Background: Many women with breast cancer document their experiences in YouTube vlogs, which may serve as peer-to-peer and community support.
Objective: This study aimed to determine (1) the forms of content about breast cancer that tend to be discussed in vlogs, (2) the reasons why women choose to vlog their breast cancer experiences, and (3) the potential for breast cancer vlogs to serve as an alternative or complement to peer-to-peer support as well as a site of digital community overall.
Methods: YouTube was searched in incognito mode in November 2023 using the search terms "breast cancer vlog." A maximum of 10 videos/creator were included based on viewership and date created. Video characteristics collected included title; length; number of views, likes, comments; and playlist inclusion. Videos were assessed for sponsorship; presence of explanation and discussion on breast cancer; type of content; and themes. Creator characteristics included age, location, and engagement approaches. Descriptive and content analyses were performed to analyze video content and potential areas where peer-to-peer support may be provided.
Results: Ninety vlogs by 13 creators were included, all from personal accounts. The mean (SD) video length, number of views, and number of comments were 21.4 (9.1) minutes, 266,780 (534,465), and 1485 (3422), respectively. Of the 90 videos, 35 (39%) included hashtags, and 11 (12%) included paid sponsorships. The most common filming location was the home (87/90; 97%), followed by the hospital (28/90; 31%) and car (19/90; 21%). Home vlogs were most often set in the living room (43/90; 44%), bedroom (32/90; 33%), or kitchen (20/90; 21%). Thirty-four of 60 videos (57%) included treatment visuals and physical findings. Creators addressed motivation for vlogging in 44/90 videos (49%); the two most common reasons were wanting to build a community and helping others. In 42/90 videos (47%), creators explicitly expressed emotion. Most common themes were treatment (77/90; 86%), mental health (73/90; 81%), adverse effects (65/90; 72%), appearance (57/90; 63%), and family relationships (33/90; 37%). Patient-directed advice was offered in 52/90 videos (58%), mostly on treatment-related issues. In 51/90 videos (57%), creators provided explicit treatment definitions. Chemotherapy was discussed in 63/90 videos (70%); surgery in 52/90 (58%), primarily mastectomy; radiation in 27/90 (30%); and general adverse effects in 64/90 (71%). Twenty-two of 90 videos (24%) were about a new diagnosis. When mentioned (40/90; 44%), the most common creator location was the United States. When mentioned (27/90; 30%), the most common age was 20-29 years.
Conclusions: The dedication to building community support by vlog creators, and the personal nature of their storytelling, may make vlogs a potential resource for peer-to-peer support.
Background: The COVID-19 pandemic was accompanied by a barrage of false, misleading, and manipulated information that inhibited effective pandemic response and led to thousands of preventable deaths. Recognition of the urgent public health threat posed by this infodemic led to the development of numerous infodemic management interventions by a wide range of actors. The need to respond rapidly and with limited information sometimes came at the expense of strategy and conceptual rigor. Given limited funding for public health communication and growing politicization of countermisinformation efforts, responses to future infodemics should be informed by a systematic and conceptually grounded evaluation of the successes and shortcomings of existing interventions to ensure credibility of the field and evidence-based action.
Objectives: This study sought to identify gaps and opportunities in existing infodemic management interventions and to assess the use of public health frameworks to structure responses to infodemics.
Methods: We expanded a previously developed dataset of infodemic management interventions, spanning guidelines, policies, and tools from governments, academic institutions, nonprofits, media companies, and other organizations, with 379 interventions included in total. We applied framework analysis to describe and interpret patterns within these interventions through their alignment with codes derived from 3 frameworks selected for their prominence in public health and infodemic-related scholarly discourse: the epidemiological model, the socioecological model, and the environmental health framework.
Results: The epidemiological model revealed the need for rigorous, transparent risk assessments to triage misinformation. The socioecological model demonstrated an opportunity for greater coordination across levels of influence, with only 11% of interventions receiving multiple socioecological codes, and more robust partnerships with existing organizations. The environmental health framework showed that sustained approaches that comprehensively address all influences on the information environment are needed, representing only 19% of the dataset.
Conclusions: Responses to future infodemics would benefit from cross-sector coordination, adoption of measurable and meaningful goals, and alignment with public health frameworks, which provide critical conceptual grounding for infodemic response approaches and ensure comprehensiveness of approach. Beyond individual interventions, a funded coordination mechanism can provide overarching strategic direction and promote collaboration.
Background: The COVID-19 pandemic emerged in the digital age and has been called the first "data-driven pandemic" in human history. The global response demonstrated that many countries had failed to effectively prepare for such an event. Learning through experience in a crisis is one way to improve the crisis management process. As the world has returned to normal after the pandemic, questions about crisis management have been raised in several countries and require careful consideration.
Objective: This review aimed to collect and organize public health professionals' experiences in crisis communication to the public during the COVID-19 pandemic.
