Search Results
Searches retrieved 1714 items following deduplication, of which 1687 titles and abstracts were eliminated, leaving 94 full-text articles to be considered. Of those, 28 were not eligible because they did not fit our definition of social media, 18 did not fit our definition of CAM, 7 did not focus on how social media is used in the context of CAM, 6 were an abstract, and 6 were a review. This left 29 articles for inclusion in this scoping review [30–58]. In Figure 1, a PRISMA diagram can be found.
Eligible Article Characteristics
Eligible articles were published from 2012 to 2020 and were conducted by researchers from the United States (n=17), Canada (n=4), Australia (n=2), France (n=1), Germany (n=1), Spain (n=1), and Taiwan (n=1). Additionally, one study was conducted by researchers from China, Australia, and the United Kingdom (n=1), and another study was conducted by researchers from Iraq and Jordan (n=1). Of these 29 eligible articles, 10 focused on a study population from a single country, meaning that only social media content posted by users from a specified country was included in the study. These countries included the United States (n=5), Australia (n=1), Germany (n=1), Iraq (n=1), Spain (n=1), and Taiwan (n=1). The remaining 19 eligible articles focused on social media content from more than one country, 13 of which focusing on an international sample of social media content (i.e., all of Twitter). While a diverse array of CAM was explored, the most common were yoga (n=4), medicinal marijuana (n=4), dance therapy (n=2), music therapy (n=2), and spinal manipulation (n=2). The most commonly discussed social media platforms were Twitter (n=6), Facebook (n=5), and YouTube (n=4). The articles used a variety of qualitative and mixed methods in their social media research approaches. Of the 29 eligible articles, 24 were described generically as qualitative without naming a specific design or were described in terms of data collection techniques (e.g., focus group and interview) or analytic techniques (e.g., content analysis and discourse analysis). Of the remaining 5 eligible articles, two were identified by the authors as following a case study design, one was identified as following quantitative approaches, and two were identified as mixed methods studies based on its methodology and the presence of a combination of qualitative and quantitative approaches. The details associated with all eligible article characteristics, including study aims, can be found in Table 2; the main findings, challenges encountered, and conclusions of all eligible studies can be found in Table 3. No studies reported any secondary outcomes.
Findings from Thematic Analysis
Four main themes were identified through our thematic analysis. These themes are described in the paragraphs below.
Theme 1: To Share User/Practitioner Beliefs, Attitudes, and Experiences about CAM
Several studies provided insight into the beliefs, attitudes, and experiences of CAM users and practitioners [35, 36, 38, 40, 41, 43, 45, 48, 49, 53, 55]. Three subthemes developed among the studies: negative beliefs and attitudes about CAM use, positive beliefs and attitudes about CAM use, and experiences of using CAM.
Subtheme 1.1: Negative Beliefs and Attitudes about CAM Use
The first of the three subthemes found among the studies was negative beliefs and attitudes about CAM use. Numerous studies identified negative beliefs and attitudes about CAM treatments that were posted on social media [38, 40, 49, 53]. One study conducted in Spain analyzed the discourse of skeptics of complementary therapies on Twitter [38]. The authors reviewed more than 6000 posted tweets and found that 79.1% were against or not in favour of CAM treatments. The common themes among the tweets were “anti-science”, “fighting against harmful, for-profit practices”, and protecting “the most vulnerable [who have] little knowledge of science”. Another study investigated social media as a platform to share information about the safety of Chinese patent medicine [40]. The authors found that there were a significant number of posts to online blogging platforms about individuals experiencing adverse effects while undergoing Chinese patent medicine. In addition, a study investigated the presence of critiques and debates surrounding the effectiveness and risk of chiropractic and spinal manipulation therapy (SMT) on Twitter [53]. It was found that the efficacy of these CAM treatments was rarely questioned or doubted. Additionally, the potential risks were rarely mentioned or debated. However, of the few tweets that were skeptical or critical about the use of chiropractic and SMT, most had been liked and retweeted significantly, demonstrating that many skeptical or critical perspectives of CAM use had an impact on social media users even though their voices were marginal in number.
