Understanding barriers and facilitators of appropriate antibiotic use: a qualitative analysis of an online parenting forum.

PURPOSE: Antibiotic use and misuse are common in pregnant women and young children. Few studies have assessed real-world discussions of antibiotics in these populations. Using social media posts of pregnant women and parents, our goal was to identify key themes about facilitators and barriers to appropriate antibiotic usage. METHODS: A purposive sample of public posts and comments relevant to antibiotic use was collected from the BabyCenter United States social media site. Using a directed content analysis, themes related to facilitators and barriers to appropriate antibiotic use were identified. RESULTS: Seven hundred and twenty-six posts and 5227 comments were analysed. Themes centred around individual factors, interpersonal factors, and structural factors. Individual factors included knowledge and beliefs. Though misinformation was present, most parents were aware of appropriate antibiotic usage and perceived antibiotics as safe and effective. Some hesitance around using antibiotics led to recommendations for home remedies or over-the-counter treatments. Interpersonal factors focused on a lack of available offline peer support, the expertise of providers, as well as a potential lack of attention from those providers. Structural factors, including access to care, also impacted parents' antibiotic use and misuse. CONCLUSION: Though most parents demonstrated appropriate knowledge about antibiotics and a willingness to follow guidelines, negative experiences with their providers, a lack of support from peers, and structural factors presented as potential barriers to appropriate antibiotic use. Implementing avenues for peer support for parents, allowing more time for providers to address parents' concerns, and improving access to providers could improve appropriate antibiotic use in parents.

How do BMI-restrictive policies impact women seeking NHS-funded IVF in the United Kingdom? A qualitative analysis of online forum discussions.

BACKGROUND: Across the United Kingdom's National Health Service (NHS), women with a Body Mass Index (BMI) of > 30 face restrictions accessing In Vitro Fertilisation (IVF) treatment. This study asks: what are the (un)expected and (un)intended harms and consequences experienced by women restricted from accessing NHS-funded IVF due to BMI threshold criteria? METHODS: Posts from a popular infertility online forum were collected and reflexively thematically analysed. RESULTS: On the forum, users discussed how they struggled to lose weight, how they faced time pressures to meet BMI thresholds, and they shared knowledge on how to comply or appear compliant with BMI cut-offs. Our study found widespread moral discourses around body weight were reproduced in the forum, particularly commonplace narratives that body weight is under personal control, that people with a high BMI should 'work' to change their bodies, and that this work helps demonstrate deservingness for IVF treatment. Moralising discourses around weight were linked to the responsibilities of a hoped-for future of motherhood, as users performed deservingness through emphasising their commitment to meeting the BMI threshold. CONCLUSION: We conclude that NHS-IVF policies in the United Kingdom do not consider the burdensome emotional and moral work placed on people seeking treatment due to inflexible upper-limit BMI criteria.

In the United Kingdom, people can access public funding for In Vitro Fertilisation (IVF) treatment if certain criteria are met. Funding restrictions differ between geographical areas, but most areas restrict treatment to women with a Body Mass Index (BMI) below 30. This study explores the unexpected and unintended harms experienced by women restricted from NHS-funded IVF due to these BMI criteria. Posts from a popular infertility online forum were collected and thematically analysed. The study found moralising discourses around body weight which emphasized that women had personal control over their bodies and needed to 'work' to change their bodies to show deservingness for treatment. We conclude that NHS-IVF policies in the UK overlook the emotional and moral burdens placed on individuals due to rigid BMI criteria. As the impact of BMI limits on healthcare access is an under-researched topic, we believe this work is important for demonstrating the harms of BMI-restrictive policies.

Association Between Prosuicide Website Searches Through Google and Suicide Death in the United States From 2010 to 2021: Lagged Time-Series Analysis.

