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Caregiver perceptions and attitudes associated with oral immunotherapy on social media.

ABSTRACT: Background: Caregiver values and preferences with regard to oral immunotherapy (OIT) for treatment of food allergies are not widely reported. Understanding caregiver perspectives is integral to establishing shared decision-making in the treatment of food allergy. Objective: We aimed to understand caregiver opinions that may influence caregivers in their decisions about OIT through social media. Methods: We searched a popular parenting web site for posts related to OIT from December 2008 to September 2019. We applied a Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework to review posts for inclusion, performed thematic content analysis to determine common themes, and calculated frequencies for each theme and subtheme. Posts and comments were included if they contained discussions about OIT for immunoglobulin E-mediated food allergy and were excluded if they were duplicates, comments from an original post from the original user, or comments on a nonrelevant original post. Results: Of 1300 posts and comments retrieved, 174 were included (13%). Most were excluded because they did not directly address OIT for food allergy. Relevant posts could fall into multiple themes and were categorized under three main themes: attitudes (n = 128, "I am scared to do OIT but scared not to!"), logistics (n = 168, "We will be doing this once LO [little one] is a little older"), and questions (n = 32, "How does it work?"). Conclusion: Caregivers communicate with each other through social media, expressing attitudes, logistics, and questions about OIT. Understanding these lay perspectives may help guide clinicians in counseling and engage caregivers in decision-making.

SUBMITTER: Kochis S

PROVIDER: S-EPMC8677497 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundIn 2022, it was estimated that more than 80,000 new cases of bladder cancer (BC) were diagnosed in the United States, 12% of which were locally advanced or metastatic BC (advanced BC). These forms of cancer are aggressive and have a poor prognosis, with a 5-year survival rate of 7.7% for metastatic BC. Despite recent therapeutic advances for advanced BC, little is known about patient and caregiver perceptions of different systemic treatments. To further explore this topic, social media can be used to collect the perceptions of patients and caregivers when they discuss their experiences on forums and online communities.ObjectiveThe aim of this study was to assess patient and caregiver perceptions of chemotherapy and immunotherapy for treating advanced BC from social media-posted data.MethodsPublic posts on social media in the United States between January 2015 and April 2021 from patients with advanced BC and their caregivers were collected. The posts included in this analysis were geolocalized to the United States; collected from publicly available domains and sites, including social media sites such as Twitter and forums such as patient association forums; and were written in English. Posts mentioning any line of chemotherapy or immunotherapy were qualitatively analyzed by two researchers to classify perceptions of treatments (positive, negative, mixed, or without perception).ResultsA total of 80 posts by 69 patients and 142 posts by 127 caregivers mentioning chemotherapy, and 42 posts by 31 patients and 35 posts by 32 caregivers mentioning immunotherapy were included for analysis. These posts were retrieved from 39 public social media sites. Among patients with advanced BC and their caregivers, treatment perceptions of chemotherapy were more negative (36%) than positive (7%). Most of the patients' posts (71%) mentioned chemotherapy factually without expressing a perception of the treatment. The caregivers' perceptions of treatment were negative in 44%, mixed in 8%, and positive in 7% of posts. In combined patient and caregiver posts, immunotherapy was perceived positively in 47% of posts and negatively in 22% of posts. Caregivers also posted more negative perceptions (37%) of immunotherapy than patients (9%). Negative perceptions of both chemotherapy and immunotherapy were mainly due to side effects and perceived lack of effectiveness.ConclusionsDespite chemotherapy being standard first-line therapy for advanced BC, negative perceptions were identified on social media, particularly among caregivers. Addressing these negative perceptions of treatment may improve treatment adoption. Strengthening support for patients receiving chemotherapy and their caregivers to help them manage side effects and understand the role of chemotherapy in the treatment of advanced BC would potentially enable a more positive experience.

