Understanding Pediatric Experiences With Symptomatic Varicoceles: Mixed Methods Study of an Online Varicocele Community.

BACKGROUND: Varicoceles affect up to 30% of postpubertal adolescent males. Studying this population remains difficult due to this topic's sensitive nature. Using the popularity of social media in this cohort and natural language processing (NLP) techniques, our aim was to identify perceptions of adolescent males on an internet varicocele forum to inform how physicians may better evaluate and counsel this pediatric population. OBJECTIVE: We aimed to characterize themes of discussion and specific concerns expressed by adolescents using a mixed methods approach involving quantitative NLP and qualitative annotation of an online varicocele community. METHODS: We extracted posts from the Reddit community "r/varicocele" (5100 members) with criteria of discussant age ≤21 years and word count >20. We used qualitative thematic analysis and the validated constant comparative method, as well as an NLP technique called the meaning extraction method with principal component analysis (MEM/PCA), to identify discussion themes. Two investigators independently interrogated 150 randomly selected posts to further characterize content based on NLP-identified themes and calculated the Kaiser-Meyer-Olkin (KMO) statistic and the Bartlett test. Both quantitative and qualitative approaches were then compared to identify key themes of discussion. RESULTS: A total of 1103 posts met eligibility criteria from July 2015 to June 2022. Among the 150 randomly selected posts, MEM/PCA and qualitative thematic analysis separately revealed key themes: an overview of varicocele (40/150, 27%), management (29/150, 19%), postprocedural experience (28/150, 19%), seeking community (26/150, 17%) and second opinions after visiting a physician (27/150, 18%). Quantitative analysis also identified "hypogonadism" and "semen analysis" as concerns when discussing their condition. The KMO statistic was >0.60 and the Bartlett test was <0.01, indicating the appropriateness of MEM/PCA. The mean age was 17.5 (SD 2.2; range 14-21) years, and there were trends toward higher-grade (40/45, 89% had a grade of ≥2) and left-sided varicoceles. Urologists were the topic of over 50% (53/82) of discussions among discussants, and varicocelectomy remained the intervention receiving the most interest. A total of 60% (90/150) of discussants described symptomatic varicoceles, with 62 of 90 reporting pain, 24 of 90 reporting hypogonadism symptoms, and 45 of 90 reporting aesthetics as the primary concern. CONCLUSIONS: We applied a mixed methods approach to identify uncensored concerns of adolescents with varicoceles. Both qualitative and quantitative approaches identified that adolescents often turned to social media as an adjunct to doctors' visits and to seek peer support. This population prioritized symptom control, with an emphasis on pain, aesthetics, sexual function, and hypogonadism. These data highlight how each adolescent may approach varicoceles uniquely, informing urologists how to better interface with this pediatric population. Additionally, these data may highlight the key drivers of decision-making when electing for procedural management of varicoceles.

Development of a Best Practice Guidance on Online Peer Support for People with Young-Onset Dementia.

This work aimed to develop a Best Practice Guidance on online peer support for people with young-onset dementia (YOD). The Best Practice Guidance was developed through a systematic literature review, focus groups, an online survey, and interviews and consultations with people with YOD and professionals. The Best Practice Guidance consists of two parts. Part 1 contains information for people with YOD about what online peer support entails, what to expect from it, and how to get involved. Part 2 is aimed at those who facilitate or moderate online peer support (professionals or people with lived experience) and includes guidelines on how to optimize online peer support for people with YOD. The Best Practice Guidance on online peer support provides (1) people with YOD with evidence-based, relevant, and accessible information about what online peer support entails and how it could help them, (2) providers and facilitators with guidelines on how to optimize online peer support for people with YOD, and (3) healthcare professionals with a concise and accessible tool for signposting. Future research is needed to implement and disseminate the Best Practice Guidance among dementia organizations and healthcare practices and should include rigorous studies on the implementation and sustainability of online peer support for people with YOD.

Illness experience and (unmet) needs of women with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH): a qualitative analysis of an online forum.

