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

`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.