"I thought that crying was weakness": a thematic analysis of emotional experience in an online self-harm forum.

OBJECTIVE: This study aimed to investigate the emotional experiences and beliefs of individuals who engage in self-harm by analyzing data from an online self-harm forum. Emphasis was placed on understanding how these individuals describe and evaluate their emotions (emotion beliefs) and the role these beliefs play in their emotion regulation and self-harming behaviors. METHOD: A total of 119 posts from a self-harm discussion board on the forum were analyzed. Thematic analysis, following a critical realist perspective, was employed to identify and interpret recurring patterns in how posters articulated their emotion beliefs. RESULTS: Four themes were created during analysis: "My emotions are too much," "Self-harm as control or controlled by self-harm," "Suppression is better than expression," and "Self-harm helps me escape my emotional pain." Posters described experiencing overwhelming, uncontrollable, and unacceptable emotions, resulting in a desire to suppress or escape them through self-harm. CONCLUSIONS: Individuals struggling with self-harm hold negative beliefs about their emotions, which intensify emotional experiences and contribute to feelings of shame and guilt. The findings highlight the necessity of interventions targeting these negative emotion-related beliefs to foster alternative emotional regulation strategies and reduce reliance on self-harm, as well as the importance of increased education on these emotional beliefs for those who support them, in order to reduce stigma. Furthermore, the study emphasizes the potential of online forums in gaining valuable insights into sensitive behaviors.

African American Women's Willingness to Participate in Online Health Communities During COVID-19.

Introduction: The use of online health communities (OHCs) for health information, disease self-management, and social support increased during the COVID-19 pandemic. However, there are limited data on the willingness of African American women (AAW) to participate in OHCs. Materials and Methods: A sample of 985 AAW completed an online survey. Multinomial logistic regression examined associations between three age groups (18-29, 30-50, and 51+ years) and 10 motivators and 10 barriers to participating in OHCs. Women 51+ years were the referent group. Results: Women 51+ years were more likely to have been diagnosed with obesity and hypertension than the other groups (p < 0.01), but less likely to be diagnosed with a mental health condition than the other groups (p < 0.01). The top 2 motivators were to learn about a disease/condition (70%) and to prevent a disease/condition (64%). There were no significant differences with these variables. However, compared with women 18-29 years of age, women 51+ years were more likely to be motivated to manage an illness (p < 0.001), and more likely than the other groups to be motivated to support others (p = 0.011). The top 2 barriers were being too busy (53%) and privacy concerns (45%). Compared with women in the two other groups, women 51+ years were more concerned about privacy (p < 0.001). Discussion: AAW expressed a willingness to participate in OHCs. Willingness to participate in OHCs will vary by the topic and disease/condition and the age group. Conclusions: Opportunities exist to recruit AAW in age-specific OHCs.

Pregnant at the start of the pandemic: a content analysis of COVID-19-related posts on online pregnancy discussion boards.

BACKGROUND: A growing body of evidence indicates that the COVID-19 pandemic has had detrimental mental health effects for pregnant women. However, little is known about the specific stressors that increased anxiety for pregnant women at the start of the pandemic. The present study aimed to better understand the concerns of pregnant women during the beginning COVID-19 pandemic by analyzing content posted during the month of March 2020 on online pregnancy message boards hosted on WhatToExpect.com. METHODS: All posts published between March 1-31, 2020 on nine different due-date specific WhatToExpect.com message boards were reviewed for COVID-19 relevance. Posts mentioning COVID-19 or its direct effects (e.g., "quarantine" or "stay-at-home order") were included in our final sample. Data were coded by three authors according to a codebook developed inductively by all four authors. Posts were analyzed by overall frequency of appearance, by trimester, and temporally across the month of March 2020. RESULTS: Across the 5,541 posts included in our final sample, the most common topics were fear of COVID-19 exposure, concerns with labor and delivery, navigating social interactions, and disruptions to prenatal care. The most dominant topics by trimester were disruptions to prenatal care (first trimester), fear of COVID-19 exposure (second trimester), and concerns about labor and delivery (third trimester). CONCLUSION: Our findings add to prior literature by demonstrating the salience of social concerns, which was the third largest COVID-19 topic in our sample. Emotional distress was most salient with regard to restrictions on birthing partners, but was apparent in everything from disruptions to pregnancy announcements, to cancelled baby showers, and limitations on newborn visitors. Given that anxiety during pregnancy is associated with worse maternal-fetal health outcomes, in the early stages of future pandemics healthcare providers should focus not only on strictly health-related concerns expressed by pregnant women, but also more broadly on other sources of anxiety that may be impacting the well-being and mental health of their patients.