OBJECTIVE: Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is a congenital condition characterized by the underdevelopment or complete absence of the uterus and the upper part of the vagina. Diagnosis is commonly made during adolescence, a sensitive period for psychophysical development, following the absence of menstruation. Having MRKH syndrome can have a profound and multifaceted psychosocial impact that characterizes these women's subjective experiences, although it continues to be qualitatively understudied. This article explores the lived experience of women with MRKH spontaneously recounted on an online support forum. The aim was to gain insight into the features of the syndrome experience to understand deeply the emotional and social impact of the condition and the individual needs expressed online. METHODS: Using a naturalistic observation stance, data was collected from an online support forum for MRKH women and systematically analyzed using thematic analysis. RESULTS: Four main interconnected themes are identified: the impact of being diagnosed with MRKH, the difficult interaction with the medical environment, challenging social relationships, and the unmet needs of MRKH women. CONCLUSION: A multidisciplinary and person-centered approach that provides effective and sensitive management of the condition and its psychosocial implications, is essential. Recommendations for future research and practical clinical implications for healthcare professionals are proposed.

Support sought and offered online for miscarriage: content analysis of a Facebook miscarriage support group.

OBJECTIVE: Responses to miscarriage can vary, with many, but not all, people describing inadequate support, feelings of isolation and significant psychological distress. Limited knowledge exists about the support that people seek and offer online following miscarriage. We aimed to explore how people impacted by miscarriage use an online Facebook support group to seek and offer support. METHODS AND MEASURES: We employed directed content analysis to examine 270 opening posts and 3,484 responding comments within an 'open' Facebook support group for miscarriage. Opening posts and responding comments were coded into five social support categories using an existing support framework. RESULTS: Informational Support, particularly medical information or advice, was the most commonly sought support in opening posts, followed by Emotional Support, where people expressed their grief-related feelings. In responding comments, Emotional Support and Informational Support were predominantly offered. CONCLUSION: While not a substitute for appropriate medical care, people impacted by miscarriage seek and offer support online. Health professionals should be aware of this behaviour and discuss potential benefits and risks of online support with patients. A social support framework may usefully guide health professionals in identifying patients' support needs and in knowing how to support patients.

Artificial Intelligence-Based Co-Facilitator (AICF) for Detecting and Monitoring Group Cohesion Outcomes in Web-Based Cancer Support Groups: Single-Arm Trial Study.

BACKGROUND: Commonly offered as supportive care, therapist-led online support groups (OSGs) are a cost-effective way to provide support to individuals affected by cancer. One important indicator of a successful OSG session is group cohesion; however, monitoring group cohesion can be challenging due to the lack of nonverbal cues and in-person interactions in text-based OSGs. The Artificial Intelligence-based Co-Facilitator (AICF) was designed to contextually identify therapeutic outcomes from conversations and produce real-time analytics. OBJECTIVE: The aim of this study was to develop a method to train and evaluate AICF's capacity to monitor group cohesion. METHODS: AICF used a text classification approach to extract the mentions of group cohesion within conversations. A sample of data was annotated by human scorers, which was used as the training data to build the classification model. The annotations were further supported by finding contextually similar group cohesion expressions using word embedding models as well. AICF performance was also compared against the natural language processing software Linguistic Inquiry Word Count (LIWC). RESULTS: AICF was trained on 80,000 messages obtained from Cancer Chat Canada. We tested AICF on 34,048 messages. Human experts scored 6797 (20%) of the messages to evaluate the ability of AICF to classify group cohesion. Results showed that machine learning algorithms combined with human input could detect group cohesion, a clinically meaningful indicator of effective OSGs. After retraining with human input, AICF reached an F1-score of 0.82. AICF performed slightly better at identifying group cohesion compared to LIWC. CONCLUSIONS: AICF has the potential to assist therapists by detecting discord in the group amenable to real-time intervention. Overall, AICF presents a unique opportunity to strengthen patient-centered care in web-based settings by attending to individual needs. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/21453.

PatientsLikeMe and Online Patient Support Communities in Dermatology.

Online patient-oriented platforms such as PatientsLikeMe (PLM) offer a venue for individuals with various diagnoses to share experiences and build community, though they may not be representative of the larger patient population. This potentially limits generalizability and raises concerns about the spread of misinformation, emphasizing the need for informed use and health care provider engagement.

Digitally Enabled Peer Support and Social Health Platform for Vulnerable Adults With Loneliness and Symptomatic Mental Illness: Cohort Analysis.

This study prospectively evaluated the effects of digitally enabled peer support on mental health outcomes and estimated medical cost reductions among vulnerable adults with symptomatic depression, anxiety, and significant loneliness to address the mental health crisis in the United States.

Utilization of Face-to-Face Vestibular Support Groups: A Comparison to Online Group Participation.

