“It Makes People Uneasy,but It's Necessary. #BTSM”: Using Twitter to Explore Advance Care Planning among Brain Tumor Stakeholders

Abstract

Background:

Advance care planning (ACP) often occurs too late in the disease course of those who are affected by brain tumors. Furthermore, the perspectives of brain tumor stakeholders on ACP are not well described. We reviewed a social media tweet chat to understand barriers to ACP experienced by brain tumor stakeholders.

Methods:

We used qualitative methods to analyze a tweet chat (real-time virtual discussion) of brain tumor stakeholders. The one-hour tweet chat was hosted by Brain Tumor Social Media chat (@BTSMchat), a patient-run Twitter community, in January 2018. Participants reflected on four questions about ACP by including the hashtag “#BTSM” in tweets. Unique tweets and stakeholder type (i.e., patient, caregiver, advocate or organization member, clinician or researcher, or @BTSMchat leader) were coded. The tweet chat was qualitatively analyzed to identify key themes.

Results:

A total of 52 participants from four countries contributed 336 tweets. Most participants were patients (people with brain tumors), followed by clinicians or researchers, and advocates or organizations. Three key themes emerged regarding brain tumor stakeholder perspectives about ACP: (1) attitudinal barriers prevent discussions of death; (2) need to ensure one's voice is heard; and (3) Goldilock's approach to timing—fearing ACP is too early or too late.

Conclusions:

Various stakeholders, including people with brain tumors, shared perspectives on ACP through a tweet chat and highlighted important challenges and opportunities. Twitter is a new avenue for patients, clinicians, and advocates to engage with each other to better understand each other's perspectives related to ACP.