"Reduced to My Race Once Again": Perceptions about Underrepresented Minority Medical School Applicants in Canada and the United States.

Phenomenon: To increase racial diversity in medical school classes, many institutions have created underrepresented minority (URM) application streams. However, many URM students experience overt and passive marginalization throughout their training and this may be related to how matriculants from URM streams are perceived by their peers. Approach: We conducted a discourse analysis of online discussion forums to explore how URM streams across Canada and the United States are perceived. We analyzed 850 posts from 13 discussion threads published between 2015 and 2020. We used inductive content analysis to develop a data-driven coding scheme from which we identified common themes. Findings: Despite an overall appreciation of the benefits of a diverse workforce, participants engaged in prominent discussions surrounding the merits of URM streams. We identified perceptions that students admitted from URM streams are less academically and clinically competent, with URM applicants reporting feeling unworthy for admission in the eyes of non-URM applicants. Users felt that the influence of socioeconomic status was under-appreciated, and that admissions officers inadequately addressed this barrier. There were some applicants who perceived the admissions process as "broken" with non-URMs displaying a fear of social change, and URMs fearing that the system defines them by their racialized status. Insights: Online discussion forums provide unique insight into perceptions surrounding URM streams. We identified potentially harmful misconceptions about URM students applying to these streams and highlight that actionable measures to reduce marginalization against URM matriculants must begin before medical school.

Exploring the factors in information seeking behavior: a perspective from multinational COPD online forums.

This research establishes a theoretical framework for evaluating antecedents of the information seeking behaviors of online forum participants with chronic obstructive pulmonary disease (COPD). We evaluated the proposed framework using partial least squares structural equation modeling (PLS-SEM) after gathering data using a cross-sectional survey. We subsequently assessed the framework using importance-performance map analysis (IPMA). Findings suggest that perceived ease of use does not singularly influence COPD forum users' information seeking behavior. IPMA analysis reveals that the opportunity to interact with other forum members creates the greatest impact on COPD forum users' mindsets, among all the indicators. For healthcare professionals, the results of this study provide a blueprint in terms of utilizing COPD online forums to foster recurrent associations among forum administrators and users and by creating a strong social and informational resource for COPD information seekers.

Living with Drug Use and Addiction during the COVID-19 Pandemic.

Objectives: The present study aimed to investigate the lived experience of drug use and addiction during the COVID-19 pandemic. Methods: We analyzed 100 online forum (Reddit) posts discussing personal experiences of people who use drugs (PWUD) during the COVID-19 pandemic. Data were analyzed using inductive thematic analysis. Results: Seven themes were identified from the data: (i) Access to Illicit Drugs, (ii) Access and Adherence to Prescription Drugs and Treatment, (iii) Pandemic Specific Stressors, (iv) Boredom and Lack of Responsibility, (v) Disruption to Coping Strategies, (vi) Limited Formal Support, and (vii) Lockdown as an Opportunity. Conclusions: COVID-19 has had a considerable impact on PWUD, affecting their access to illicit and prescription drugs and exposing them to triggers such as stress and boredom. Though the pandemic negatively impacted on existing coping strategies and access to formal support services, a minority of PWUD viewed lockdown and quarantine as an opportunity to lower or stop their substance use.

Conversations between women with vulval lichen sclerosus: a thematic analysis of online forums.

