Leveraging Social Media as a Thermometer to Gauge Patient and Caregiver Concerns: COVID-19 and Prostate Cancer.
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ABSTRACT: Patient summary
We performed a study of online posts by patients with prostate cancer and their families on their perspectives about COVID-19. Concerns about the impact of COVID-19 included worry about delays in testing and treatment. Our research also revealed misinformation in COVID-19-related posts.
SUBMITTER: Loeb S
PROVIDER: S-EPMC8317896 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:The emergence of e-patients has encouraged consumers, people who are non-medical experts, to be more engaged in healthcare needs by utilizing online sources via social media. However, the nature of social media and regulation issues have caused concerns for the reliability and validity of the shared information. These phenomena shape consumers behavior in leveraging social media for e-patient activities. This study investigates consumer behavior using an integrated model based on the Unified Theory of Acceptance and Use of Technology (UTAUT) and the Protection Motivation Theory (PMT). The data collected from the participants (N = 312) was analyzed using partial least square structural equation modelling. The results showed that behavioral intention to use social media for e-patient activities was significantly affected by performance expectancy, effort expectancy, perceived severity, perceived susceptibility, and response efficacy; and that behavioral intention corresponded positively to usage intention. In addition, the results also indicate that the intention to use social media for health-related purposes is driven by awareness of preventing health problems and attempts to reduce the risk of developing an illness. Based on findings, this study recommends strategies and initiatives to optimize social media for promoting a healthy lifestyle and educating society about public health and healthcare management.
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Project description:ObjectiveTo survey the social media outlets Twitter and Instagram for public posts related to adenoidectomy surgery. This study aims to investigate the attitudes and perceptions of patients and caregivers on social media, through thematic content-analysis of social media posts regarding adenoidectomy.Study designNon-real world qualitative study.SettingTwitter and Instagram social media platforms.MethodsPublic posts uploaded between February, 2021 and February, 2023 using the hashtags "#adenoidectomy," and "#adenoidectomyrecovery" were searched. Posts were excluded if they were unrelated to adenoidectomy or were in a non-English language. Relevant posts were stratified demographically as patient or caregiver and pre- or postoperative, and categorized into relevant themes for analysis. Outcomes were measured as the total number of posts.ResultsA total of 394 relevant posts were analyzed. A significance threshold of P < 0.05 was used. Patients posted significantly more posts regarding procedure pain (P = 0.002) and concern for appearance (P = 0.048) compared to caregivers. Caregivers posted significantly (P < 0.001) more posts regarding condition awareness and were significantly (P < 0.001) more likely to spread positivity in their posts compared to patients themselves. Posts made by female caregivers were more likely to reference fear, while those made by male caregivers were more likely to provide education (P = 0.002).ConclusionPatients may worry about appearance and mental health while caregivers are more likely to spread information and positivity. Male and female caregivers may also use social media differently. A better understanding of patient and caregiver concerns may optimize physician interaction and involvement.
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Project description:BackgroundCOVID-19 is likely to have negatively impacted foster families but few data sources are available to confirm this.ObjectiveThe current study used Reddit social media data to examine how foster families are faring in the pandemic. Discussion topics were identified and examined for changes before and after COVID-19.Participants and settingComments were collected from three Reddit online discussion boards dedicated to foster families (N = 11,830).MethodsWe used machine learning techniques, including Latent Dirichlet Allocation, for topic modeling and textual analysis for qualitative coding of the Reddit comments.ResultsResults showed that three main topics had both significant quantitative and meaningful qualitative changes before and after COVID-19. There were significant increases in conversation about becoming a foster parent (F = 5.75, p = 0.02) and activities for foster children (F = 10.61, p = 0.001), whereas there was a significant decrease in discussing permanency (F = 9.46, p = 0.003) before and after the onset of COVID-19. Qualitative coding showed that regarding the topic of becoming a parent, excitement over approval of foster care license before COVID-19 shifted to foster families' increased anxieties about delays in their licensing cases after COVID-19. For permanency, content changed from the best interest of the child and reunifications before COVID-19 to concerns over family separations and permanency challenges after COVID-19. Regarding activities for foster children, content related to everyday activities before COVID-19 changed to specific activities foster children and families could do during lockdowns. Results suggest areas child welfare workers may focus on to better support foster families during and after the pandemic.