BACKGROUND:  The rate of suicide death has been increasing, making understanding risk factors of growing importance. While exposure to explicit suicide-related media, such as description of means in news reports or sensationalized fictional portrayal, is known to increase population suicide rates, it is not known whether prosuicide website forums, which often promote or facilitate information about fatal suicide means, are related to change in suicide deaths overall or by specific means. OBJECTIVE:  This study aimed to estimate the association of the frequency of Google searches of known prosuicide web forums and content with death by suicide over time in the United States, by age, sex, and means of death. METHODS:  National monthly Google search data for names of common prosuicide websites between January 2010 and December 2021 were extracted from Google Health Trends API (application programming interface). Suicide deaths were identified using the CDC (Centers for Disease Control and Prevention) National Vital Statistics System (NVSS), and 3 primary means of death were identified (poisoning, suffocation, and firearm). Distributed lag nonlinear models (DLNMs) were then used to estimate the lagged association between the number of Google searches on suicide mortality, stratified by age, sex, and means, and adjusted for month. Sensitivity analyses, including using autoregressive integrated moving average (ARIMA) modeling approaches, were also conducted. RESULTS:  Months in the United States in which search rates for prosuicide websites increased had more documented deaths by intentional poisoning and suffocation among both adolescents and adults. For example, the risk of poisoning suicide among youth and young adults (age 10-24 years) was 1.79 (95% CI 1.06-3.03) times higher in months with 22 searches per 10 million as compared to 0 searches. The risk of poisoning suicide among adults aged 25-64 was 1.10 (95% CI 1.03-1.16) times higher 1 month after searches reached 9 per 10 million compared with 0 searches. We also observed that increased search rates were associated with fewer youth suicide deaths by firearms with a 3-month time lag for adolescents. These models were robust to sensitivity tests. CONCLUSIONS:  Although more analysis is needed, the findings are suggestive of an association between increased prosuicide website access and increased suicide deaths, specifically deaths by poisoning and suffocation. These findings emphasize the need to further investigate sites containing potentially dangerous information and their associations with deaths by suicide, as they may affect vulnerable individuals.

Online Forums as a Tool for Broader Inclusion of Voices on Health Care Communication Experiences and Serious Illness Care: Mixed Methods Study.

BACKGROUND: Existing health care research, including serious illness research, often underrepresents individuals from historically marginalized communities. Capturing the nuanced perspectives of individuals around their health care communication experiences is difficult. New research strategies are needed that increase engagement of individuals from diverse backgrounds. OBJECTIVE: The aim of this study was to develop a mixed methods approach with qualitative online forums to better understand health communication experiences of individuals, including people from groups historically marginalized such as Black and Latino individuals; older adults; and people with low income, disability, or serious illness. METHODS: We used a multiphase mixed methods, community-informed research approach to design study instruments and engage participants. We engaged a diverse group of collaborators with lived experience of navigating the health care system who provided feedback on instruments, added concepts for testing, and offered guidance on creating a safe experience for participants (phase 1). We conducted a national quantitative survey between April and May 2021 across intrapersonal, interpersonal, and systems-level domains, with particular focus on interpersonal communication between patients and clinicians (phase 2). We conducted two asynchronous, qualitative online forums, a technique used in market research, between June and August 2021, which allowed us to contextualize the learnings and test concepts and messages (phase 3). Using online forums allowed us to probe more deeply into results and hypotheses from the survey to better understand the "whys" and "whats" that surfaced and to test public messages to encourage action around health. RESULTS: We engaged 46 community partners, including patients and clinicians from a Federally Qualified Health Center, to inform study instrument design. In the quantitative survey, 1854 adults responded, including 50.5% women, 25.2% individuals over 65 years old, and 51.9% individuals with low income. Nearly two-thirds identified as non-Hispanic white (65.7%), 10.4% identified as non-Hispanic Black, and 15.5% identified as Hispanic/Latino. An additional 580 individuals participated in online forums, including 60.7% women, 17.4% individuals over 65 years old, and 49.0% individuals with low income. Among the participants, 70.3% identified as non-Hispanic white, 16.0% as non-Hispanic Black, and 9.5% as Hispanic/Latino. We received rich, diverse input from our online forum participants, and they highlighted satisfaction and increased knowledge with engagement in the forums. CONCLUSIONS: We achieved modest overrepresentation of people who were over 65 years old, identified as non-Hispanic Black, and had low income in our online forums. The size of the online forums (N=580) reflected the voices of 93 Black and 55 Hispanic/Latino participants. Individuals who identify as Hispanic/Latino remained underrepresented, likely because the online forums were offered only in English. Overall, our findings demonstrate the feasibility of using the online forum qualitative approach in a mixed methods study to contextualize, clarify, and expound on quantitative findings when designing public health and clinical communications interventions.