OBJECTIVE: This study compared the utilization and outcomes of face-to-face (F2F) vestibular support groups and online support communities (OSC) for individuals with vestibular disorders. METHODS: We distributed a 31-question anonymous electronic survey through the Vestibular Disorders Association (VeDA) to F2F participants, categorizing user involvement in F2F, OSCs, or both and assessed impact on medical decision-making, psychosocial benefits, and goals achieved. RESULTS: The F2F cohort consisted of 97 individuals comprising primarily of non-Hispanic White women (mean age = 57 years, SD ± 14 years) with diagnoses including persistent postural-perceptual dizziness (19%), Meniere's disease (15%), and vestibular neuritis (13%). Most participants were diagnosed by an otolaryngologist (65%) and attended F2F meetings monthly or less frequently (78%). The OSC group comprised of 551 individuals, primarily of non-Hispanic White women, but was younger in age (mean age = 50 years, SD ± 13 years). OSC participants notably engaged more, with 36% participating on a daily basis and 32% multiple times a week. F2F participants were older (mean age 57 years vs 50 years, P < .001) and more commonly referred by medical professionals (22% F2F vs 6% OSC, P < .001). Both groups had similar achieved goals, including hearing from others with the same diagnosis (84% vs 89%, P > .05) and similar impact on medical decision-making (75% vs 78%, P > .05). More F2F participants reported increased development of coping skills (79% F2F vs 69% OSC, P = .037). OSC participants typically found the group via an online search (75%), compared to 51% for F2F. OSC participants had higher daily engagement (36%) compared to F2F (1%). CONCLUSION: F2F users are older and more commonly referred by medical professionals. Despite less frequent engagement, F2F participants reported similar influences on achieved goals, medical decision-making, and impact on psychosocial benefits. These findings highlight the importance of both F2F and OSC support groups for individuals with vestibular disorders.

A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study.

BACKGROUND: Care partners of people with serious illness experience significant challenges and unmet needs during the patient's treatment period and after their death. Learning from others with shared experiences can be valuable, but opportunities are not consistently available. OBJECTIVE: This study aims to design and prototype a regional, facilitated, and web-based peer support network to help active and bereaved care partners of persons with serious illness be better prepared to cope with the surprises that arise during serious illness and in bereavement. METHODS: An 18-member co-design team included active care partners and those in bereavement, people who had experienced serious illness, regional health care and support partners, and clinicians. It was guided by facilitators and peer network subject-matter experts. We conducted design exercises to identify the functions and specifications of a peer support network. Co-design members independently prioritized network specifications, which were incorporated into an early iteration of the web-based network. RESULTS: The team prioritized two functions: (1) connecting care partners to information and (2) facilitating emotional support. The design process generated 24 potential network specifications to support these functions. The highest priorities included providing a supportive and respectful community; connecting people to trusted resources; reducing barriers to asking for help; and providing frequently asked questions and responses. The network platform had to be simple and intuitive, provide technical support for users, protect member privacy, provide publicly available information and a private discussion forum, and be easily accessible. It was feasible to enroll members in the ConnectShareCare web-based network over a 3-month period. CONCLUSIONS: A co-design process supported the identification of critical features of a peer support network for care partners of people with serious illnesses in a rural setting, as well as initial testing and use. Further testing is underway to assess the long-term viability and impact of the network.

Thematic Analysis of Alzheimer's Medication Management Discussion in a Non-Moderated Online Forum.

BACKGROUND: Managing medications for Alzheimer's disease and related dementias is challenging for caregivers. Information about caregivers' strategies to manage these challenges is needed to inform intervention development. OBJECTIVE: This study aimed to understand caregivers' medication management experiences by analyzing online community discussions. METHODS: Posts were extracted from the ALZConnected® Forum using keywords "medication" and "drug" via web scraping. The researchers applied thematic analysis. RESULTS: Four major themes emerged: (1) role transition of medication management responsibilities, (2) caregivers' uncertainty about medication purpose and values, (3) conflicts between the care recipients and caregivers, and (4) difficulty accessing and affording medications. CONCLUSIONS: The experiences shared on a non-moderated, unstructured online forum indicate that medication management is challenging and overwhelming for caregivers of people living with Alzheimer's disease and related dementias. Since this is a progressive disease with various stages and changing needs, caregivers' strategies vary and are often limited by available resources and support. Health care providers should offer training and support for caregivers to navigate the transfer of medication management responsibilities and changing care needs as the disease progresses.