BACKGROUND: Vulval lichen sclerosus (VLS) is a common condition. Despite this, there is a paucity of research investigating the impact on women's lives. Some women with VLS utilise online forums to discuss their priorities and concerns. This dialogue gives insight into the experiences of women living with VLS. METHODS: We identified the most popular public forums containing discussions between women with VLS. Inductive, thematic analysis was applied to 202 online posts spanning a six-year period. RESULTS: Five key themes were identified. Theme 1 pertained to difficulties with diagnosis. Women experience frequent delays and misdiagnosis. They report health care professionals (HCPs) with poor knowledge of their condition and some that were dismissive of their symptoms. Upon diagnosis women expressed relief and frustration. Theme 2 related to rationalisation and validation of their experience. Women expressed a desire to know why they were affected, what caused their symptoms and gain reassurance. Theme 3 dealt with women's motivation to control their condition. Women want to know what triggers a flare-up so they can limit their relapses. They want to self-manage their condition and have an active role in partnership with HCPs. Theme 4 related to women sharing and seeking advice from the forums. The lived experiences of other women is valued by fellow sufferers. In particular, women are keen to try other treatments, conventional and alternative. The final theme related to the social repercussions of the condition. Sociocultural factors may prevent women from talking about their condition to friends, family and HCPs. They feel embarrassed by their symptoms. Some women reported relationship breakdown as a repercussion of the disease. CONCLUSIONS: Improving the knowledge of HCPs with regards to VLS may reduce problems with diagnosis. In addition, delivering improved women's health education in schools may reduce the taboo attached to women's health. This may empower women to talk about their condition and seek help sooner. Once diagnosed, clinicians with the appropriate expertise should care for women with VLS. Women should be encouraged to take an active role in managing their condition in partnership with clinicians. Future research priorities include identifying the aetiology, triggers for flare-ups and novel therapies.

Genetic discrimination views in online discussion forums: Perspectives from Canadian forumites.

Recent advancements in genetic technologies have made genetic information increasingly sought out in a wide range of non-therapeutic contexts, which has increased the risk that such information be used to discriminate against individuals. Frequently, it is genetic counselors who have to respond to questions about genetic discrimination (GD) from worried patients. Here, we examine the general Canadian public's knowledge, attitudes, and concerns about GD through a comprehensive analysis and categorization of posts from selected Canadian online discussion forums. Overall, we collected 1,638 posts, from which we coded 694 posts originating from newspaper comment sections and Reddit posts that were categorized to yield 6 main themes that consistently concerned Canadian users on the topics of GD: (a) discussions centered around how insurance business practices can be affected by genetic information; (b) issues in employment; (c) 'fear' of genetic testing and eugenics; (d) preventive approaches such as law and human rights instruments; (e) the predictive value and privacy that should be conferred to genetic information; and (f) other ethical issues. Overall, discussions addressed risk stratification models applied to genetic information and personal insurance underwriting. We find that many forum users (aka forumites) fear GD in insurance and employment, consider genetic information private, and strongly support different legal approaches to prevent GD. However, we find dissension among forumites that may represent different advocacy groups such as insurers and employers. From these important concerns and social conceptions, we discuss issues that should be taken into consideration for the development of future policies and information campaigns addressing GD in Canada and other countries.

'Nothing will stop me from giving the gift of life': a qualitative analysis of egg donor forum posts.

Online spaces are increasingly important for our collective consciousness and provide an opportunity to document changing ideas, subjectivities and experiences surrounding new reproductive technologies. This paper reports on the first study of egg donation and online discussion boards in UK-based forums. Using thematic analysis, we investigated how donors use online forums and explored how they present themselves as possible donors in online spaces. Three major themes were identified: 'using online forums to exchange knowledge and experiences', 'egg donation as a gift' and 'having a drive to donate'. Findings from the study reveal how donors enter online spaces looking for advice, presenting themselves as available and weaving themselves into an online community. There exist multiple ways in which donors construct and narrate their own participation in the process of egg donation. Presenting a donor identity in these online forums is not a straightforward matter of helping by giving but also involves a specific drive. While more research is needed on the range of possible motivations, this study gives a better understanding of the available online information and the co-construction of donor identities on discussions boards.

Determination of Patient Sentiment and Emotion in Ophthalmology: Infoveillance Tutorial on Web-Based Health Forum Discussions.