Project description:BackgroundSocial media is a central context in which teens interact with their peers, creating opportunities for them to view, post, and engage with alcohol content. Because adolescent peer interactions largely occur on social media, perceptions of peer alcohol content posting may act as potent risk factors for adolescent alcohol use. Accordingly, the preregistered aims of this study were to (1) compare perceived friend, typical person, and an adolescent's own posting of alcohol content to social media and (2) examine how these perceptions prospectively relate to alcohol willingness, expectancies, and use after accounting for offline perceived peer alcohol use.MethodsThis longitudinal study included 435 adolescents (Mage = 16.91) in 11th (48%) and 12th grade (52%). Participants completed measures of alcohol content social media posts, perceived peer alcohol use, willingness to drink alcohol, alcohol expectancies, and alcohol use at two time points, 3 months apart.ResultsConsistent with preregistered hypotheses, adolescents reported that 60.3% of the typical person their age and 30.6% of their friends post alcohol content on social media. By contrast, only 7% of participants reported that they themselves posted such content to social media. After accounting for offline perceived peer drinking norms, neither perceived friend nor typical person alcohol content social media posts were prospectively associated with willingness to drink or positive or negative alcohol expectancies. Perceived friend alcohol content posts were prospectively positively associated with past 30-day alcohol consumption even after controlling for offline perceived peer drinking norms.ConclusionsAdolescents misperceived the frequency of alcohol-related posting to social media among their peers, and perceptions of friend alcohol content posts prospectively predicted alcohol use. Given the results from the current study and the ubiquity of social media among adolescents, prevention efforts may benefit from addressing misperceptions of alcohol-related posting to social media.

Project description:BACKGROUND:Seeking and sharing information are the primary uses of the internet and social media. It is therefore vital to understand the processes individuals go through when engaging with information on these diverse platforms, especially in areas such as health- and risk-related information. One important element of such engagement is evaluating and attributing expertise to others. OBJECTIVE:This study aimed to explore how meanings around expertise in relation to food allergy and intolerance (food hypersensitivity) were constructed by 2 groups of social media users: (1) those who use platforms for reasons relating to food hypersensitivity and (2) those seen as experts by this community. METHODS:Survey participants were asked open-ended questions to identify potential experts in food hypersensitivity issues on social media and to discuss their reasoning for their choices (n=143). Subsequently, 8 adult social media users with experience of managing food hypersensitivity and 5 participants designated as experts by those users took part in email interviews. Survey and interview data were analyzed thematically using Braun and Clarke's approach. RESULTS:Judging expertise on social media is a complex and multifaceted process. Users might be judged as experts through their professional background or their experience living with food hypersensitivities. How users behave on social media and the traces of their Web-based activity can influence how others will see them. Such considerations are both measured and moderated through the social media community itself. Findings highlighted how social media often act as a supportive information tool following a diagnosis, but this also raised concerns regarding the scenario of patients not being able to access suitable vetted information. CONCLUSIONS:This work has implications for understanding how users perceive expertise on social media in relation to a health concern and how information assessments are made during the management of risks. Findings provide practical insights to both medical and organizational stakeholders involved in the support of those living with life-changing conditions, such as food hypersensitivities.

Project description:BackgroundThe growing social media presence in healthcare has provided physicians with new ways to engage with patients. However, foot and ankle orthopaedic surgeons have been found to underuse social media platforms despite their known benefits for patients and surgeons. Thus, this study sought to investigate the reasons for this phenomenon and to identify potential barriers to social media utilization in clinical practice.MethodsA 19-question survey was distributed to active attending physicians identified through the American Orthopaedic Foot & Ankle Society membership database. The survey included demographic, practice characteristics, and social media use questions assessed by a 5-point Likert scale. Logistic regression was used to identify predictors of positive attitudes toward social media.ResultsFifty-eight surgeons were included. Most respondents were male (n = 43, 74.1%), in private practice (n = 31, 53.5%), and described their practice to be greater than 51% elective procedures (n = 46, 79.4%). The average years in practice was 14.8 years (standard deviation, SD: 10.0 years). A total of 32.8% (n = 19) of surgeons reported using social media as part of their clinical practice. Facebook (n = 19, 32.8%), a professional website or blog (n = 18, 31.0%), and LinkedIn (n = 15, 25.9%) were the most used platforms-primarily for practice marketing or brand development (n = 19, 32.8%). A total of 58.6% (n = 34) of surgeons reported they did not use social media. The primary reasons were the time commitment (n = 31, 53.5%), concerns about obscuring professional boundaries (n = 22, 37.9%), and concerns regarding confidentiality (n = 11, 19.0%). Many surgeons reported that social media positively influences foot and ankle surgery (n = 23, 39.7%), although no individual predictors for these views could be identified.ConclusionsFoot and ankle orthopaedic surgeons tended to view social media use positively, but the time investment and concerns over professionalism and confidentiality pose challenges to its use. Given the influence of a surgeon's social media identity on patient satisfaction and practice building, efforts should be made to streamline social media use for foot and ankle surgeons to establish their online presence.Level of evidenceLevel IV, cross-sectional study.