Topic modelling online depression forums: beyond narratives of self-objectification and self-blaming.

BACKGROUND: Depression raises a double challenge: besides the negative mood and the intrusive thoughts, the relation to the self also becomes difficult. Online forums are analysed as communicative platforms enabling the interactive reconstruction of the self. AIMS: The discourses of online depression forums are explored. Firstly, narrative patterns are identified according to their thematic focus (e.g. dysfunctional body, challenges of intimacy) and discursive logic (e.g. information exchange, support). Secondly, narratives are analysed in order to describe various ways of grounding a depressed self. METHODS: ∼70.000 depression-related posts from the biggest English-speaking online forums (e.g. www.reddit.com/r/depression, www.healthunlocked.com) were analysed. Quantitative (LDA topic modelling) and qualitative (deep reading) approaches were used simultaneously to determine the optimal number of topics and their interpretation. RESULTS: 13 topics were identified and interpreted according to their content and communicative function. Based on the inter-topic distances four clusters were identified (medicalized, intimacy-oriented, critical and uninhabitable self-narratives). CONCLUSIONS: The clusters of the 13 topics highlight various ways of narrating depression and the depressed self. Based on a comparison with a systematic review of mental illness recovery narratives, depression forums cover most narrative genres and emotional tones, thus create a unique opportunity for integrating the depressing experiences in the self.

Experiences and disease self-management in individuals living with chronic kidney disease: qualitative analysis of the National Kidney Foundation's online community.

BACKGROUND: Self-management of chronic kidney disease (CKD) is one of the keys in improving CKD outcomes and quality of life. There has been an increased use of online health communities to share the experiences of those living with CKD. By analyzing the CKD online forum data, this study aims to: 1) understand the experiences and challenges of individuals living with CKD, and 2) explore how online communities may help CKD patients in improving CKD self-management. METHODS: Publicly available posts of peer interactions on the National Kidney Foundation's online community for individuals affected by CKD were extracted in April 2021 using computer programming. A total of 20,436 posts were collected, of which 400 posts were analyzed using inductive thematic analysis, and saturation was reached. Two researchers coded each post independently, and discrepancies were discussed to reach consensus. RESULTS: The analysis identified seven themes: 1) Dynamics of CKD status, 2) CKD comorbidities, 3) Managing CKD and symptoms, 4) Life participation and outlook; 5) Navigating healthcare and clinical needs, 6) Medical tests and results; and 7) Support on the forum. The results revealed that comorbidities were common in CKD patients and early-stage CKD was not communicated in a timely manner to patients by the health care community; living with CKD challenged both CKD and caregivers; some common challenges included but were not limited to the management of a diet for CKD and co-morbidities (especially co-morbid diabetes), CKD dynamics and symptoms, and fear of/ways to prevent progression. Individuals living with CKD primarily used the online forum to share and seek information and emotional support for managing CKD (including co-morbidities). CONCLUSIONS: Challenges of living with CKD were found not only in those with advanced kidney disease and those on dialysis, but also in those with early and middle stages. Information and emotional support from the online forum serve as a platform to empower CKD individuals with the knowledge, skills and confidence for CKD self-management. Proactive and innovative strategies with a combination of virtual and real settings to improve self-management for individuals with all-stage CKD needs to be explored and tailored.

Using Large-scale Social Media Analytics to Understand Patient Perspectives About Urinary Tract Infections: Thematic Analysis.

BACKGROUND: Current qualitative literature about the experiences of women dealing with urinary tract infections (UTIs) is limited to patients recruited from tertiary centers and medical clinics. However, traditional focus groups and interviews may limit what patients share. Using digital ethnography, we analyzed free-range conversations of an online community. OBJECTIVE: This study aimed to investigate and characterize the patient perspectives of women dealing with UTIs using digital ethnography. METHODS: A data-mining service was used to identify online posts. A thematic analysis was conducted on a subset of the identified posts. Additionally, a latent Dirichlet allocation (LDA) probabilistic topic modeling method was applied to review the entire data set using a semiautomatic approach. Each identified topic was generated as a discrete distribution over the words in the collection, which can be thought of as a word cloud. We also performed a thematic analysis of the word cloud topic model results. RESULTS: A total of 83,589 posts by 53,460 users from 859 websites were identified. Our hand-coding inductive analysis yielded the following 7 themes: quality-of-life impact, knowledge acquisition, support of the online community, health care utilization, risk factors and prevention, antibiotic treatment, and alternative therapies. Using the LDA topic model method, 105 themes were identified and consolidated into 9 categories. Of the LDA-derived themes, 25.7% (27/105) were related to online community support, and 22% (23/105) focused on UTI risk factors and prevention strategies. CONCLUSIONS: Our large-scale social media analysis supports the importance and reproducibility of using online data to comprehend women's UTI experience. This inductive thematic analysis highlights patient behavior, self-empowerment, and online media utilization by women to address their health concerns in a safe, anonymous way.