BACKGROUND: Clinical data in social media are an underused source of information with great potential to allow for a deeper understanding of patient values, attitudes, and preferences. OBJECTIVE: This tutorial aims to describe a novel, robust, and modular method for the sentiment analysis and emotion detection of free text from web-based forums and the factors to consider during its application. METHODS: We mined the discussion and user information of all posts containing search terms related to a medical subspecialty (oculoplastics) from MedHelp, the largest web-based platform for patient health forums. We used data cleaning and processing tools to define the relevant subset of results and prepare them for sentiment analysis. We executed sentiment and emotion analyses by using IBM Watson Natural Language Understanding to generate sentiment and emotion scores for the posts and their associated keywords. The keywords were aggregated using natural language processing tools. RESULTS: Overall, 39 oculoplastic-related search terms resulted in 46,381 eligible posts within 14,329 threads. Posts were written by 18,319 users (117 doctors; 18,202 patients) and included 201,611 associated keywords. Keywords that occurred ≥500 times in the corpus were used to identify the most prominent topics, including specific symptoms, medication, and complications. The sentiment and emotion scores of these keywords and eligible posts were analyzed to provide concrete examples of the potential of this methodology to allow for a better understanding of patients' attitudes. The overall sentiment score reflects a positive, neutral, or negative sentiment, whereas the emotion scores (anger, disgust, fear, joy, and sadness) represent the likelihood of the presence of the emotion. In keyword grouping analyses, medical signs, symptoms, and diseases had the lowest overall sentiment scores (-0.598). Complications were highly associated with sadness (0.485). Forum posts mentioning body parts were related to sadness (0.416) and fear (0.321). Administration was the category with the highest anger score (0.146). The top 6 forum subgroups had an overall negative sentiment score; the most negative one was the Neurology forum, with a score of -0.438. The Undiagnosed Symptoms forum had the highest sadness score (0.448). The least likely fearful posts were those from the Eye Care forum, with a score of 0.260. The overall sentiment score was much more negative before the doctor replied. The anger, disgust, fear, and sadness emotion scores decreased in likelihood, whereas joy was slightly more likely to be expressed after doctors replied. CONCLUSIONS: This report allows physicians and researchers to efficiently mine and perform sentiment analysis on social media to better understand patients' perspectives and promote patient-centric care. Important factors to be considered during its application include evaluating the scope of the search; selecting search terms and understanding their linguistic usages; and establishing selection, filtering, and processing criteria for posts and keywords tailored to the desired results.

From Lay Depression Narratives to Secular Ritual Healing: An Online Ethnography of Mental Health Forums.

The article aims at analysing online depression forums enabling lay reinterpretation and criticism of expert biomedical discourses. Firstly, two contrasting interpretations of depression are reconstructed: expert psy-discourses are confronted with the phenomenological descriptions of lay experiences, with a special emphasis on online forums as empirical platforms hosting such debates. After clarifying the general theoretical stakes concerning contested 'depression narratives', the results of an online ethnography are introduced: the main topics appearing in online discussions are summarised (analysing how the abstract tensions between lay and expert discourses appear in the actual discussions), along with the idealtypical discursive logics (analysing pragmatic advises, attempts of reframing self-narratives and expressions of unconditional recognition). Finally, based on these analyses an attempt is made to explore the latent functionality of online depression forums by referring to a secular 'ritual healing' existing as an unreflected, contingent potential.

Fussy eating in toddlers: A content analysis of parents' online support seeking.

The development of healthy eating habits in childhood is essential to reducing later risk of obesity. However, many parents manage fussy eating in toddlerhood with ineffective feeding practices that limit children's dietary variety and reinforce obesogenic eating behaviours. Understanding parents' feeding concerns and support needs may assist in the development of feeding interventions designed to support parents' uptake of responsive feeding practices. A total of 130 original posts by parents of toddlers (12-36 months) were extracted from the online website Reddit's 'r/Toddlers' community discussion forum over a 12-month period. Qualitative content analysis was used to categorise the fussy eating topics that parents were most concerned about and the types of support they were seeking from online peers. The most frequently raised fussy eating concerns were refusal to eat foods offered, inadequate intake (quantity and quality), problematic mealtime behaviours and changes in eating patterns. Parents were primarily seeking practical support (69.2%) to manage emergent fussy eating behaviours. This consisted of requests for practical feeding advice and strategies or meal ideas. Nearly half of parents sought emotional support (47.7%) to normalise their child's eating behaviour and seek reassurance from people with lived experience. Informational support about feeding was sought to a lesser extent (16.2%). Fussy eating poses a barrier to children's dietary variety and establishing healthy eating habits. These results suggest parents require greater knowledge and skills on 'how to feed' children and support to manage feeding expectations. Health professionals and child feeding interventions should focus on providing parents with practical feeding strategies to manage fussy eating. Supporting parents to adopt and maintain responsive feeding practices is vital to developing healthy eating habits during toddlerhood that will continue throughout adulthood.

