Benefits of self-help groups: A survey of 232 members from 65 disease-related groups

This paper gives a report on the benefits of self-help groups as depicted by 232 members from 65 different disease-related groups. Intensive interviews and participant observation enabled us to formulate a questionnaire with 125 mostly standardized questions. The questions referred mainly to motives for membership, working procedures within the groups, goals and effectiveness, outcome of participation and need for outside support. The focus of this paper will be on what the members reported about the changes and effects induced by their participation in self-help groups. The interviewed group members reported a wide variety of goals. These were classified into two categories according to their range. Goals directed towards the group or group members were achieved (at least partly) by more than 90%. Goals directed towards persons outside the group (e.g. to change opinions of the family or of the professional system) were mentioned by about two thirds of the interviewed members. About three quarters of them achieved these goals at least partly. The effects of participation were grouped into the following categories. 1--Impact on disease-related stress (positive health effects, general enlargement of competence, general social activation); 2--impact on the relationship with family and friends (relationship with partner, changes in personal network); 3--impact on patient behaviour and professional services (general enlargement of competence in relation to the professional care system, social activation in relation to the professional care system, utilization of professional services). Most of the members reported considerable positive changes in these dimensions. Negative impacts were mentioned by a very small minority (between 1 and 4%). The state of research on the benefits of self-help groups is still rather unsatisfactory. There is, however, enough evidence to draw two conclusions concerning policy: 1--Self- help groups cannot replace professional services. 2--Self-help groups should get public support because they have an important function for people suffering from chronic diseases or other problems.