Subtheme 1.2: Positive Beliefs and Attitudes about CAM Use
Three studies intended to analyze the public beliefs and attitudes expressed about CAM use on social media and assess whether they were predominantly in favour of or against CAM use [35, 48, 55]. One study analyzed descriptions of CAM treatments used by young women diagnosed with cancer who kept an online cancer blog [55]. The descriptions of CAM treatments were uniformly expressed in a positive and empowering manner by the young women. Additionally, two studies assessed how cannabidiol (CBD) products were presented on popular social media platforms, including Twitter and Pinterest [35, 48]. Both studies found that the majority of posts presented CBD in a positive light, with many citing physical or mental benefits, such as relief from anxiety, depression, pain, and inflammation. Similarly, a study investigating posts on Instagram related to yoga found that most posts emphasized the physical benefits of yoga and used words like “fitness” when describing yoga [41]. Another study that focused on cannabis-related conversations on Twitter discovered that the topics of conversation ranged from using cannabis for the first time to the legality and therapeutic value of cannabis [36]. Regarding the therapeutic value, posts discussed numerous medical conditions such as Crohn’s disease, cancer, post-traumatic stress disorder, anxiety, and depression that are being treated or have the potential to be treated by cannabis.
Subtheme 1.3: Experiences of Using CAM
Four studies found that the information most sought by consumers on social media sites was relating to the experiences of past users of CAM treatments [43, 45, 49, 55]. For example, one study analyzed questions posted on Yahoo! Answers relating to dietary supplement ingredients under subsection, “Alternative medicine” under the section, “Health” [45]. It was found that the information most sought by consumers, defined by the greatest number of posts, was relating to the uses and adverse effects of dietary supplements. The most common uses of the dietary supplements were respiratory, thoracic & mediastinal disorders, cardiovascular & lymphatic system disorders, and psychiatric disorders, while the most common adverse effects were diarrhea, abdominal pain, palpitations, and headaches. Another study examined descriptions of CAM use among women diagnosed with cancer who maintained an online cancer blog [55]. The study found that the women used CAM treatments for a multitude of reasons, including the feeling of a loss of control, negative symptom experiences, as a means of reconnection to their bodies, and as a result of the desire to have a more active engagement in their care. A different study analyzed posts on Instagram related to KandyPens, an e-cigarette company that markets its products as aromatherapy devices [43]. The most predominant themes displayed in the posts were user experience and product appearance. Additionally, one study found that individuals had both negative and positive experiences with a popular CAM treatment, chiropractic [49]. The study explored debates surrounding chiropractic in the comment section of popular chiropractic-related videos on YouTube. The comments section was split between individuals with negative and positive beliefs, attitudes, or experiences regarding chiropractic. On the negative side, individuals tended to argue that chiropractic was not supported by sufficient evidence or “science”. While on the positive side, individuals usually alluded to personal experiences and raised issues with conventional medicine and the pharmaceutical industry.
Theme 2: Misinformation about CAM on Social Media
Numerous studies discussed how social media acts as a vehicle for the spread of misinformation about CAM [34, 35, 42, 47, 48, 53]. For example, since the onset of the COVID-19 pandemic, the amount and popularity of tweets suggesting a link between spinal manipulation therapy (SMT) and immunity increased substantially [34]. Furthermore, posts about CAM on breast cancer patient social forums and Facebook groups have raised critical concerns about the reliability of information accessible to patients [42]. For example, it was found that some patients test CAM therapies that have not yet been proven or whose manufacturing quality have not been verified [42]. Additionally, information that is potentially dangerous can be shared on social media and avoid review from regulatory and monitoring systems [42]. However, a study also found that features of social media posts and their comments can impact how credible social media users deem them to be [33]. Thus, not all information about CAM on social media, whether it be factual or inaccurate, may be equally trusted by social media users. For example, for naturopathic physicians, citing research articles in their blogs has been suggested as a valuable tool to build credibility both for them individually and for their discipline as whole [57]. Additionally, a study found that if comments criticize researchers’ intentions rather than their expertise, they are more likely to effectively reduce perceived credibility of social media posts about homeopathy [33]. Various studies found that there is a lack of credible voices represented in social media posts about CAM [35, 47, 53]. For example, out of the 100 most widely viewed YouTube videos on cupping therapy, only 16 were created by qualified professionals [47]. Studies also stated that the high prevalence of misinformation about CAM on social media can help policymakers better understand and devise strategies to mitigate it, and raises questions about regulatory authorities’ role in labelling, approval, and surveillance [34, 42].
Theme 3: Challenges with Social Media Research in the Context of CAM
More than a third of studies identified challenges with social media research in the context of CAM [31, 34–36, 40, 42, 45, 47, 48, 50, 55, 57]. There were three subthemes that emerged across these studies, each representing a specific challenge with performing high-quality social media research in the context of CAM including: the inherent sampling biases, the privacy standards of social media platforms, and the difficulty identifying posts that represent the actual attitudes of the public. These subthemes highlight the difficulty in collecting a representative sample in social media research in the context of CAM. Although studies utilized different definitions of CAM and surveyed distinct CAM treatments on social media, all made specific determinations as to where to draw their search criteria [31, 34–36, 40, 42, 45, 47, 48, 50, 55, 57]. Studies with a narrow search criterion within a subset of CAM did not necessarily have a small sample size, therefore having a narrow search criterion was not viewed as a challenge with social media research in the context of CAM.
