Membership of a patients' association and well-being. A study into the relationship between membership of a patients' association, fellow-patient contact, information received, and psychosocial well-being of people with a neuromuscular disease.

Abstract

This article presents the results of a study into the relationship between membership of a patients' association, information received, fellow-patient contact and psychosocial well-being. Data were collected from a group of people with myotonic dystrophy and spinal muscular atrophy (n = 349). About 60% of this group are members of a patients' association for people with a neuromuscular disease. No direct relationship was found between membership of the patients' association and well-being. Membership, however, was positively related to the number of fellow-patients with whom one has had personal contact and also to the amount of information received about the disease and related factors. Having personal contact with more fellow-patients was related to a better well-being in the group of patients who had a relatively low level of physical functioning. There were no indications that receiving information leads to better well-being. The results of this study indicate that membership of a patients' association, through promoting fellow-patients contacts, can be beneficial to people with a chronic disease, especially to people who are relatively severely ill.