Cosmetic Medical Tourists' Use of Online Support Communities: Sharing Information, Reciprocity, and Enduring Relationships.

Cosmetic procedures are amongst the most popular procedures sought after by medical tourists. Cosmetic medical tourists utilise numerous sources of information when planning their trips including, where available, discussing their decision with previous medical tourists. Current research on online support communities has investigated the interactions of patients with various health conditions with online support; however, limited research exists on cosmetic medical tourists' participation in online support communities. Here we report findings from our qualitative interview study of Australian cosmetic medical tourists. We found that many of our participants experienced stigma regarding their intention to receive cosmetic procedures and to travel overseas from within their local social networks. Participating in online communities (Facebook groups) enabled them to access information and support from other cosmetic medical tourists. Through using public posting and messaging functionality of the communities, they performed two distinct roles in the groups that parallel the temporal transitions of their journeys: they were information and support seekers pre-surgery and information and support providers post-surgery. The reciprocity they practiced in the provider role occurred due to their desire to 'pay forward' the support they had received from others pre-surgery. This role was performed as a collective, community-based reciprocity rather than a direct mutual exchange. Some participants also transitioned their online relationships into enduing offline friendships demonstrating how online interactions may become enmeshed with broader social networks.

Content analysis of patient support groups related to myositis on Facebook.

INTRODUCTION: Idiopathic inflammatory myopathies (IIM) are heterogeneous and complex, and routine consultation can be overwhelming for patients, or sometimes so rushed that patients feel unable to discuss their needs and wishes adequately. As a result, online patient support groups (PSGs) on social media platforms like Facebook may help provide them with information they are seeking, and the support of the patient community who are living with this condition. Our goal is to explore the current landscape of PSGs in IIM to discuss the future of such groups and their role in supporting patient-driven self-management of complex connective tissue diseases. METHODS: We investigated factors that influence engagement in publicly accessible support groups on Facebook for patients with myositis. We analysed posts from myositis-related Facebook groups and pages between July 10, 2022, and October 2022. Data were extracted from each post, including presentation format (text, picture, video or mixed media) and content type (news, personal feelings or information). To gauge the post's impact, we measured engagement metrics, such as likes, comments, shares and reactions. RESULTS: Nearly three-quarters of the groups were private. Among the open ones, most posts seem to comprise pictures with text. Notably, engagement levels were higher for multimedia posts, with the exception of comments in groups, where engagement was comparatively lower. In terms of content, the majority of posts fell under the 'personal' category, followed by 'information' and 'news' posts, with information posts in groups receiving the most interactions. Moreover, groups exhibited higher total engagement compared to pages when considering all posts cumulatively. CONCLUSIONS: Our observations indicate that patients with myositis seek information on the condition online, and the multimedia nature of content presentation significantly influences engagement. These digital forums serve as valuable platforms for fostering connections among diverse individuals, providing a perceived safe space for sharing their personal experiences and varied perspectives, and potentially mitigating social isolation. Key Points • Patient support groups on myositis are a key source of support and information for patients. • Public posts with multimedia content garner the most engagement. • The majority of posts are personal in nature, with a smaller proportion of content providing news or information.

Clinical Characteristics of Healthcare Workers Attended to a Mental Health Support Line in the Very Early Phase of COVID-19 Pandemic.

Introduction: This study aimed to analyze and report findings from the sessions conducted with healthcare workers during the early phase of COVID-19 pandemic. Method: The study sample consisted of 130 healthcare workers who have consecutively reached out to nationwide psychosocial support line within the first ten days of COVID-19 pandemic and had a 30-minute video session and received psychological first aid and were evaluated using a socio-demographic data form. Mental state severity and progress were assessed using CGI (clinical global impressions) at the first and follow-up interviews. Results: 90.4% of the applicants were female, 50.4% were nurses, 34.4% were doctors, 68.8% were frontline workers, whereas second-line healthcare workers had significantly higher rates of psychiatric illness history. Contracting the virus (n=83, 66.4%), infecting others (n=72, 57.6%) were the situations that caused the highest level of anxiety. Most common psychiatric complaints were anxiety (n=107, 85.6%), restlessness (n=80, 64%), fear (n=72, 64.0%) and insomnia (n=68, 57.6%). A second session was conducted with 36.8% (n=46) of the callers, and it was detected that 93.48% (n=43) of them were able to manage their stress and 33 of them reported that the severity of their complaints decreased. Conclusion: Our findings have shown that healthcare workers were significantly affected in the early stage of COVID-19 pandemic with a significant level of anxiety and insomnia symptoms. Healthcare workers with a history of psychiatric illness should be considered as a vulnerable group regardless of their position.