Analysis of the dental care queries in the "Mouth-Nose" discussion forum of the French association of patients with Gougerot-Sjögren's syndromes and dryness.

BACKGROUND: Primary Sjögren Syndrome is a rare autoimmune systemic disease characterized by impaired secretory functions of the exocrine gland. One of the main clinical features is dry mouth and subsequent oral diseases, which are also found in patients with Sicca. This leads to a marked deterioration in the quality of life and the patient's search for information and solutions. Many patients turn to patients' associations that offer moments of sharing to their members, especially through online discussion forums. Today, these forums represent quality material for a sociological or biomedical analysis of patients' concerns, as close as possible to their daily lives. Our objective is to analyze the concerns of patients with SS or Sicca regarding their dry mouth especially dental care. METHODS: In this cross-sectional observation study, a quantitative analysis of the Mouth-Nose online forum discussion of the French Association of Patients with Gougerot-Sjögren's Syndromes and Dryness have been performed. After reading and re-reading, initial request themes, topics, and subtopics were established and coding was performed. Then, the 885 threads were classified depending the initial request, pragma-linguistic indices and the main topic discussed in the thread. After identifying the threads dealing with dental care, we looked at which types of care were most discussed and classified the discussions according to whether or not the patient was satisfied with their care at the dentist. RESULTS: The majority of the initial requests are posts for experiences sharing and/or advice. The topic of "dental care" is one of the main concerns of the forum users. Among the threads that concern dental care, requests to share experience with implants are in the majority. Finally, the majority of the posts on dental care relate to care in private dental practice, deals with dental implants and prevention and resulted mainly in patient satisfaction. CONCLUSIONS: Analysis of the forum reveals importance of patient concerns about prevention, and care costs due to implant treatment, which add to disease burden. Most of messages relate favorable experiences with their dentists, which is in line with the approach of sharing experiences and support characteristic of a forum.

Barriers and enablers to the moderation of self-harm content for a young person's online forum.

BACKGROUND: Self-harm amongst young people in the United Kingdom is higher than in other European countries. Young people who self-harm are often reluctant to seek professional help, turning increasingly to the internet for support, including online forums. There are concerns about misinformation or harmful content being shared, potentially leading to self-harm contagion. Moderation of online forums can reduce risks, improving forum safety. Moderation of self-harm content, however, is an under-researched area. AIMS: Using the Behaviour Change Wheel (BCW), this study examines the barriers and enablers to moderation of self-harm content and suggests behaviour change techniques (BCTs) to address barriers. METHOD: Qualitative interviews with 8 moderators (of a total of 16) from the UK's leading young people's support service for under 25s, The Mix, were conducted. RESULTS: Thematic analysis identified eleven enablers, four barriers and one both an enabler and a barrier. Barriers included emotional exhaustion, working with partial information, access to timely support, vagueness within the guidelines and influence of community users. BCTs selected included increasing social support through a moderation buddy. CONCLUSIONS: Optimisation strategies focus on increasing the support and level of information available to moderators and could be considered by other organisations providing similar services.

Mapping Information Needs of Patients With Sexually Transmitted Infections Using Web-Based Data Sources: Grounded Theory Investigation.