Project description:BackgroundAlthough primarily used for social networking and often used for social support and dissemination, data on social media platforms are increasingly being used to facilitate research. However, the ethical challenges in conducting social media research remain of great concern. Although much debated in the literature, it is the views of the public that are most pertinent to inform future practice.ObjectiveThe aim of our study was to ascertain attitudes on the ethical considerations of using social media as a data source for research as expressed by social media users and researchers.MethodsA systematic review was conducted, wherein 16 databases and 2 Internet search engines were searched in addition to handsearching, reference checking, citation searching, and contacting authors and experts. Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. Quality assessment was conducted using the quality of reporting tool (QuaRT) and findings analyzed using inductive thematic synthesis.ResultsIn total, 17 studies met the inclusion criteria. Attitudes varied from overly positive with people expressing the views about the essential nature of such research for the public good, to very concerned with views that social media research should not happen. Underlying reasons for this variation related to issues such as the purpose and quality of the research, the researcher affiliation, and the potential harms. The methods used to conduct the research were also important. Many respondents were positive about social media research while adding caveats such as the need for informed consent or use restricted to public platforms only.ConclusionsMany conflicting issues contribute to the complexity of good ethical practice in social media research. However, this should not deter researchers from conducting social media research. Each Internet research project requires an individual assessment of its own ethical issues. Guidelines on ethical conduct should be based on current evidence and standardized to avoid discrepancies between, and duplication across, different institutions, taking into consideration different jurisdictions.

Project description:BACKGROUND:The number of electronic cigarette (e-cigarette) users has been increasing rapidly in recent years, especially among youth and young adults. More e-cigarette products have become available, including e-liquids with various brands and flavors. Various e-liquid flavors have been frequently discussed by e-cigarette users on social media. OBJECTIVE:This study aimed to examine the longitudinal prevalence of mentions of electronic cigarette liquid (e-liquid) flavors and user perceptions on social media. METHODS:We applied a data-driven approach to analyze the trends and macro-level user sentiments of different e-cigarette flavors on social media. With data collected from web-based stores, e-liquid flavors were classified into categories in a flavor hierarchy based on their ingredients. The e-cigarette-related posts were collected from social media platforms, including Reddit and Twitter, using e-cigarette-related keywords. The temporal trend of mentions of e-liquid flavor categories was compiled using Reddit data from January 2013 to April 2019. Twitter data were analyzed using a sentiment analysis from May to August 2019 to explore the opinions of e-cigarette users toward each flavor category. RESULTS:More than 1000 e-liquid flavors were classified into 7 major flavor categories. The fruit and sweets categories were the 2 most frequently discussed e-liquid flavors on Reddit, contributing to approximately 58% and 15%, respectively, of all flavor-related posts. We showed that mentions of the fruit flavor category had a steady overall upward trend compared with other flavor categories that did not show much change over time. Results from the sentiment analysis demonstrated that most e-liquid flavor categories had significant positive sentiments, except for the beverage and tobacco categories. CONCLUSIONS:The most updated information about the popular e-liquid flavors mentioned on social media was investigated, which showed that the prevalence of mentions of e-liquid flavors and user perceptions on social media were different. Fruit was the most frequently discussed flavor category on social media. Our study provides valuable information for future regulation of flavored e-cigarettes.

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Caregiver perceptions and attitudes associated with oral immunotherapy on social media.

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