A thematic analysis of patient communication in Parkinson’s disease online support group discussion forums

Online support groups have become a popular source of information, advice and support for individuals living with a range of health conditions. However, research has not commonly focused on patients living with Parkinson’s disease and their use of online support groups. Thus, the aim of this study was to gain an insight into the positive and negative aspects of online communication through an analysis of messages exchanged within Parkinson’s disease discussion forums. Data was collected from four forums and analysed using data-driven thematic analysis. The results revealed that participation in the forums allowed patients to share experiences and knowledge, form friendships, as well as helping them cope with the challenges of living with Parkinson’s disease. Conversely, a lack of replies, the experience of Parkinson’s disease symptoms, a lack of personal information, fragility of online relationships, misunderstandings and disagreements, all appeared to compromise the online experience. Practical implications and future research recommendations are proposed.

► We explore the online experiences of individuals living with Parkinson’s disease.
► We thematically analyse messages on the forums of four online support groups.
► Both positive and negative features of online support are experienced by members.
► Online forum support may complement traditional forms of support.