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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.
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Project description:ImportanceNew dissemination methods are needed to engage physicians in evidence-based continuing medical education (CME).ObjectiveTo examine the effectiveness of social media in engaging physicians in non-industry-sponsored CME.DesignWe tested the effect of different media platforms (e-mail, Facebook, paid Facebook and Twitter), CME topics, and different "hooks" (e.g., Q&A, clinical pearl and best evidence) on driving clicks to a landing site featuring non-industry sponsored CME. We modelled the effects of social media platform, CME topic, and hook using negative binomial regression on clicks to a single landing site. We used clicks to landing site adjusted for exposure and message number to calculate rate ratios. To understand how physicians interact with CME content on social media, we also conducted interviews with 10 physicians.SettingThe National Physicians Alliance (NPA) membership.ParticipantsNPA e-mail recipients, Facebook followers and friends, and Twitter followers.Main outcomes and measuresClicks to the NPA's CME landing site.ResultsOn average, 4,544 recipients received each message. Messages generated a total of 592 clicks to the landing site, for a rate of 5.4 clicks per 1000 recipients exposed. There were 5.4 clicks from e-mail, 11.9 clicks from Facebook, 5.5 clicks from paid Facebook, and 6.9 clicks from Twitter to the landing site for 1000 physicians exposed to each of 4 selected CME modules. A Facebook post generated 2.3x as many clicks to the landing site as did an e-mail after controlling for participant exposure, hook type and CME topic (p<0.001). Twitter posts (p = 0.13) and paid Facebook posts (p = 0.06) were not statistically different from e-mail in generating clicks to the landing site. Use of different hooks to engage physicians had no impact on clicks to the landing site. Interviews with physicians suggested that social media might not be a preferred vehicle for disseminating CME.ConclusionsSocial media has a modest impact on driving traffic to evidence-based CME options. Facebook had a superior effect on driving physician web traffic to evidence-based CME compared to other social media platforms and email.
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Project description: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.
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Project description:INTRODUCTION:Successful strategies are needed to address parental vaccine hesitancy, a significant public health issue. The study objective was to assess whether an Internet-based platform with vaccine information and interactive social media components improved parents' vaccine-related attitudes. STUDY DESIGN:A three-arm RCT. SETTING/PARTICIPANTS:The study was conducted in a large Colorado integrated healthcare organization. Parents were enrolled during September 2013 through October 2015 and followed through November 2016; data were analyzed in 2017. Parents, recruited during pregnancy, were given a survey about vaccine-related attitudes at enrollment (i.e., baseline) and when their child was aged 3-5 months and 12-15 months (Timepoints 1 and 2, respectively). Parental vaccine hesitancy was assessed at baseline. INTERVENTION:Study participants were randomized to the following: a study website with vaccine information and social media components (VSM arm); a website with vaccine information only (VI); or usual care. MAIN OUTCOME MEASURES:Change in parental vaccine attitudes over time by baseline degree of vaccine hesitancy. RESULTS:Among 1,093 study participants, 945 (86.5%) completed all three surveys. Comparing baseline with Timepoint 1 among vaccine-hesitant parents, the VSM and VI arms were associated with significant improvements in attitudes regarding vaccination benefits compared to usual care (VSM mean change 0.23 on a 5-point scale, 95% CI=0.05, 0.40, VI mean change 0.22, 95% CI=0.04, 0.40). Comparing baseline with Timepoint 2 among hesitant parents, the VSM and VI arms were also associated with significant reductions in parental concerns about vaccination risks compared to usual care (VSM mean change -0.37, 95% CI= -0.60, -0.14, VI mean change -0.31, 95% CI= -0.55, -0.07). Self-efficacy around vaccine decision making also improved among vaccine-hesitant parents. No intervention effect was observed among parents not vaccine-hesitant at baseline. CONCLUSIONS:Among vaccine-hesitant parents, an Internet-based intervention improved parents' attitudes about vaccines. TRIAL REGISTRATION:This study was registered at www.clinicaltrials.gov NCT01873040.