Online Support Groups for Family Caregivers: Scoping Review.

BACKGROUND: Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. OBJECTIVE: This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. METHODS: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. RESULTS: In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. CONCLUSIONS: There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.

How People With a Bipolar Disorder Diagnosis Talk About Personal Recovery in Peer Online Support Forums: Corpus Framework Analysis Using the POETIC Framework.

Background: Personal recovery is of particular value in bipolar disorder, where symptoms often persist despite treatment. We previously defined the POETIC (Purpose and Meaning, Optimism and Hope, Empowerment, Tensions, Identity, Connectedness) framework for personal recovery in bipolar disorder. So far, personal recovery has only been studied in researcher-constructed environments (eg, interviews and focus groups). Support forum posts can serve as a complementary naturalistic data resource to understand the lived experience of personal recovery. Objective: This study aimed to answer the question "What can online support forum posts reveal about the experience of personal recovery in bipolar disorder in relation to the POETIC framework?" Methods: By integrating natural language processing, corpus linguistics, and health research methods, this study analyzed public, bipolar disorder support forum posts relevant to the lived experience of personal recovery. By comparing 4462 personal recovery-relevant posts by 1982 users to 25,197 posts not relevant to personal recovery, we identified 130 significantly overused key lemmas. Key lemmas were coded according to the POETIC framework. Results: Personal recovery-related discussions primarily focused on 3 domains: "Purpose and meaning" (particularly reproductive decisions and work), "Connectedness" (romantic relationships and social support), and "Empowerment" (self-management and personal responsibility). This study confirmed the validity of the POETIC framework to capture personal recovery experiences shared on the web and highlighted new aspects beyond previous studies using interviews and focus groups. Conclusions: This study is the first to analyze naturalistic data on personal recovery in bipolar disorder. By indicating the key areas that people focus on in personal recovery when posting freely and the language they use, this study provides helpful starting points for formal and informal carers to understand the concerns of people diagnosed with a bipolar disorder and to consider how to best offer support.

Demographic and Support Interest Differences Among Nonbirthing Parents Using a Digital Health Platform With Parenthood-Related Anxiety: Cross-Sectional Study.

Background: The transition to parenthood is a period of major stressors and increased risk of anxiety for all parents. Though rates of perinatal anxiety are similar among women (4%-25%) and men (3%-25%), perinatal anxiety research on nonbirthing partners remains limited. Objective: We aimed to examine whether demographic characteristics or digital perinatal support preferences differed among nonbirthing partners with compared to without self-reported high parenthood-related anxiety. Methods: In this large cross-sectional study of nonbirthing partners using a digital perinatal health platform during their partner's pregnancy, users reported their parenthood-related anxiety through a 5-item Likert scale in response to the prompt "On a scale of 1=None to 5=Extremely, how anxious are you feeling about parenthood?" High parenthood-related anxiety was defined as reporting being very or extremely anxious about parenthood. During the onboarding survey, in response to the question "Which areas are you most interested in receiving support in?" users selected as many support interests as they desired from a list of options. Chi-square and Fisher exact tests were used to compare demographic characteristics and support interests of nonbirthing partners with low versus high parenthood anxiety. Logistic regression models estimated the odds ratios (ORs), with 95% CIs, of high parenthood-related anxiety with each user characteristic or digital support interest. Results: Among 2756 nonbirthing partners enrolled in the digital platform during their partner's pregnancy, 2483 (90.1%) were men, 1668 (71.9%) were first-time parents, 1159 (42.1%) were non-Hispanic White, and 1652 (50.9%) endorsed an annual household income of >US $100,000. Overall, 2505 (91.9%) reported some amount of parenthood-related anxiety, and 437 (15.9%) had high parenthood-related anxiety. High parenthood-related anxiety was more common among non-White nonbirthing partners: compared to those who identified as non-Hispanic White, those who identified as Asian, Black, or Hispanic had 2.39 (95% CI 1.85-3.08), 2.01 (95% CI 1.20-3.23), and 1.68 (95% CI 1.15-2.41) times the odds of high parenthood-related anxiety, respectively. Lower household income was associated with increased odds of reporting high parenthood anxiety, with the greatest effect among those with annual incomes of US $100,000 (OR 2.13, 95% CI 1.32-3.34). In general, nonbirthing partners were interested in receiving digital support during their partner's pregnancy, but those with high parenthood-related anxiety were more likely to desire digital support for all support interests compared to those without high parenthood anxiety. Those with high parenthood-related anxiety had more than 2 times higher odds of requesting digital education about their emotional health compared to those without high parenthood-related anxiety (OR 2.06, 95% CI 1.67-2.55). Conclusions: These findings demonstrate the need for perinatal anxiety-related support for all nonbirthing partners and identify nonbirthing partners' demographic characteristics that increase the odds of endorsing high parenthood-related anxiety. Additionally, these findings suggest that most nonbirthing partners using a digital health platform with high parenthood-related anxiety desire to receive perinatal mental health support.