BACKGROUND: According to the World health organization (WHO), more than 1 million sexually transmitted infections (STIs) are acquired each day across the world. The incidence rates of STIs in the United States are at a record high for the fourth consecutive year. Owing to the stigma associated with the incidence of STI, there is a general reluctance to seek information in person. Instead, web-based information sources remain the primary avenues of information-seeking. However, these sources are designed without a comprehensive understanding of the information needs of individuals who have contracted STIs. OBJECTIVE: This study aimed to investigate the information needs of individuals who have or suspect they have contracted an STI. A better understanding of their information needs can drive the design of more effective digital interventions. METHODS: This is a qualitative and analytical study of 549 transcripts (consisting of queries posted over the last 10 years) from web-based forums of the American Sexual Health Association (ASHA), which allows patients, volunteers, and health care providers connect anonymously. The analysis follows a grounded theory (GT) approach with multiple coding stages to uncover categories and themes. RESULTS: Three categories of information needs emerged. The first two, clinical and logistical, are similar to other contexts. However, our analysis shows that there is a significant need for the last category-psychosocial information. Approximately 59% of instances are linked to concerns such as confusion, discretion, remorse, and others. These needs vary across the stages of a patient's journey from symptom manifestation to treatment maintenance. CONCLUSIONS: Responding to the needs of individuals who have or suspect they have contracted an STI requires compassionate and personalized responses (beyond factual clinical and logistical information). Web-based forums provide anonymity but do not adequately incorporate mechanisms, practices, or incentives to respond to diverse psychosocial concerns. Innovative approaches to add such support can make the digital interventions more effective for this group of individuals.

What parents of adolescents in residential substance use treatment want from continuing care: A content analysis of online forum posts.

Background: Parents of adolescents in residential substance use (SU) treatment face a myriad of barriers to continuing care services. Growing research suggests that mobile health (mHealth) technologies can overcome common barriers to continuing care services, yet no work has addressed parents' needs. To gain insight into parents' continuing care needs, we analyzed online forum posts made by parents who received a novel mHealth intervention. Methods: Thirty parents received access to an online networking forum where they could connect with our adolescent SU expert or the community of parents also navigating their adolescent's post-discharge transition. In real-time, participants could ask questions and share information, experiences, and emotional support. Results: Twenty-one parents (70%) posted at least once; 12 parents made 15 posts to our expert, while 18 parents made 50 posts to the parent community. Thematic analysis uncovered five major themes: parenting skills; parent support; managing the post-discharge transition; adolescent SU; and family functioning. Conclusions: Parents discussed a range of topics directly and indirectly related to their adolescent's treatment. Incorporating networking forums into mHealth continuing care interventions offers parents a secure space to ask questions, share concerns, and gather information needed to support their adolescent's transition home.

International-focused Online Forum: A Good Way to Jointly Manage the COVID-19 Pandemic for Global Critical Care Community.

How to cite this article: Xiao-Bo H, Poonyathawon S, Semedi BP, Xiao-Yi Z, Wei F, Da-Wei W, et al. International-focused Online Forum: A Good Way to Jointly Manage the COVID-19 Pandemic for Global Critical Care Community. Indian J Crit Care Med 2020;24(4):283-284.

Urinary tract infections and antibiotic use in pregnancy - qualitative analysis of online forum content.

BACKGROUND: Antibiotics are standard treatment for asymptomatic and symptomatic urinary tract infections (UTIs) in pregnancy. Their overuse, however, can contribute to antimicrobial resistance (AMR) and expose the foetus to drugs that might affect its development. Preventative behaviours are currently the best option to reduce incidences of UTIs and to avoid the use of antibiotics in pregnancy. The aim of this study was to explore women's experiences of UTIs in pregnancy to develop an understanding of their concerns and to optimise and encourage behaviours that facilitate appropriate use of antibiotics. METHODS: An online pregnancy forum in the United Kingdom (UK) was used to collect data on women's discussions of UTIs. A total of 202 individual threads generated by 675 different usernames were selected for analysis. The data was organised using NVivo 11® software and then analysed qualitatively using inductive thematic analysis. RESULTS: Women's perceptions of UTIs and antibiotic use in pregnancy were driven by their pre-natal attachment to the foetus. UTIs were thought to be common and high risk in pregnancy, which meant that antibiotics were viewed as essential in the presence of suspected symptoms. The dominant view about antibiotics was that their use was safe and of little concern in pregnancy. Women reported an emotional reaction to developing a UTI. They coped by seeking information about behaviour change strategies to assist with recovery and through emotional support from the online forum. CONCLUSIONS: Women face dual risks when they experience UTIs; the risk from the infection and the risk from antibiotic treatment. Pre-natal attachment to the foetus is highlighted in the decision making process. The focus is on the shorter term risk from UTIs while undermining the longer term risks from antibiotic use, especially the risk of AMR. A balanced view needs to be presented, and evidence-based infection prevention strategies should be promoted, to women to ensure appropriate antibiotic use in pregnancy, to address the global challenge of AMR.

