The diagnosis of a ruptured or unruptured brain aneurysm has a significant impact on patients’ quality of life and their psychosocial wellbeing. As a result, patients and caregivers may resort to social media platforms for support and education. Accordingly, the aim of the present study is to assess the landscape of social media in the context of brain aneurysms and subarachnoid hemorrhage (SAH)
Three social media platforms (Facebook, Twitter and YouTube) were assessed for public content pertaining to brain aneurysms in March 2016. We conducted a mixed-method analysis that includes a descriptive examination of cross-sectional data and a qualitative evaluation of online communications for thematic analysis. We assessed categorized data using non-parametric tests for statistical significance.
Our analyses revealed that Facebook was the most highly utilized social media platform with 11 relevant pages and 83 groups. Facebook accounts were all non-profit foundations or patient support groups. The majority of users in Facebook groups were joining private support groups as opposed to public (p<0.05). The most frequently viewed category of YouTube videos was on treatment procedures (p<0.001). Six prominent themes emerged from the coded data of posts and comments: Inspiration and motivation (27.7%), providing and sharing information (26.3%), requesting information (14.4%), seeking emotional support (12.1%), admiration (8.3%) and loss and grief (8.3%).
Care and support providers must recognize that patients with brain aneurysms and their caregivers seek privacy in online communications for social support, use the term "brain" more commonly across social media platforms, interested in the details of aneurysm securing methods, and frequently express the significant impact of SAH on their quality of life and psychosocial wellbeing. These findings are important for shaping future online interventions for support and education in stroke and SAH.
We believe this work presents novel observational data that, to our knowledge, has not been previously studied in brain aneurysms or stroke. Our analysis provides several important findings for the treating physicians and care providers regarding social media users in the domain of brain aneurysms. These findings are important for shaping future online interventions for support and education in stroke and SAH.
By the conclusion of this session, participants should be able to recognize the importance of social media communications as a potential data source in stroke and SAH
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