Aditi Ratnam, MA
Brain tumor patients’ use of social media for disease management: Current practices and implications for the future.
Published on: February 07, 2023
Original author: McAlpine H, Sejka M, Drummond KJ. (2020) (DOI: 10.1016/j.pec.2020.07.012)
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: 1. Do brain tumor patients use social media for information, communication, interaction, or problem-solving related to their brain tumor? 2. Does social media use for these purposes suggest recommendations for the design of social media platforms customized for brain tumor patients? 3. Does social media use for these purposes improve HRQoL? 4. 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.
How mental health care should change as a consequence of the COVID-19 pandemic?
Published on: January 10, 2023
Original author: Moreno C, Wykes T, et al. (2020) (DOI: 10.1016/S2215-0366(20)30307-2)
As the world went from having the busiest streets to empty ones, lives were changed all around in 2020. The coronavirus or Covid-19 more formally known as SARS-CoV-2 was first discovered in Wuhan, China in December 2019. Shortly after it was declared an epidemic in many countries and a global pandemic by March 2020. The global population was too busy to notice that the lives they lived were too fast-paced and when the government put containment measures like lockdowns and curfews, the world stopped for a few months. While people lost jobs, contracted the virus, saw loved ones pass away, etc, the sheer fear of the unknown created ample space for mental health issues. The pandemic and its lockdown along with physical distancing led to a social void in many lives. The researchers call the coronavirus a neurotropic disease, signifying that the virus tended to attack one’s nervous system preferentially. The hard times faced by people were noticed across the globe by each country which pushed an international group of mental health experts to discuss and plan treatments and better methods of mental healthcare for the future. The first step toward a conclusion was to sieve the problems that were faced by different groups of people. They were categorized as: the general public, people who had/have Covid-19, people with pre-existing mental health conditions, and most importantly, healthcare workers. Some major problems dealt with by these groups were depression, anxiety, and the worsening of pre-existing mental health disorders such as OCD symptoms and PTSD (post-traumatic stress disorder). The researchers also discussed the services that were already being provided during the pandemic. Mental healthcare was not new but it was yet to completely settle down in a fast-paced society like ours. Services tried to adapt to new environments and upgraded their methods of treatment as well. Experts came up with sustainable adaptations of mental health delivery which included everything from inclusion and remote therapy to newer and more efficient methods of treatment. Researchers also came up with blueprints for mental healthcare in collaboration with clinical treatment in communities. As the world braces itself for another possible wave of Covid-19 in 2023, mental healthcare systems have grown a lot in the last 2.5 years. From, free healthcare to reassuring content online, the world has come a long way. We have grown to understand not only each other but ourselves better in the years spent social distancing. Old methods of mental healthcare should be refined and renewed and innovations for new systems should continue. After years of stigma, mental health is finally a topic all generations now understand. The pandemic, as tragic as it was, did bring the world together, somehow.
YouTube as a Source of Information for Neurosurgery.
Published on: November 01, 2022
Original author: Samuel N, Alotaibi NM, Lozano AM. (2017) (DOI: 10.1016/j.wneu.2017.05.111)
Social Media is an important part of our daily lives; statistically, it has been so for the last two centuries. We have evolved from the invention of the telegraph in 1844 (where messages were transmitted physically through a wire) to scrolling and double tapping on hand-sized metal slabs in 2022. Yes, social media has more than evolved; it has grown, upgraded, and has become an element of society that society cannot function without. Of course, there are ups and downs, as well as pros and cons to every aspect of social media however, the feature that will be discussed today will be examined from the standpoint of healthcare and a positive perspective. A video-sharing platform that has boomed and flourished in the last decade; a ‘social media,’ which has kept everyone’s attention rapt with its adaptability and global appeal- YouTube. As mentioned, it is a video-sharing platform nevertheless, I would like to take the liberty of naming it a search engine in connection with today’s paper by Nardin Samuel et al- YouTube as a Source of Information for Neurosurgery. Neurosurgery, known to lay people as brain surgery is the medical specialty concerned with the surgical treatment of various disorders that affects any part of the brain, the peripheral nervous system, and the spinal cord. Neurosurgery is also one of the leading healthcare topics discussed worldwide today and YouTube bridges the gap between healthcare professionals and patients with its fast-paced on-the-go information. To name a few, the American Association of Neurological Surgeons and the Journal of Neurosurgery Publishing Group are among the top organizations that use online videos as instruments to broadcast surgical information and education and consequently enhance learning. Of course, when one combines the giant online engine that is YouTube with a massive field like health care, we get a huge output of videos to analyze. A systematic analysis of this content (that has not been researched before), needs to be performed to understand what are the characteristics of the videos that attract neurosurgeons, academicians, and patients so that one can harness social media and use it more effectively. Methodology The video categorization and analysis were divided into the following steps: 1. First, a comprehensive search was performed with the terms- neurosurgery, neurological surgery, brain surgery, or spine surgery. Data that was collected pertained to the following metrics- date of upload, number of likes, dislikes, comments, shares, and country or region of upload or origin. 2. Secondly, these descriptive statistics were calculated and it was found that the results were not normally distributed as one was dealing with social media here. Hence, the metrics were reported using medians and IQR values through which results were produced using Excel. 3. Thirdly, using methodologies of qualitative data analysis like axial coding and open coding the videos were classified. 4. Lastly, ethical considerations were maintained by the authors as only videos that were available to the public on the platform (YouTube) were taken into the study. Results A net of 713 videos (after the removal of duplicates) formed the basis of the study. These 713 videos, were divided into systematic categories such as educational videos, promotional videos, patient experience, surgical procedures and overviews; others and irrelevant to clinical neurosurgery. Conclusion As online communications continue to evolve and upgrade, we find platforms like YouTube becoming a major source of information. However, by taking content related to healthcare and especially neurosurgery, the authors aimed to assess how much of this information is reliable and accurate. By monitoring, measuring, and analyzing the content that is uploaded and absorbed by the users, we can harness this tool to consequently improve patient-oriented communication and circulate knowledge related to neurosurgery effectively and efficiently.
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