Safety of Electronic Cigarette Use During Breastfeeding: Qualitative Study Using Online Forum Discussions.

BACKGROUND: Electronic cigarettes (e-cigs) are an increasingly popular alternative to smoking, helping to prevent relapse in those trying to quit and with the potential to reduce harm as they are likely to be safer than standard cigarettes. Many women return to smoking in the postpartum period having stopped during pregnancy, and while this can affect their decisions about breastfeeding, little is known about women's opinions on using e-cigs during this period. OBJECTIVE: The aim of this study is to explore online forum users' current attitudes, motivations, and barriers to postpartum e-cig use, particularly as a breastfeeding mother. METHODS: Data were collected via publicly accessible (identified by Google search) online forum discussions, and a priori codes identified. All transcripts were entered into NVivo for analysis, with a template approach to thematic analysis being used to code all transcripts from which themes were derived. RESULTS: Four themes were identified: use, perceived risk, social support and evidence, with a number of subthemes identified within these. Women were using e-cigs to prevent postpartum return to smoking, but opinions on their safety were conflicting. They were concerned about possible transfer of harmful products from e-cigs via breastmilk and secondhand exposure, so they were actively seeking and sharing information on e-cigs from a variety of sources. Although some women were supportive of e-cig use, others provided harsh judgement for mothers who used them. CONCLUSIONS: E-cigs have the potential to reduce the number of women who return to smoking in the postpartum period and potentially improve breastfeeding rates, if breastfeeding mothers have access to relevant and reliable information. Health care providers should consider discussing e-cigs with mothers at risk of returning to smoking in the postpartum period.

Parents' Experiences of Caring for Their Child at the Time of Discharge After Cardiac Surgery and During the Postdischarge Period: Qualitative Study Using an Online Forum.

BACKGROUND: Congenital heart disease (CHD) is the most common class of birth defects, which encompasses a broad spectrum of severity ranging from relatively minor to extremely complex. Improvements in surgery and intensive care have resulted in an increasing number of infants with the most complex lesions surviving after surgery until the time of discharge from the hospital, but there remain concerns about out-of-hospital mortality, variability in how services are provided at the time of discharge and beyond, and difficulties experienced by some families in accessing care. OBJECTIVE: As part of a mixed-methods program of research, this study aimed to elicit parental experiences of caring for a child with CHD after hospital discharge following a cardiac surgery and collect information to inform interviews for a subsequent stage of the project. METHODS: A closed online discussion group was set up via the main Facebook page of the Children's Heart Federation (CHF), a national charity offering support to children with heart disease and their families. The discussion group was advertised through the charity's webpage, and interested participants were directed to the charity's Facebook page from where they could access the closed Facebook group and respond to questions posted. The CHF moderated the forum, and the research team provided questions to be posted on the forum. Responses were collated into a single transcript and subjected to thematic analysis. RESULTS: The forum was open for 4 months, and 91 participants (mean age 35 years, range 23-58 years, 89 females, 89 parents, and 2 grandparents) submitted demographic information and were given access to the closed forum group. A common experience of isolation emerged from the data, with descriptions of how that isolation was experienced (physical, social, knowledge) and its psychological impact, together with the factors that made it worse or better. Woven through this theme was the notion that parents developed expertise over time. CONCLUSIONS: The use of an online forum provided a means for eliciting data from a large number of parents regarding their experiences of caring for their child after hospital discharge following cardiac surgery. Parents engaged with the forum and were able to articulate what went well and what went less well, together with sharing their stories and supporting each other through doing so. Some parents clearly found participating in the forum a positive experience in itself, demonstrating the potential of social media as a mechanism for providing support and reducing isolation. Information gained from the forum was used to shape questions for interviews with parents in a subsequent phase of the study. Furthermore, the themes identified in the online forum have contributed to identifying ways of improving the provision of care and support for parents of high-risk babies following discharge after cardiac surgery.

Symptom clusters in women with breast cancer: an analysis of data from social media and a research study.

