). Face-to-face groups usually require some measure of reciprocity (Dickerson et al., 2000). Passive online members may select a low level of visibility and participation as their preferred method of functioning in any group situation, whether face-to-face or online (Brennan et al., 1992). Both Winzelberg and Finfgeld suggest that shy or reserved members may prefer to lurk until they understand the online group's norms and style (Winzelberg, 1997; Finfgeld, 2000b). Family, friends, health care professionals and caregivers can become members of online groups to gain understanding, insight and perspective on issues faced by people with a particular disorder or condition without disturbing group process (Lamberg, 1997; Finn, 1999; Braithwaite et al., 1999). Researchers have noted the invisible presence of hundreds, or perhaps thousands, of members who read but do not participate. To date this topic has not been studied in depth (King and Moreggi, 1998). Whether lurkers gain some intrinsic benefit from reading but not posting is a question for future research. Dickerson et al. found that occasionally persons who had been lurkers to an ICD group would write to say how valuable the group has been and would then retreat back to `lurkdom' (Dickerson et al., 2000).
Davison et al. found that face-to-face support groups tended to be associated with more costly diagnoses and expensive treatments, while online groups favored conditions that were poorly understood, difficult or impossible to cure, or were overlooked by traditional health care (Davison et al., 2000). Online groups often served to muster advocacy and political action to change the status quo.
While most online groups have no formal administrative structure, group agreement about guidelines and norms often prevail. Many groups have a Frequently Asked Questions file that new members can read. Some online mailgroups may have a moderator whose primary function is to make sure postings stay `on-topic' and do not stray too far from the purpose of the group. Leaders tend to emerge in online groups in similar fashion as in face-to-face groups (Salem et al., 1997). These self-appointed leaders welcome new members, explain rules and norms of the group, and answer administrative questions, usually with a self-effacing quality and a touch of humor.
In the content analyses of several online groups, researchers found that group members shared original poetry, drawings, journal entries and stories (Braithwaite et al., 1999; Finn, 1999). These avenues of self-expression can aid in recovery and promote self-esteem (Finn, 1999). Online groups offer members opportunity to present creative works of self-expression to an extensive audience with a minimum of embarrassment or self-consciousness (Braithwaite et al., 1999; Finn, 1995, 1999).
The therapeutic value of writing about one's thoughts and feelings may alleviate depression and loneliness, and reduce pain and stress (Smyth et al., 1999). Several studies on online groups have reported members feeling a sense of catharsis after sending messages to their respective groups (Miller and Gergen, 1998; Finn, 1999; White and Dorman, 2000). In this respect, online groups have a distinct advantage over traditional groups.
Occasionally, members of online forums intentionally deceive others to obtain sympathy and attention. Both Rheingold and Madara forewarned that such deception could occur in cyberspace, just as it might in face-to-face or telephone transactions (Rheingold, 1993; Madara, 1997). Online forums, however, offer a new venue for patients with factitious disorder or Munchausen by proxy. Feldman refers to this pretense as virtual factitious disorder, or Munchausen by Internet (Feldman, 2000). After experiencing this kind of deception, group members often feel shame, distrust and suspicion. Stories that are overly dramatic, inconsistent or contradictory may be clues to detecting virtual factitious disorder (Feldman et al., 1998; Feldman, 2000).
Implications for health education and health promotion
As previously noted, online support groups offer both advantages and disadvantages for those who wish to communicate with others about their health condition. Furthermore, there appear to be age, gender and perhaps personality differences among those who seek online support. Also, it has been observed that there is great variation in the availability of online support groups as determined by disease type and function of the organizing website. Finally, the accepted wisdom and research of how face-to-face support groups function may not hold true for computer-mediated communication of this type. These concerns present challenges for health professionals who desire to facilitate use of online support groups. Indeed, there are several implications for health education professionals as a result of proliferation of online support groups.
Reaching the difficult to reach
Online support groups have potential for reaching population groups which previously may have been unreached or difficult to reach by health education. For example, some studies are show that men may be more attracted to online groups than face-to-face groups. This may mean the ability to reach a group of individuals who would not have attended group events about a disease or condition.
Online support groups may provide a cost-effective means of providing support, encouragement and health information to a large number of people (Galinsky et al., 1997). By minimizing transportation expenses, need for a physical meeting space and reliance on professionals to facilitate groups, online support can provide continuously available health information and education at reasonable cost.
Several authors point to the revolution in consumer–provider relationships and the democratization of medical information (Feenberg et al., 1996; Ferguson, 1996, 1997; Burrows et al., 2000; White, 2000). According to Burrows et al., sharing and obtaining information obtained from online groups can be empowering (Burrows et al., 2000). This is a beneficial environment for health education messages, because there is a `health ready' audience. However, this does present the difficulty of dealing with inaccurate or inappropriate information shared by consumers.
Technology skills needed
Proliferation of online groups and the potential for their effectiveness to deliver health education impacts the need for health educators to have technology-related skills. These skills may involve abilities to configure lists and groups and techniques for online communication. As mentioned previously, online communication lacks the aural and visual cues. Consequently educators should be trained to develop effective online communication patterns. Professional development in health education should continue to expand technology proficiency of health education graduates in this area.
While online groups may be a venue for health education, there are no research studies that have examined this format for effectiveness and efficiency in delivery of the health education message. Indeed, there has been no research that has linked participation in online support with desired health outcomes. In addition, a definitive methodology for studying online groups is needed. Other possibilities for research include investigations into the phenomenon of lurking, the use of humor and its role in online groups, and the quality and character of health outcomes for online group members, both lurkers and active participants.
As individuals become more comfortable using computer-mediated communication technology, use of online support groups is likely to expand. While these support groups have benefits for certain users who may not be able to or have the desire to attend face-to-face sessions, they also present challenges when compared to traditional face-to-face group communication. The proliferation of these online communities will provide new challenges for health educators to tailor messages and utilize these forums for educational activities. Continued research is needed to further examine the role of the online support groups in increasing patient satisfaction, compliance with medical regimen, achievement of desired health outcomes and use of online support groups as an educational venue. In addition, further research is needed to understand the unique characteristics of those who seek online support and their perceived needs.