How Patients Contribute to an Online Psychoeducation Forum for Bipolar Disorder: A Virtual Participant Observation Study

Abstract

Background In a recent exploratory randomized controlled trial, an online psychoeducation intervention for bipolar disorder has been found to be feasible and acceptable to patients and may positively impact on their self-management behaviors and quality of life. Objective The objective of the study was to investigate how these patients contribute to an online forum for bipolar disorder and the issues relevant for them. Methods Participants in the intervention arm of the Bipolar Interactive PsychoEDucation (“BIPED”) trial were invited to contribute to the Beating Bipolar forum alongside receiving interactive online psychoeducation modules. Within this virtual participant observation study, forum posts were analyzed using thematic analysis, incorporating aspects of discourse analysis. Results The key themes which arose from the forum posts included: medication, employment, stigma, social support, coping strategies, insight and acceptance, the life chart, and negative experiences of health care. Participants frequently provided personal narratives relating to their history of bipolar disorder, life experiences, and backgrounds, which often contained emotive language and humor. They regularly sought and offered advice, and expressed encouragement and empathy. The forum would have benefitted from more users to offer a greater support network with more diverse views and experiences. Conclusions Online forums are inexpensive to provide and may offer peer support and the opportunity for patients to share their experiences and explore issues related to their illness anonymously. Future research should focus on how to enhance patient engagement with online health care forums. Trial Registration ISRCTN81375447; http://www.isrctn.com/ISRCTN81375447 (Archived by WebCite at http://www.webcitation.org/6YzWtHUqu).