PURPOSE: User-generated content on social media sites, such as health-related online forums, offers researchers a tantalizing amount of information, but concerns regarding scientific application of such data remain. This paper compares and contrasts symptom cluster patterns derived from messages on a breast cancer forum with those from a symptom checklist completed by breast cancer survivors participating in a research study. METHODS: Over 50,000 messages generated by 12,991 users of the breast cancer forum on MedHelp.org were transformed into a standard form and examined for the co-occurrence of 25 symptoms. The k-medoid clustering method was used to determine appropriate placement of symptoms within clusters. Findings were compared with a similar analysis of a symptom checklist administered to 653 breast cancer survivors participating in a research study. RESULTS: The following clusters were identified using forum data: menopausal/psychological, pain/fatigue, gastrointestinal, and miscellaneous. Study data generated the clusters: menopausal, pain, fatigue/sleep/gastrointestinal, psychological, and increased weight/appetite. Although the clusters are somewhat different, many symptoms that clustered together in the social media analysis remained together in the analysis of the study participants. Density of connections between symptoms, as reflected by rates of co-occurrence and similarity, was higher in the study data. CONCLUSIONS: The copious amount of data generated by social media outlets can augment findings from traditional data sources. When different sources of information are combined, areas of overlap and discrepancy can be detected, perhaps giving researchers a more accurate picture of reality. However, data derived from social media must be used carefully and with understanding of its limitations.

Medical terminology in online patient-patient communication: evidence of high health literacy?

BACKGROUND: Health communication research and guidelines often recommend that medical terminology be avoided when communicating with patients due to their limited understanding of medical terms. However, growing numbers of e-patients use the Internet to equip themselves with specialized biomedical knowledge that is couched in medical terms, which they then share on participatory media, such as online patient forums. OBJECTIVE: Given possible discrepancies between preconceptions about the kind of language that patients can understand and the terms they may actually know and use, the purpose of this paper was to investigate medical terminology used by patients in online patient forums. DESIGN: Using data from online patient-patient communication where patients communicate with each other without expert moderation or intervention, we coded two data samples from two online patient forums dedicated to thyroid issues. RESULTS: Previous definitions of medical terms (dichotomized into technical and semi-technical) proved too rudimentary to encapsulate the types of medical terms the patients used. Therefore, using an inductive approach, we developed an analytical framework consisting of five categories of medical terms: dictionary-defined medical terms, co-text-defined medical terms, medical initialisms, medication brand names and colloquial technical terms. The patients in our data set used many medical terms from all of these categories. DISCUSSION AND CONCLUSIONS: Our findings suggest the value of a situated, condition-specific approach to health literacy that recognizes the vertical kind of knowledge that patients with chronic diseases may have. We make cautious recommendations for clinical practice, arguing for an adaptive approach to medical terminology use with patients.

Assessment of a multimedia-based prospective method to support public deliberations on health technology design: participant survey findings and qualitative insights.

BACKGROUND: Using a combination of videos and online short stories, we conducted four face-to-face deliberative workshops in Montreal (Quebec, Canada) with members of the public who later joined additional participants in an online forum to discuss the social and ethical implications of prospective technologies. This paper presents the participants' appraisal of our intervention and provides novel qualitative insights into the use of videos and online tools in public deliberations. METHODS: We applied a mixed-method study design. A self-administered survey contained open- and close-ended items using a 5-level Likert-like scale. Absolute frequencies and proportions for the close-ended items were compiled. Qualitative data included field notes, the transcripts of the workshops and the participants' contributions to the online forum. The qualitative data were used to flesh out the survey data describing the participants' appraisal of: 1) the multimedia components of our intervention; 2) its deliberative face-to-face and online processes; and 3) its perceived effects. RESULTS: Thirty-eight participants contributed to the workshops and 57 to the online forum. A total of 46 participants filled-in the survey, for a response rate of 73 % (46/63). The videos helped 96 % of the participants to understand the fictional technologies and the online scenarios helped 98 % to reflect about the issues raised. Up to 81 % considered the arguments of the other participants to be well thought-out. Nearly all participants felt comfortable sharing their ideas in both the face-to-face (89 %) and online environments (93 %), but 88 % preferred the face-to-face workshop. As a result of the intervention, 85 % reflected more about the pros and cons of technology and 94 % learned more about the way technologies may transform society. CONCLUSIONS: This study confirms the methodological feasibility of a deliberative intervention whose originality lies in its use of videos and online scenarios. To increase deliberative depth and foster a strong engagement by all participants, face-to-face and online components need to be well integrated. Our findings suggest that online tools should be designed by considering, one the one hand, the participants' self-perceived ability to share written comments and, on the other hand, the ease with which other participants can respond to such contributions.