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Project description:BackgroundThe COVID-19 pandemic has created a global health crisis that is affecting economies and societies worldwide. During times of uncertainty and unexpected change, people have turned to social media platforms as communication tools and primary information sources. Platforms such as Twitter and Sina Weibo have allowed communities to share discussion and emotional support; they also play important roles for individuals, governments, and organizations in exchanging information and expressing opinions. However, research that studies the main concerns expressed by social media users during the pandemic is limited.ObjectiveThe aim of this study was to examine the main concerns raised and discussed by citizens on Sina Weibo, the largest social media platform in China, during the COVID-19 pandemic.MethodsWe used a web crawler tool and a set of predefined search terms (New Coronavirus Pneumonia, New Coronavirus, and COVID-19) to investigate concerns raised by Sina Weibo users. Textual information and metadata (number of likes, comments, retweets, publishing time, and publishing location) of microblog posts published between December 1, 2019, and July 32, 2020, were collected. After segmenting the words of the collected text, we used a topic modeling technique, latent Dirichlet allocation (LDA), to identify the most common topics posted by users. We analyzed the emotional tendencies of the topics, calculated the proportional distribution of the topics, performed user behavior analysis on the topics using data collected from the number of likes, comments, and retweets, and studied the changes in user concerns and differences in participation between citizens living in different regions of mainland China.ResultsBased on the 203,191 eligible microblog posts collected, we identified 17 topics and grouped them into 8 themes. These topics were pandemic statistics, domestic epidemic, epidemics in other countries worldwide, COVID-19 treatments, medical resources, economic shock, quarantine and investigation, patients' outcry for help, work and production resumption, psychological influence, joint prevention and control, material donation, epidemics in neighboring countries, vaccine development, fueling and saluting antiepidemic action, detection, and study resumption. The mean sentiment was positive for 11 topics and negative for 6 topics. The topic with the highest mean of retweets was domestic epidemic, while the topic with the highest mean of likes was quarantine and investigation.ConclusionsConcerns expressed by social media users are highly correlated with the evolution of the global pandemic. During the COVID-19 pandemic, social media has provided a platform for Chinese government departments and organizations to better understand public concerns and demands. Similarly, social media has provided channels to disseminate information about epidemic prevention and has influenced public attitudes and behaviors. Government departments, especially those related to health, can create appropriate policies in a timely manner through monitoring social media platforms to guide public opinion and behavior during epidemics.
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Project description:Understanding patient and caregiver experiences is a critical component of the conception, design, and implementation of clinical research studies. The "Database of Individual Patient Experiences" (DIPEx) is an innovative, evidence-based approach for eliciting rich information about health experiences. We conducted a formative evaluation with 14 pediatric oncology researchers to assess the value of using data from a DIPEx study on patient and caregiver experiences with childhood cancer to inform patient-centered research in pediatric oncology. Participants identified barriers to incorporating patient perspectives and experiences into their research and how the DIPEx approach could be leveraged to facilitate this practice.
| S-EPMC8427548 | biostudies-literature
Project description:BackgroundElectronic patient portals have become common and offer many potential benefits for patients' self-management of health care. These benefits could be especially important for older adult patients dealing with significant chronic illness, many of whom have caregivers, such as a spouse, adult child, or other family member or friend, who help with health care management. Patient portals commonly contain large amounts of personal information, including diagnoses, health histories, medications, specialist appointments, lab results, and billing and insurance information. Some health care systems provide proxy accounts for caregivers to access a portal on behalf of a patient. It is not well known how much and in what way caregivers are using patient portals on behalf of patients and whether patients see any information disclosure risks associated with such access.ObjectiveThe objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers.MethodsWe conducted semistructured interviews with 10 older adult patients with chronic illness. We asked them about their relationship with their caregivers, their use of their patient portal, their caregiver's use of the portal, and their perceptions about the benefits and risks of their caregiver's use of the portals. We also asked them about their comfort level with caregivers having access to information about a hypothetical diagnosis of a stigmatized condition. Two investigators conducted a thematic analysis of the qualitative data.ResultsAll patients identified caregivers. Some had given caregivers access to their portals, in all cases by sharing log-in credentials, rather than by setting up an official proxy account. Patients generally saw benefits in their caregivers having access to the information and functions provided by the portal. Patients generally reported that they would be uncomfortable with caregivers learning of stigmatized conditions and also with caregivers (except spouses) accessing financial billing information.ConclusionsPatients share their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but are unaware of all the information those caregivers can access. Better portal design could alleviate these unwanted information disclosures.
| S-EPMC6240158 | biostudies-literature