Methods: We searched PubMed, MEDLINE, CINAHL, Web of Science, Academic Search Complete, PsycINFO, PsycARTICLES, and Communication Abstracts in February 2024 to locate English-language articles that qualitatively investigated the difficulties and needs experienced by health professionals in their communication activities during the COVID-19 pandemic.
Results: This review included 17 studies. Our analysis identified 7 themes and 20 subthemes. The 7 themes were difficulties in pandemic communication, difficulties caused by the "infodemic," difficulties in partnerships within or outside of public health, difficulties in community engagement, difficulties in effective communication, burnout among communicators, and the need to train communication specialists and establish a permanent organization specializing in communication.
Conclusions: This review identified the gaps between existing crisis communication guidelines and real-world crisis communication in the digital environment and clarified the difficulties and needs that arose from these gaps. Crisis communication strategies and guidelines should be updated with reference to the themes revealed in this review to effectively respond to subsequent public health crises.
Trial registration: PROSPERO CRD42024528975; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=528975.
International registered report identifier (irrid): RR2-10.2196/58040.
Background: Detrimental effects of misinformation were observed during the COVID-19 pandemic. Presently, amid Russia's military aggression in Ukraine, another wave of misinformation is spreading on the web and impacting our daily lives, with many citizens and politicians embracing Russian propaganda narratives. Despite the lack of an objective connection between these 2 societal issues, anecdotal observations suggest that supporters of misinformation regarding COVID-19 (BM-C) have also adopted misinformation about the war in Ukraine (BM-U) while sharing similar media use patterns and political attitudes.
Objective: The aim of this study was to determine whether there is a link between respondents' endorsement of the 2 sets of misinformation narratives, and whether some of the selected factors (media use, political trust, vaccine hesitancy, and belief rigidity) are associated with both BM-C and BM-U.
Methods: We conducted a survey on a nationally representative sample of 1623 individuals in the Czech Republic. Spearman correlation analysis was performed to identify the relationship between BM-C and BM-U. In addition, multiple linear regression was used to determine associations between the examined factors and both sets of misinformation.
Results: We discovered that BM-C and BM-U were moderately correlated (Spearman ρ=0.57; P<.001). Furthermore, increased trust in Russia and decreased trust in the local government, public media, and Western allies of the Czech Republic predicted both BM-C and BM-U. Media use indicating frustration with and avoidance of public or mainstream media, consumption of alternative information sources, and participation in web-based discussions indicative of epistemic bubbles predicted beliefs in misinformation narratives. COVID-19 vaccine refusal predicted only BM-C but not BM-U. However, vaccine refusers were overrepresented in the BM-U supporters (64/161, 39.8%) and undecided (128/505, 25.3%) individuals. Both beliefs were associated with belief rigidity.
Conclusions: Our study provides empirical evidence that supporters of COVID-19 misinformation were susceptible to ideological misinformation aligning with Russian propaganda. Supporters of both sets of misinformation narratives were primarily linked by their shared trust or distrust in the same geopolitical actors and their distrust in the local government.
Background: Vulvodynia is a chronic vulvar pain condition affecting up to 25% of the US population. However, diagnosis and effective treatment remain elusive. Many individuals with vulvodynia face stigma and medical uncertainty, leading them to seek information and web-based support. Reddit is a popular social media platform where patients share health concerns and experiences. The anonymity and accessibility of this platform make it a valuable source of real-world patient perspectives that are often overlooked in clinical settings.
Objective: This study evaluated Reddit content related to vulvodynia to explore how individuals with vulvodynia describe their symptoms, treatments, and personal experiences.
Methods: The subreddits "r/vulvodynia" and "r/vestibulodynia" were selected for analysis in May 2023. Threads were sorted from the most popular to least popular, with "popularity" measured by upvotes. Opening threads from the top 70 posts in each subreddit were extracted and analyzed using inductive qualitative analysis to identify themes and sentiment analysis to evaluate attitudes.
Results: In May 2023, the "r/vulvodynia" and "r/vestibulodynia" subreddits had a total of 7930 members (7245 and 685 members, respectively). Out of 140 analyzed threads, 77 (55%) contained negative attitudes. A total of 50 (35.7%) threads were seeking information or advice and 90 (64.3%) included some form of peer support. Inductive thematic analysis identified 6 core themes: symptoms (n=86, 61.4%), treatments (n=83, 59.3%), sexuality (n=47, 33.6%), erasure or disbelief (n=38, 27.1%), representation or media (n=17, 12.1%), and humor (n=15, 10.7%). Threads that discussed treatments (48/83, 57.8%), sexual experiences (25/47, 53.2%), and representation (14/17, 82.4%) had the highest proportions of positive attitudes, while threads that touched on erasure (21/38, 55.3%), symptoms (51/86, 59.3%), and humor (12/15, 80%), had the highest proportion of negative attitudes. A multivariable logistic regression of valence on the themes revealed that posts referring to treatments (odds ratio 12.5, 95% CI 3.7-42.2; P<.001) or representation (odds ratio 21.2, 95% CI 4.2-106.0; P<.001) were associated with significantly increased odds of positive valence. Furthermore, it was noted that 3 of the 5 most frequently discussed treatments aligned with clinical guidelines from the American College of Obstetricians and Gynecologists, American Urological Association, and International Society for the Study of Vulvovaginal Disease. Despite this alignment, threads frequently mentioned alternative remedies and frustration with medical professionals related to diagnostic delays and perceived lack of understanding.