Are online surgical discussion boards a safe and useful venue for surgeons to ask for advice? A review of the International Hernia Collaboration Facebook Group.

BACKGROUND: Social media is a growing medium for disseminating information among surgeons. The International Hernia Collaboration Facebook Group (IHC) is a widely utilized social media platform to share ideas and advice on managing patients with hernia-related diseases. Our objective was to assess the safety and utility of advice provided. METHODS: Overall, 60 consecutive de-identified clinical threads were extracted from the IHC in reverse chronological order. A group of three hernia specialists evaluated all threads for unsafe posts, unhelpful comments, and if an established evidence-based management strategy was provided. Positive and negative controls for safe and unsafe answers were included in seven threads and reviewers were blinded to their presence. Reviewers were free to access all online and professional resources (except the IHC). RESULTS: There were 598 unique responses (median 10, 1-26 responses per thread) to the 60 clinical threads/scenarios. The review team correctly identified all seven positive and negative controls. Most responses were safe (96.6%) but some were unhelpful (28.4%). For sixteen threads, the reviewers believed there was an established evidence-based answer; however, only six were provided. In addition, 14 responses were considered unsafe, but only four were corrected. CONCLUSIONS: The vast majority of responses were considered helpful; however, evidence-based management is typically not provided and unsafe recommendations often go uncontested. While the IHC allows wide dissemination of hernia-related surgical advice/discussions, surgeons should be cautious when using the IHC for clinical advice. Mechanisms to provide evidence-based management strategies and to identify unsafe advice are needed to improve quality within online forums and to prevent patient harm.

Is the American College of Surgeons Online Communities a safe and useful venue to ask for surgical advice?

BACKGROUND: Many surgeons rely on the American College of Surgeons (ACS) Community Forums for advice on managing complex patients. Our objective was to assess the safety and usefulness of advice provided on the most popular surgical forum. METHODS: Overall, 120 consecutive, deidentified clinical threads were extracted from the General Surgery community in reverse chronological order. Three groups of three surgeons (mixed academic and community perspectives) evaluated the 120 threads for unsafe or dangerous posts. Positive and negative controls for safe and unsafe answers were included in 20 threads, and reviewers were blinded to their presence. Reviewers were free to access all online and professional resources. RESULTS: There were 855 unique responses (median 7, 2-15 responses per thread) to the 120 clinical threads/scenarios. The review teams correctly identified all positive and negative controls for safety. While 58(43.3%) of threads contained unsafe advice, the majority (33, 56.9%) were corrected. Reviewers felt that a there was a standard of care response for 62/120 of the threads of which 50 (80.6%) were provided by the responses. Of the 855 responses, 107 (12.5%) were considered unsafe/dangerous. CONCLUSION: The ACS Community Forums are generally a safe and useful resource for surgeons seeking advice for challenging cases. While unsafe or dangerous advice is not uncommon, other surgeons typically correct it. When utilizing the forums, advice should be taken as a congregate, and any single recommendation should be approached with healthy skepticism. However, social media such as the ACS Forums is self-regulating and can be an appropriate method for surgeons to communicate challenging problems.

Exploring the use and quality of Internet discussion forums in pregnancy: A qualitative analysis.

BACKGROUND: The Internet is widely used as a source of health information to assist decision making in pregnancy. Concerningly, the quality of information shared on online pregnancy forums is unclear. Our objectives were to explore online pregnancy forum health-related use and evaluate quality of information shared. METHODS: This retrospective qualitative study had two phases of data collection and analysis. First, thematic analysis of a representative sample (n = 480) of posts explored motivators for forum use. Second, a subgroup (n = 153) of threads with clinical content was assessed for congruence with reputable sources. RESULTS: Common motivators for forum engagement were a desire for lived experience, unlimited access, and the opportunity to express emotions. Of 1098 responses sharing advice, information, or experience, 601 (54.7%) were accurate; 230 (20.9%) were erroneous, incomplete, or misleading; and 267 (24.3%) lacked credible evidence. Of these, 60 (5.5%) were potentially harmful. Responses often directed women to a health care practitioner, but concerningly, failed to refer ten women in need of urgent medical assessment. Few discussions were self-regulating, with only 12 of 230 (5.2%) poor-quality messages subsequently rectified. CONCLUSIONS: Exchange of information and emotional support among peers are key functions of online pregnancy forums. There is a modest prevalence of poor-quality or potentially harmful information but more concerningly a lack of peer moderation. We suggest health care practitioners ensure pregnant women have a clear understanding of when clinical consultation is required. Clinicians may wish to discuss the supportive community aspects of online forums in cases where offline support is lacking.