Subtheme 3.1: Sampling Biases are Inherent
More than a third of studies reported that a challenge with social media research in the context of CAM was that sampling biases are inherent and surveying a representative sample is difficult [31, 34, 36, 40, 45, 47, 48, 50, 55, 57]. Studies that analyzed activity on Facebook or Twitter mentioned that they may have missed potential participants that were not Facebook/Twitter users, had private accounts, or did not have access to the internet [31, 34, 36, 48]. Studies that utilized qualitative methodology to analyze activity on online blogs recognized that their data lacked generalizability beyond the experiences presented [50, 55]. Additionally, since the participants in these studies were only accessed through online blogs, identity was not captured. Thus, no medical condition or treatment-related details could be confirmed by medical record. Additionally, various studies focused on posts from a single social media platform (i.e. Twitter) and acknowledged that their findings may not extend to other social media platforms [31, 34, 36, 55, 57]. On the other hand, some studies only collected data on a single CAM treatment (i.e. chiropractic), and thus recognized that its findings may not extend to other CAM treatments on social media [40, 45]. Two studies also acknowledged that the views of social media users who posted in languages other than English were not captured [47, 50].
Subtheme 3.2: Privacy Standards of Social Media Platforms
Furthermore, some studies mentioned that the reason there are challenges with social media research is because of the rigid privacy restrictions that prevent collecting detailed demographic information about users who were exposed to or interacted with a post on social media, but chose not to respond [31, 35, 42]. Three studies, which explored either Facebook and Pinterest, discussed this challenge in their research [31, 35, 42]. For example, a study analyzed the use of Facebook to recruit a target group of people to a survey on a CAM product [31]. The study discussed its recruitment method, which was primarily through Facebook advertisements, and the challenge of having a limited ability to assess the magnitude of any differential response bias because so little is known about nonrespondents (i.e., those who viewed the study recruitment advertisement, but did not click on it). Similarly, another study discussed the difficulty with conducting social media research because social media platforms like Pinterest do not share demographic information, the time of activity, or the extent to which users act upon the items they pin [35].
Subtheme 3.3: Challenges with Identifying Posts that Represent the Actual Attitudes of the Public
Some studies described that one of the challenges of working with social media data was identifying posts that represent the actual attitudes of the public [47, 48]. One study analyzed the public attitudes on medicinal marijuana use for PTSD on Twitter [48]. The study reported that over 10% of all marijuana-related tweets were posted by the top 10 most popular cannabis-related Twitter accounts. This suggests that some of the tweets included in the study may have been sent through power users or Twitter bots [48, 59]. One study analyzed user-generated content found on YouTube on the practice of cupping therapy as a form of pain management [47]. The authors focused the study on the 100 most widely viewed English-language YouTube videos on cupping and noted that the results may not be generalizable to the less popular YouTube videos.
Theme 4: Studies Measuring the Efficacy of Social Media as a Platform for Delivering CAM Related Therapy or Information
There were a variety of studies that measured the efficacy of social media as a tool for delivering CAM related therapy and information [39, 44, 51, 52, 54, 56]. Despite technology related challenges, such as technical issues when delivering dance therapy over Skype or Fuze, delivering CAM therapy over social media was found to be feasible, cost-effective and a viable future option [52, 56]. Additionally, using social media to deliver CAM therapy and information is accessible and is an especially good alternative when time is limited or when patients find it difficult to travel to receive services [39, 51, 54]. Moreover, social media has shown to be effective at both delivering information about CAM as well as CAM therapies [39, 54]. For example, when gut-focused hypnotherapy was delivered over Skype to patients with irritable bowel syndrome (IBS), a clinically significant amount of research participants (65%) experienced a reduction in their IBS Severity Scoring System (SSS) score [39]. Additionally, primary care providers’ understanding of neonatal intensive care unit (NICU) music therapy services, as well as knowledge of new research findings critical to the success of music therapy in the NICU, was increased through blogs [54]. Studies also suggested that more trials, and large non-inferiority randomized control trials (RCTs) in particular, are required to fully determine whether social media is just as effective for delivering CAM therapies as face-to-face treatment [39, 56]. However, a study also noted that for hypnotherapy used to treat irritable bowel syndrome (IBS), as hypnotherapy is not very invasive and IBS is a fairly serious condition, it would be inappropriate to wait for the results of RCTs to deliver this CAM therapy over social media for patients with IBS as preliminary findings have shown it is highly effective in this population [39].