Organizational characteristics and Issues affecting the longevity of self-help groups for parents of children with special needs

In this article, the organizational characteristics and issues affecting the maintenance of nine self-help groups for parents of children with special needs are discussed. Qualitative data were collected through interviews with 20 parents and observation of six group meetings. For continued existence, groups must deal with the challenges of encouraging new leaders, attracting new members, obtaining funds or assistance to support their activities, and meet-ing the changing needs of members. Important organizational characteristics associated with longevity are committed and effective leadership, community connections that help provide needed funds or practical assistance, and the willingness of group members to change activities to meet changing needs. This information can be used by parents and service providers to plan new groups, recruit group members, and ensure the effective func-tioning of groups as they change over time. Seven percent of children younger than 15 years of age have a disability that lim-its their daily activities (Statistics Canada, 1992). Parents often join a self-help group to help them deal with the day-to-day issues that arise in parenting a child with special needs. The growth in self-help groups is a powerful trend in our society today. In 1987, approximately 2 % of the Canadian population (420,000 individuals) belonged to self-help groups (Gottlieb & Peters, 1991), and in 1996, approximately 10 million Americans participated in self-help groups (Kessler, Mickelson, & Zhoa, 1997). It is estimated that approximately 25 million Americans have belonged to such groups at some point in their lives (Kessler et al., 1997). 225 AUTHORS ’ NOTE: The authors are indebted to the members of the parent support groups who took part in this study. Their openness and candor helped the authors to gain a true sense of the experience of being part of a support group. The authors would also like to thank Linda Terry and June Chiu for thei