The Impact of Personality Factors and Preceding User Comments on the Processing of Research Findings on Deep Brain Stimulation: A Randomized Controlled Experiment in a Simulated Online Forum.

BACKGROUND: Laypeople frequently discuss medical research findings on Web-based platforms, but little is known about whether they grasp the tentativeness that is inherent in these findings. Potential influential factors involved in understanding medical tentativeness have hardly been assessed to date. OBJECTIVE: The research presented here aimed to examine the effects of personality factors and of other users' previous contributions in a Web-based forum on laypeople's understanding of the tentativeness of medical research findings, using the example of research on deep brain stimulation. METHODS: We presented 70 university students with an online news article that reported findings on applying deep brain stimulation as a novel therapeutic method for depression, which participants were unfamiliar with. In a randomized controlled experiment, we manipulated the forum such that the article was either accompanied by user comments that addressed the issue of tentativeness, by comments that did not address this issue, or the article was accompanied by no comments at all. Participants were instructed to write their own individual user comments. Their scientific literacy, epistemological beliefs, and academic self-efficacy were measured. The outcomes measured were perceived tentativeness and tentativeness addressed in the participants' own comments. RESULTS: More sophisticated epistemological beliefs enhanced the perception of tentativeness (standardized ß=.26, P=.034). Greater scientific literacy (stand. ß=.25, P=.025) and greater academic self-efficacy (stand. ß=.31, P=.007) were both predictors of a more extensive discussion of tentativeness in participants' comments. When forum posts presented in the experiment addressed the issue of tentativeness, participants' subsequent behavior tended to be consistent with what they had read in the forum, F2,63=3.66; P=.049, ηp(2)=.092. CONCLUSIONS: Students' understanding of the tentativeness of research findings on deep brain stimulation in an online forum is influenced by a number of character traits and by the previous comments that were contributed to the forum by other users. There is potential for targeted modification of traits such as scientific literacy, epistemological beliefs, and academic self-efficacy to foster critical thinking in laypeople who take part in online discussions of medical research findings.

Evaluation of a video, telephone follow-ups, and an online forum as components of a psychoeducational intervention for caregivers of persons with advanced cancer.

OBJECTIVE: Our aim was to evaluate caregivers' perceptions of a video, telephone follow-up, and online forum as components of a psychoeducational intervention. METHOD: Qualitative semistructured face-to-face interviews were conducted with 12 participants two weeks post-intervention. The study was conducted from September of 2012 to May of 2015. Family caregivers were recruited from four home hospice organizations (HCA Hospice Care, Metta Hospice, Singapore Cancer Centre, and Agape Methodist Hospice) and the National Cancer Centre outpatient clinic in Singapore. A purposive sample was employed, and participants were recruited until data saturation. Qualitative interviews were transcribed verbatim. Transcripts were coded and analyzed using content analysis. Two of the research team members were involved in the data analysis. RESULTS: Two-thirds of participants were females (n = 8). Their ages ranged from 22 to 67 (mean = 50.50, SD = 11.53). About two-thirds were married (n = 7). Most participants were caring for a parent (n = 10), one for a spouse, and one for her mother-in-law. Caregivers favored the use of video for delivery of educational information. They liked the visual and audio aspects of the video. The ability to identify with the caregiver and scenarios in the video helped in the learning process. They appreciated telephone follow-ups from healthcare professionals for informational and emotional support. The online forum as a platform for sharing of information and provision of support was not received well by the caregivers in this study. The reasons for this included their being busy, not being computer savvy, rarely surfing the internet, and not feeling comfortable sharing with strangers on an online platform. SIGNIFICANCE OF RESULTS: This study provided insight into caregivers' perceptions of various components of a psychoeducational intervention. It also gave us a better understanding of how future psychoeducational interventions and support for caregivers of persons with advanced cancer could be provided.