The role of self-help groups in chronic illness management: A qualitative study

Abstract

Self-help groups offer a unique form of support based on mutual understanding and the experiential knowledge of members. They constitute a potentially valuable resource for assisting people to manage chronic illness and its impacts. We conducted in-depth interviews with 15 members and the leaders of five chronic illness-related self-help groups in Newcastle, New South Wales. The focus was on small, voluntary groups with little or no external funding; agencies that are often overlooked in terms of their contribution to the health care system. Those interviewed readily identified benefits relating to quality of life, illness management, and interactions with health care professionals. Increased emotional and social support, access to an expanded information base, a better understanding of their illness, and a greater sense of confidence and control in relation to it seemed to enhance the capacity of members to engage in active self-management of their conditions. Along with such benefits, group leaders also highlighted some of the challenges faced by volunteers who run these agencies. Self-help groups are effective structures that can serve as an adjunct to clinical care and provide tangible benefits to their members. Further investigation and better recognition of these groups is warranted given their potential to assist those with chronic illness and to contribute to national policy objectives for chronic disease management such as those identified in the Sharing Health Care Initiative.