An Exploration of Helping Processes in an Online Self-Help Group Focusing on Issues of Disability

The number of U.S. citizens with temporary or lifetime disabilities constitutes a large segment of the population. It is estimated that there are as many as 24 million people with a severe disabling condition (International Center for Disability Information, 1999), including 7,500 people with spinal chord injuries per year, 750,000 people with cerebral palsy, 200,000 with muscular dystrophy, and more than 5 million with severe arthritis. Nationally, there are an estimated 1.7 million people with disabilities who are homebound and an additional 12.5 million who are temporarily homebound. There also are many caretakers of disabled and elderly people who are essentially homebound as a result of their responsibilities at home. In addition to the physical and emotional difficulties directly associated with disability, a number of social and emotional difficulties result from being alienated or "socially quarantined" from the larger society: depression, loneliness, alienation, lack of social interaction, lack of information, and lack of access to employment (Braithwaite, 1996; Coleman, 1997; Shworles, 1983). Online groups - self-help and mutual aid groups - found on Internet newsgroups, commercial information networks, and computer bulletin boards are potential resources to this large population because they combine the advantages of self-help and the accessibility of computer networks. Given the limited number of trained leaders and the relative scarcity of services, online groups could provide an important adjunct to in-person services as part of a wait-list condition, as a source of concurrent support, and as follow-up to time-limited groups (Finn, 1995). Although the existence of online groups has been documented, there are very limited research and anecdotal reports about the types of help offered or the content of the information shared among members. Self-Help and Mutual Aid Groups Self-help groups have been described as an essential human resource and a permanent social utility (Katz, 1992). The groups are an attempt by people with a mutual problem to take control over circumstances that affect their lives. In general, self-help groups are based on principles of empowerment, inclusion, nonhierarchical decision making, shared responsibility, and a holistic approach to people's cultural, economic, and social needs. Their values include cooperative self-organization, nonbureaucratic mutual helping methods, social support, and free services (Schopler & Galinsky, 1993; Segal, Silverman, & Ternkin, 1993). It has been estimated that there are 400 distinct types of self-help groups, comprising 500,000 groups in the United States, attended by more than 15 million people. The number of groups has quadrupled in past the 15 years. (Boreman, Brock, Hess, & Pasquale, 1982; Kessler, Mickelson, & Zhao, 1997; Leechsen, Lewis, Pomer, Davenport, & Nelson, 1990). The health care arena has seen exponential growth in self-help groups since the early 1980s. Group membership includes people and their families suffering from chronic disease, people requiring long-term rehabilitation, people experiencing terminal illness and bereavement, and people recovering from addiction. Factors that have promoted the development of self-help groups include insufficient health care resources for some populations, rising cost of health care, lack of support within the medical system for chronic conditions, growing distrust of medical professionals, increased interest in alternative medicine, a new emphasis on prevention, and a rise in consumer consciousness (Riessman & Carroll, 1995). The research evidence points to the positive outcomes of self-help participation (Ayers, 1989; Furlong, 1989; Gottlieb, 1982; Gottlieb, 1985; Kyrouz & Humphreys, 1998; Lipson, 1982; Yalom, 1985). A considerable amount of research has been undertaken in defining the kind of help that self-help groups can provide and the theoretical reasons for their success. …