Conclusions: This is the first study of Reddit discussions about vulvodynia. Findings suggest a gap between patient experiences and provider understanding, underscoring the n
Background: Hikikomori syndrome is a form of severe social withdrawal prevalent in Japan but is also a worldwide psychiatric issue. Twitter (subsequently rebranded X) offers valuable insights into personal experiences with mental health conditions, particularly among isolated individuals or hard-to-reach populations.
Objective: This study aimed to examine trends in firsthand and secondhand experiences reported on Twitter between 2021 and 2023 in the Japanese language.
Methods: Tweets were collected using the Twitter academic research application programming interface filtered for the following keywords: "#きこもり," "#ひきこもり," "#hikikomori," "#ニート," "#ひきこもり," "#," and "#." The Bidirectional Encoder Representations From Transformers language model was used to analyze all Japanese-language posts collected. Themes and subthemes were then inductively coded for in-depth exploration of topic clusters relevant to first- and secondhand experiences with hikikomori syndrome.
Results: We collected 2,018,822 tweets, which were narrowed down to 379,265 (18.79%) tweets in Japanese from January 2021 to January 2023. After examining the topic clusters output by the Bidirectional Encoder Representations From Transformers model, 4 topics were determined to be relevant to the study aims. A total of 400 of the most highly interacted with tweets from these topic clusters were manually annotated for inclusion and exclusion, of which 148 (37%) tweets from 89 unique users were identified as relevant to hikikomori experiences. Of these 148 relevant tweets, 71 (48%) were identified as firsthand accounts, and 77 (52%) were identified as secondhand accounts. Within firsthand reports, the themes identified included seeking social support, personal anecdotes, debunking misconceptions, and emotional ranting. Within secondhand reports, themes included seeking social support, personal anecdotes, seeking and giving advice, and advocacy against the negative stigma of hikikomori.
Conclusions: This study provides new insights into experiences reported by web-based users regarding hikikomori syndrome specific to Japanese-speaking populations. Although not yet found in diagnostic manuals classifying mental disorders, the rise of web-based lifestyles as a consequence of the COVID-19 pandemic has increased the importance of discussions regarding hikikomori syndrome in web-based spaces. The results indicate that social media platforms may represent a web-based space for those experiencing hikikomori syndrome to engage in social interaction, advocacy against stigmatization, and participation in a community that can be maintained through a web-based barrier and minimized sense of social anxiety.
Background: Many people seek health-related information online. The significance of reliable information became particularly evident due to the potential dangers of misinformation. Therefore, discerning true and reliable information from false information has become increasingly challenging.
Objective: This study aimed to present a pilot study in which we introduced a novel approach to automate the fact-checking process, leveraging PubMed resources as a source of truth using natural language processing transformer models to enhance the process.
Methods: A total of 538 health-related web pages, covering 7 different disease subjects, were manually selected by Factually Health Company. The process included the following steps: (1) using transformer models of bidirectional encoder representations from transformers (BERT), BioBERT, and SciBERT, and traditional models of random forests and support vector machines, to classify the contents of web pages into 3 thematic categories (semiology, epidemiology, and management), (2) for each category in the web pages, a PubMed query was automatically produced using a combination of the "WellcomeBertMesh" and "KeyBERT" models, (3) top 20 related literatures were automatically extracted from PubMed, and finally, (4) the similarity checking techniques of cosine similarity and Jaccard distance were applied to compare the content of extracted literature and web pages.
Results: The BERT model for the categorization of web page contents had good performance, with F1-scores and recall of 93% and 94% for semiology and epidemiology, respectively, and 96% for both the recall and F1-score for management. For each of the 3 categories in a web page, 1 PubMed query was generated and with each query, the 20 most related, open access articles within the category of systematic reviews and meta-analyses were extracted. Less than 10% of the extracted literature was irrelevant; those were deleted. For each web page, an average of 23% of the sentences were found to be very similar to the literature. Moreover, during the evaluation, it was found that cosine similarity outperformed the Jaccard distance measure when comparing the similarity between sentences from web pages and academic papers vectorized by BERT. However, there was a significant issue with false positives in the retrieved sentences when compared with accurate similarities, as some sentences had a similarity score exceeding 80%, but they could not be considered similar sentences.
Conclusions: In this pilot study, we have proposed an approach to automate the fact-checking of health-related online information. Incorporating content from PubMed or other scientific article databases as trustworthy resources can automate the discovery of similarly credible information in the health domain.
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