Parkinson's disease: Content analysis of patient online discussion forums. A prospective observational study using Netnography

Objectives: To assess the users' characteristics, discussion contents, and the atmosphere of virtual peer communities.

Methods: A qualitative, prospective study was conducted using the Netnography method. The most popular, publicly accessible French discussion forums were investigated. The web users' quotes were collected from May to October 2018. Data analysis triangulation was performed by two researchers using the NVivo 12® software.

Results: The users discussed their experience with Parkinson's disease (PD) in a warm atmosphere. 23 discussion threads were analysed: 302 messages posted by 70 users (70% were females; the average illness duration was 6 years); 115 encoded nodes were created. Five user profiles appeared: leader, follower, expert, mixed, and undetermined. Common preoccupations were a lack of time and listening from the physicians' side. Three themes emerged: managing symptoms, living with PD, and sharing illness experiences. Users sought actively for a cure to limit or stop disease evolution, using alternative and complementary therapies to optimize their daily condition.

Conclusions: Online forums foster person's informal learnings about coping with PD. Healthcare professionals can use these learnings to optimize person-centred support.

Practice implications: During consultations, healthcare professionals should invite persons to discuss their online activity, informal learnings, beliefs and expectations towards therapeutic strategies.