A meta-synthesis of women's experiences of online forums for maternal mental illness and stigma.

Perinatal mental illness affects 15% of women; however, only half of these women access treatment. Some women with untreated perinatal mental illness may continue to suffer with mental illness after the perinatal period. Evidence suggests that one barrier to accessing treatment is stigma. Forums may provide an acceptable place for women to converse about the stigmatised symptoms of maternal mental illness. Reducing stigma may increase treatment uptake. This study aimed to review and synthesise the qualitative research on maternal mental illness forums and stigma so that stigma can be addressed and treatment improved. A meta-synthesis was conducted to describe and interpret qualitative studies regarding forum use and maternal mental illness stigma. A systematic search of seven electronic databases and Google Scholar was performed. Additional references were collected through screening references of the identified studies. Five studies were identified that reported women's experiences of online forums for maternal mental illness and stigma. The synthesis identified four key themes: (1) a safe place to talk; (2) virtual support; (3) stigma and identity; and (4) repair of the mother identity. Stigma maybe reduced by forum discourse that reconceptualises what is to be a "good mother" and separates stigma and maternal identity. This synthesis provides a novel and more detailed framework for the stigma of maternal mental illness and forum use. This suggests forums may enable women to explore their dual identity and repair their maternal identity, and this may reduce stigma. Healthcare providers could discuss forum use with their clients.

Sexual violence and safety: the narratives of transwomen in online forums.

An online forum analysis was conducted to explore experiences of sexual violence and safety among transwomen, with a particular focus on transwomen of colour. Four online forums were chosen for the analysis. Three key themes were identified: dating and violence in intimate relationships; fear of violence and safety strategies; and coping after sexual assault. Forum posters faced heightened gender policing and scrutiny, due to not conforming to normative ideals of femininity. Femininity was also predicated on white, middle-class status, and associated with domesticity and romance. As a result, expressions of femininity from non-white backgrounds could be read as deviant or excessive. The intersection of deviation from gender norms and femininity based on whiteness meant that transwomen of colour faced disproportionate levels of violence, both in public and private spaces. Transwomen of colour also faced disadvantage due to participation in higher-risk forms of sex work, low socioeconomic status and employment, and institutional discrimination. Coping mechanisms to deal with cumulative disadvantage included seeking support from health professionals and transgender community networks. However, it also included more harmful forms of self-medicating such as heavy alcohol and drug use, self-harm and suicide attempts.

Patients' Convergence of Mass and Interpersonal Communication on an Online Forum: Hybrid Methods Analysis.

BACKGROUND: Patients are increasingly taking an active role in their health. In doing so, they combine both mass and interpersonal media to gratify their cognitive and affective needs (ie, convergence). Owing to methodological challenges when studying convergence, a detailed view of how patients are using different types of media for needs fulfillment is lacking. OBJECTIVE: The aim of this study was to obtain insight into the frequency of reported convergence, how convergence affects what posters write online, motives for posting, and the needs posters are trying to fulfill. METHODS: Using a hybrid method of content analysis and supervised machine learning, this study used naturally available data to fill this research gap. We analyzed opening posts (N=1708) of an online forum targeting cancer patients and their relatives (Kanker.nl). RESULTS: Nearly one-third of the forum opening posts contained signs of convergence in mass or interpersonal media. Posts containing mass media references disclosed less personal information and were more geared toward community enhancement and sharing experiences compared to posts without convergence. Furthermore, compared to posts without signs of convergence, posts that included interpersonal media references disclosed more personal information, and posters were more likely to ask for the experiences of fellow users to fulfill their needs. Within posts containing signs of convergence, posts including interpersonal media references reported fewer shortages of information, disclosed more information about the disease, and were more active in seeking other posters' experiences compared to posts containing mass media references. CONCLUSIONS: The current study highlights the intertwining of media platforms for patients. The insights of this study can be used to adapt the health care system toward a new type of health information-seeking behavior in which one medium is not trusted to fulfill all needs. Instead, providers should incorporate the intertwinement of sources by providing patients with reliable websites and forums through which they can fulfill their needs.

