'From victim to agent': the clinical and social significance of self-help group participation for people with life-threatening diseases

AIM: The main objective of the paper is to discuss the ways in which self-help groups can be useful to persons with life-threatening diseases like cancer or human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS). The paper offers an outline of the central characteristics of self-help groups, highlighted by the participants themselves. BACKGROUND: Self-help groups are a growing phenomenon across national borders. New empirical sociological studies show that nurses have become important agents in self-help groups, both within and outside the public health-care system. However, research on self-help groups is a relatively new area within nursing studies yet it serves an important function in shedding light on a rather unique form of social practice organized and managed partly by the participants themselves. METHODS: Qualitative interviews designed to examine how participants evaluate their experiences with self-help groups. The study includes 53 self-help group participants suffering from cancer or HIV/AIDS. Findings: Contact with other people, forming of friendships, new networks and increased self-confidence are some of the effects indicated by the participants. Participation in a self-help group has a positive impact on the patients' ability to cope with the psychological and social consequences of living with a life-threatening disease. CONCLUSIONS: It is evident that the positive effects of self-help groups are mainly because of their inherent capacity for universalizing personal problems, which, in itself, legitimizes the scientific relevance of self-help groups. There is no evidence to indicate that self-help groups have a positive influence on the life expectancy of participants who suffer from cancer or HIV/AIDS, but it should be noted that this is not the explicit concern when groups are formed. By their very existence self-help groups indicate the need for a reevaluation of the scope and focus of the individualized care and nursing. The clinical and social significance of self-help group participation has not been sufficiently accounted for.