CHARACTERISTICS OF POLIO SURVIVOR SELF-HELP ORGANIZATIONS

Abstract

While polio has been largely eliminated from the developed world, millions of survivors suffer not only the direct effects of this disease but many face new obstacles 20 to 40 years after “recovering” from the initial viral infection. With few of today’s doctors familiar with how polio affects the body, survivors have created self-help groups for social support and to disseminate the most recent information on what is commonly referred to as “post polio syndrome” or “post polio sequelae.” Post polio groups differ from other health focused groups like cancer and obesity, in that they do not have a new pool of potential members from which they can recruit. However, our survey of 83 polio self-help groups finds several similarities in organizational goals, structure, and services to other types of self-help organizations. The groups’ focus was primarily on providing members with health related information and social support. Leaders tended to be well educated professional females. Many post polio self-help groups had alliances with other polio groups and with medical clinics and hospitals. Polio reached epidemic proportions in the United States in the 1940s and early 1950s (Neus, 1999). Since then, however, in a review of major diseases, McKinlay and McKinlay (1990) reported polio to be one of the few diseases to have declined due to direct medical intervention. Indeed, Salk and Sabin were hailed as heroes for their work on polio vaccines. In the late 1980s work began to eradicate polio from the earth. Polio has been absent in the United States since 1979, from the