An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community.

Objective: To characterize the users of the largest chronic rhinosinusitis (CRS) online support communities (OSCs), describe the perceived benefits of OSCs for their users, and understand how patient medical decision making is affected by membership in OSCs. Study Design: Cross-sectional online survey. Setting: Online. Methods: A cross-sectional online survey was adapted from the existing literature on patient support groups and modified for CRS patients. The survey was posted on multiple Facebook/Reddit groups aimed at providing support toward patients with CRS. Survey data was collected over 3 months and analyzed thereafter. Results: There were 127 total participants. The majority were female (65.35%), white (76.98%), and the median age was 38 years. Just under half of patients had nasal polyps (48.67%) and 54.54% had undergone surgery. Many participants (69.42%) reported engaging in the OSC at least multiple times per month. The most common reason for joining an OSC was to learn tips on how to manage CRS (89.7%) and the most achieved goal from membership was hearing from others undergoing a similar experience (79.5%). Involvement in an OSC impacted knowledge of CRS in 87.41% of participants. Most users (81.1%) would recommend membership in an OSC and 54.33% reported the OSC influenced their medical decision-making. Conclusion: A majority of patients with CRS who frequently engage in an OSC for CRS have a positive experience. OSCs are a resource that CRS patients utilize to manage their disease.

Head and Neck Cancer Online Support Groups: Disparities in Participation and Impact on Patients.

Objective: To characterize the users of the head and neck cancer (HNC) online support group (OSG) and describe the perceived benefits of membership. Study Design: Cross-sectional. Setting: Online. Methods: An administered survey with questions asking about demographics, cancer history, treatment choices, and feelings about OSGs was posted on the 5 largest HNC OSGs on Facebook. Results: A total of 97 participants completed the survey. Mean age was 57.8 years old (standard deviation = 10.7 years). Most participants were female (50.5%) and Caucasian (92.8%). This cohort was well educated with 65.5% holding at least a college degree. Annual income was high with 41.8% reporting annual income of $100,000 or greater. The most common treatment modality was radiation (88.7%). The most common surgery was neck dissection (46.4%). Most participants preferred OSGs (70.8%) over other support group types. OSGs were heavily utilized with our cohort reporting using the OSG at least several times a week (80.0%). The top reasons for joining the OSG were sharing one's experience of HNC (76.3%) and gaining support from others with HNC (85.6%). OSGs were ranked as the #3 source of medical information for HNC behind otolaryngologists and oncologists. Membership in a HNC OSG had a minimal impact on decision-making. Conclusion: HNC OSGs appear to provide a beneficial community for HNC patients. Otolaryngologists should consider incorporating HNC OSG as a possible supplemental resource for their HNC patients.

'Feel like going crazy': Mental health discourses in an online support group for mothers during COVID-19.

COVID-19 has become a mental health pandemic. The impact on vulnerable demographic groups has been particularly severe. This paper focuses on women in employment in Hong Kong who have had to balance remote work and online schooling for over 2 years. Using semi-ethnography and theme-oriented discourse analysis, we examine 200 threads that concern members' mental health on a popular Facebook support group for mothers. We demonstrate that mental health messages are typically framed as 'troubles talk'. Other support group members actively align with a trouble-teller through 'caring responses', namely expressions of empathy and sympathy. These are realized through assessments of the trouble-teller's experience, reports of similar experiences; expressions of compassion and advice-giving. Mental health talk online is heavily mitigated, nevertheless the medium provides a space for expressing mental health troubles and providing informal psychosocial support. We advocate the importance of microanalytic discourse studies for mental health research to get insights into people's lived experiences during the pandemic.