'What else can I do?': Insights from atrial fibrillation patient communication online.

Abstract

Many patients with atrial fibrillation experience uncertainty and psychological distress. Internet support groups for atrial fibrillation have yet to be studied. To determine the content and dialogue on an online message board for atrial fibrillation with the purpose of elucidating information and support needs from patient perspectives. Interpretative description methodology was undertaken to explore conversation from a publicly available website for atrial fibrillation over a 3-month period. Individuals interacted with the message board to make sense of their atrial fibrillation events by sharing experiences with medications, complementary and alternative medicine, trigger avoidance and ablation. The opinions of lay experts on the message board, anecdotal stories and hyperlinked Internet data were all highly valued sources of information in the messages. Using the learning gained from the board, individuals proceeded with strategies to treat their atrial fibrillation, often in a trial and error fashion. Throughout the process, individuals came back to the board, to update on their progress and gain assistance from others. The studied atrial fibrillation population had unmet needs for education regarding non-pharmacological approaches to treat atrial fibrillation. In the absence of opportunity to discuss these needs with healthcare professionals, patients may be vulnerable to unproved approaches advocated by Internet peers. Further research is suggested to examine the prevalence of complementary and alternative medicine use in the atrial fibrillation population and to understand better how social media can be utilised to support atrial fibrillation patients.