Coping and self-help group membership in Parkinson's disease: an exploratory qualitative study

The present small-scale, exploratory, qualitative study was conducted to investigate how Parkinson's disease, a chronic progressive illness, had affected the lives of eight participants. It also explored whether self-help group membership was related to coping methods (four of the participants were members of the Parkinson's Disease Society and four were not). Semi-structured interviews were conducted and thematic analysis was used to identify and group themes which emerged from the participants' discourse. It was found that all participants had experienced losses of physical and mental functioning and independence, self-identity and future, and were afraid of further losses. Although all participants used a range of coping methods, it was found that there were differences between members and non-members in the prominence of certain methods and overall coping style. For non-members, coping centred upon maintaining a normal life and denying the condition a central role, but for group members, the disease and its likely consequences were accepted and incorporated into everyday life. The discourse of non-members contained many references to a self-help group as a source of distress, while discourse of members identified it as a supportive resource. This exploratory study enhances our understanding of differences between people in their willingness to use a self-help group, and in turn, raises questions about the provision of psychological services in a chronic progressive illness.