Superusers' Engagement in Asthma Online Communities: Asynchronous Web-Based Interview Study.

BACKGROUND: Superusers, defined as the 1% of users who write a large number of posts, play critical roles in online health communities (OHCs), catalyzing engagement and influencing other users' self-care. Their unique online behavior is key to sustaining activity in OHCs and making them flourish. Our previous work showed the presence of 20 to 30 superusers active on a weekly basis among 3345 users in the nationwide Asthma UK OHC and that the community would disintegrate if superusers were removed. Recruiting these highly skilled individuals for research purposes can be challenging, and little is known about superusers. OBJECTIVE: This study aimed to explore superusers' motivation to actively engage in OHCs, the difficulties they may face, and their interactions with health care professionals (HCPs). METHODS: An asynchronous web-based structured interview study was conducted. Superusers of the Asthma UK OHC and Facebook groups were recruited through Asthma UK staff to pilot and subsequently complete the questionnaire. Open-ended questions were analyzed using content analysis. RESULTS: There were 17 superusers recruited for the study (14 patients with asthma and 3 carers); the majority were female (15/17). The age range of participants was 18 to 75 years. They were active in OHCs for 1 to 6 years and spent between 1 and 20 hours per week reading and 1 and 3 hours per week writing posts. Superusers' participation in OHCs was prompted by curiosity about asthma and its medical treatment and by the availability of spare time when they were off work due to asthma exacerbations or retired. Their engagement increased over time as participants furthered their familiarity with the OHCs and their knowledge of asthma and its self-management. Financial or social recognition of the superuser role was not important; their reward came from helping and interacting with others. According to the replies provided, they showed careful judgment to distinguish what can be dealt with through peer advice and what needs input from HCPs. Difficulties were encountered when dealing with misunderstandings about asthma and its treatment, patients not seeking advice from HCPs when needed, and miracle cures or dangerous ideas. Out of 17 participants, only 3 stated that their HCPs were aware of their engagement with OHCs. All superusers thought that HCPs should direct patients to OHCs, provided they are trusted and moderated. In addition, 9 users felt that HCPs themselves should take part in OHCs. CONCLUSIONS: Superusers from a UK-wide online community are highly motivated, altruistic, and mostly female individuals who exhibit judgment about the complexity of coping with asthma and the limits of their advice. Engagement with OHCs satisfies their psychosocial needs. Future research should explore how to address their unmet needs, their interactions with HCPs, and the potential integration of OHCs in traditional healthcare.

A focused netnographic study exploring experiences associated with counterfeit and contaminated anabolic-androgenic steroids.

BACKGROUND: A primary consequence of illicit drug markets and the absence of regulation is the variable quality or purity of the final product. Analysis of anabolic-androgenic steroid seizures shows that these products can contain adulterated products, product not included on the label, or product of unsatisfactory standard. While the potential negative effects of counterfeit anabolic-androgenic steroids (AAS) use is a recognised risk associated with use, no study has explored personal experiences associated with use. The aim of the present study was to use online discussion forums to investigate and explore the experiences associated with the purchase and consumption of counterfeit AAS among consumers. METHODS: An online search was conducted to identify online forums that discussed counterfeit or contaminated AAS; three were deemed suitable for the study. The primary source of data for this study was the 'threads' from these online forums, identified using search terms including 'counterfeit', 'tampered', and 'fake'. Threads were thematically analysed for overall content, leading to the identification of themes. RESULTS: Data from 134 threads (2743 posts from 875 unique avatars) was included. Two main themes were identified from the analysis: (1) experiences with counterfeit product and (2) harms and benefits associated with counterfeit product. CONCLUSIONS: The use of counterfeit or contaminated substances represents a public health concern. Those who report using performance and image enhancing drugs such as AAS for non-medical purposes report consuming these substances and experiencing harm as a result. Consumers take steps to limit coming into contact with counterfeit or contaminated product, though recognise that many of these have limitations. The implementation of accessible drug safety checking services may provide an opportunity to provide consumers with information to assist them with making healthier choices.