Brain tumor patients’ use of social media for disease management: Current practices and implications for the future
Original author: McAlpine H, Sejka M, Drummond KJ. (2020) (DOI: 10.1016/j.pec.2020.07.012)
Summary
Proofreading intern
February 07, 2023
Introduction
Brain tumor-related diseases are some of the longest and most painful ailments worldwide, and their symptoms lead to social and physical isolation. This study is based on the patients who were administered a questionnaire on an electronic tablet in the Outpatient Department at the Royal Melbourne Hospital, in Australia. The use of social media in the world is evolving as we speak hence, this study aims to assess the role of this very tool in the lives of patients with brain tumor-related diseases.
The questionnaire presented to 224 people was extensive and long, so of course there were many limitations including the fact that the sample size taken can only be termed a pilot study and was not addressing a specific portion of brain tumor-related diseases.
The research paper addressed the following questions and gaps in the literature:
-
Do brain tumor patients use social media for information, communication, interaction, or problem-solving related to their brain tumor?
-
Does social media use for these purposes suggest recommendations for the design of social media platforms customized for brain tumor patients?
-
Does social media use for these purposes improve HRQoL?
-
Does social media use for these purposes improve social functioning and activities of daily living?
Results
There were specific statistical results such as 249 patients were approached, and 201 agreed to participate. 49 patients declined for a variety of reasons, including poor health, disability, or stress, or on the advice of their family. A specific percentage was also divided among demographic and specific diseases. 84.5% of the participants used the internet and 70% of those looked up information about brain tumors. 90.5% of participants who used the internet also used smartphones and 86.8 % of this number were comfortable using it. Among the people who used the internet 70.6% of them used social media.
Almost all 10 social media listed were used by at least some participants for support, communication, problem-solving, and information and only these were included in the conclusion. SNS was most frequently used (33.1 %) followed by wikis (28.1 %), and blogs (14.0 %), with other platforms being used by <10 % of participants each. 73.6 % of participants who used social media, used at least one form of social media for self-management of their brain tumor.
The top 3 most common (among the participants) social media sites were taken and the participants were asked about the features they value for each platform, including areas of privacy, flexibility, value, contributions, and functions. SNS had 33.1 % of social media users, and 19.9 % of total participants; for sharing content, liking a post, and updating status and private messages. Wikis contained 28.1 % of social media users, and 16.9 % of total participants used it for self-management of problems regarding their brain tumors. Blogs 14.0 % of social media users, 8.4 % of total participants, used it for self-management of problems regarding brain tumors. The rest 33.8% used other forms of social media through video-sharing sites, discussion forums, photo-sharing websites, virtual environments, etc. Of the 201 initial participants, only 132 completed the optional FACT-Br questionnaire due to fatigue. Of those who completed the FACT-Br, 78 used social media for information, communication, or interaction about their brain tumor or problems related to their brain tumor and 54 were social media non-users.
The questionnaire included several questions related to participants’ perception of the benefit of social media on their social functioning and activities of daily living. A positive impact of daily SNS use was reported including taking in new information, enjoying life, and participating in social activities. Wiki users did not report any meaningful improvements. Blog users reported improvements relating to managing emotional burdens and anxiety related to their disease and taking in new information.
Conclusion
Widespread use of online networks and a small number of brain tumor-specific social media groups or communities tell us that patients were indeed turning to social media for support and information. The demographic data depicts that the population dealing with brain tumor-related diseases are geographically and socially isolated. Three of the most commonly used platforms: SNS, wiki, and blogs suggest that patients aimed to seek out both active communication and encyclopedic information along with anecdotal information. There were many suggestions and recommendations by the study population for further use of social media as well. This study also concluded that health-related social media use was insufficient to improve emotional well-being. It may be that the current study was underpowered to show a difference, or that no such difference in HRQoL results from social media engagement. It is also possible that unregulated platforms are not specific enough to the needs of brain tumor patients to elicit an objective difference in HRQoL
