The Lived Experience of Parkinson's Disease: A Content Analysis of Parkinson's Patients' Blogs.

BACKGROUND: Blogs have become a major venue of information sharing and emotional release for people worldwide. Illness blogs are a specific type of blog in which patients describe their experience with illness and coping with disease. Illness blog research has been conducted on several disorders; however, blogs by Parkinson's disease (PD) patients have been neglected.

OBJECTIVES: To categorize the characteristics of PD patients from blogs and explore whether we can learn about the medical issues with which they are most concerned, as conveyed through their blog posts.

METHODS: Using located PD patients' blogs, we analyzed the contents of 78 blogs, and employed thematic analysis of eight arbitrarily selected blogs.

RESULTS: The majority of blog authors in our sample (N=78) were from the United States (42%). The number of blogs written by male and female authors was fairly similar: 49% and 44%, respectively, while gender was unknown for 7%. Blogs were written by both early- and late-onset PD patients. The thematic analysis revealed five major themes: diagnosis, symptoms, treatment, coping mechanisms, and information.

CONCLUSIONS: Thematic analysis of blogs by PD patients provided considerable information and insight regarding the experience of these patients, which is significant to other patients and their families, as well as to medical professionals. Further qualitative studies of larger blog samples utilizing data mining techniques are needed to further explore the subjective experiences of patients.