Online Support Communities Research Articles

Different Deeds, Different Needs—Types of Violence Against Women and Social Support Sought Online

Women, as victims of violence, among which intimate partner violence prevails, venture online to seek a supportive community. Members of online support groups differ in the experiences and needs they have and support they seek. The objective of this research was to explore the difference in types of support sought and support received between women who self-report having been a witness/victim of violence and others who directly ask for help without explaining their circumstances. For this purpose, content analysis of 600 randomly selected starting posts from an online support community was performed. The results reveal an association between the needs expressed and the experience of violence described. Although users most frequently sought informational support, those recounting sexual violence more often asked for emotional support or were looking for an emotional release. Posts describing a different kind of violence were more likely to bring more support than short posts directly asking for help. The findings are important since women in a violent relationship tend to become more isolated or controlled by their partners, pointing to the crucial role of online support in helping and encouraging those women to take the first step in seeking help from formal institutions.

Descriptive and content analysis of breast cancer vlogs on YouTube.

258 Background: Vlogs, or “video blogs,” are personally-created experiential videos based on wide-ranging topics, usually posted to YouTube. Many women with breast cancer (BC) document their cancer experiences in YouTube vlogs. These may have the potential to serve as peer-to-peer support and provide community. This study provides a descriptive and content analysis of vlogs by women with BC. Methods: YouTube was searched in incognito mode in 11/2023 using the search terms “breast cancer vlog.” A maximum of 10 videos/creator were included based on viewership and date created.Video characteristics collected included: title, length, number of views, likes, comments, and playlist inclusion. Videos were assessed for sponsorship, presence of explanation and discussion on BC, type of content, and themes. Creator characteristics included age, location, and engagement approaches. Descriptive and content analysis were performed to assess and analyze video content and potential areas where peer-to-peer support may be provided. Results: 90 vlogs by 13 creators were included, all originating from personal accounts. Mean video length, number of views, and number of comments were 21.4 minutes (SD 9.1), 266,780 (SD 534,465), and 1485 (SD 3422), respectively. 38.9% included hashtags. 12.2% included paid sponsorships. Most common filming location was at home (96.7%), followed by the hospital (31.1%), or in the car (21.1%). Home vlogs were most often set in the living room (44.3%), bedroom (33.0%), or kitchen (20.6%). 56.7% included visuals of treatment as well as physical findings. Creators addressed motivation for vlogging in 48.9%; the two most common reasons were wanting to build a community and helping others in a similar situation. In 46.7%, creators explicitly expressed emotion. Most common themes were treatment (85.6%), mental health (81.1%), side effects (72.2%), appearance (63.3%), and family relationships (36.7%). Subthemes included young age, finances, and the importance of online community support. Patient-directed advice was offered in 60.0%, mostly on treatment-related issues. In 56.7%,creators provided explicit treatment definitions. Chemotherapy was discussed in 70.0%; surgery in 57.8%, primarily mastectomy; radiation in 30.0%; general side effects in 71.1%. 24.4% were about a new diagnosis. When mentioned (44.4%), most common creator location was the USA. When mentioned (30.0%), most common age demographic was 20-29 years old. Conclusions: Vlogs by women with BC receive significant levels of engagement. The dedication to building community demonstrated by vlog creators, and the personal nature of their storytelling, advice, and suggestions, may make these vlogs a potential resource for peer-to-peer support.

Examining support marshalling within an asynchronous online peer support forum for individuals affected by dementia.

Online support communities may provide individuals affected by dementia opportunities for reciprocal peer support, however, the support marshalling strategies employed and their success remain unclear. Analysis of 100 randomly selected conversation threads from the Dementia Support Forum indicated that 29% (29/100) of opening posts included a direct support marshalling strategy (i.e. explicit support request) compared with 54% (54/100) labelled as indirect, with the remainder not seeking support. Within the direct marshalling posts, informational support was the most frequently requested (n = 23), followed by network support (n = 7), emotional support (n = 5) and esteem support (n = 1) with analysis of subsequent posts confirming that the types of support requested were present within responses. Regardless of whether a direct or indirect strategy was used, most posts received a response, typically on the same day. Other response facets were comparable, apart from thread duration with conversations elicited through a direct strategy being longer (M = 39.71 vs 14.62 days).

The Role of Mental Health Literacy in Shaping Help-Seeking Behaviors among High School Students in Vietnam

Background: Mental health issues, such as stress, anxiety, and depression, are becoming more common among high school students, yet cultural stigma and inadequate mental health literacy impede effective help-seeking in Vietnam. Adolescents sometimes encounter obstacles in identifying mental health issues and obtaining suitable resources, particularly in environments where professional services are inadequate and mental health is stigmatized. Purpose: This study aims to address the comprehension of mental health awareness and help-seeking behaviors among Vietnamese high school students. Methods: The study involved 422 high school students from four cities in Vietnam. The Depression Anxiety Stress Scales (DASS-21) and Mental Health Literacy Scale (MHLS) were employed to evaluate mental health awareness and behavior, with data processed utilizing SPSS version 22.0. Result: Students exhibited the greatest awareness of bipolar disorder (M = 4.43, SD = 0.844). Students experience a moderate to high level of anxiety when they become aware of potential mental health issues (M = 3.50, SD = 1.296). In order of priority, students actively seek information about mental health professionals (M = 3.88, SD = 0.645). Students are highly critical and thoughtful in comparing different sources of advice before deciding on a mental health strategy (M = 4.27, SD = 0.925). Students are slightly more likely to participate in these programs compared to other formal mental health resources (M = 1.44, SD = 0.469). Some students turn to online communities for support and guidance in managing their mental health issues (M = 1.63, SD = 0.483). Conclusion: This investigation underscores numerous critical developments in the mental health awareness and help-seeking behaviors of students in high schools. Students exhibited a deliberate approach to evaluating mental health resources and a strong awareness of bipolar disorder.

Challenges of Creating a Peer Support Online Community for Patients With Diabetes-A Case Study.

This study aims to explore the challenges and strategies in creating online communities for individuals with diabetes, emphasizing their role in fostering connections among individuals facing similar health conditions. Using a single-case approach, we investigated the design process of a diabetes online community using the classic waterfall model. Participants were recruited from a diabetes local association, and usability was assessed using the System Usability Scale and the think-aloud method. Subsequently, semistructured interviews were conducted to evaluate functionality and user experience. Data collection was conducted from August until December 2023. The development of the community unveiled significant usability challenges, highlighting the need for user feedback and improvement. Ethical considerations, including anonymity, usage conditions, privacy terms, and health information sharing, emerged as critical areas requiring meticulous attention. Furthermore, healthcare professional moderation was deemed essential to ensure a secure environment. Users expressed strong interest in enhanced interaction features and personalized notifications. Although online diabetes communities hold potential for peer support, addressing usability challenges, ethical considerations, and moderation issues is essential. This study emphasizes the ongoing necessity for research to enhance the development of patient communities, ensuring accessibility, mitigating ethical risks, and leveraging nurses as moderators.

You’re doing it wrong: the governance of motherhood through mommy blogs

ABSTRACT Mommy blog communities have been established by mothers who publish their stories online with the stated purpose to empower themselves and their peers by offering a seemingly unfiltered representation of motherhood. While this benefit has been felt by many readers, there are invisible governing discourses that have prevented such blogs from becoming authentic spaces of resistance to the hegemonic ideals of motherhood. To understand the governing forces placed upon mothers through “mommy blogs,” we explored the question: How is motherhood shaped through narratives (re)presented in mommy blogs? Critical discourse analysis, informed by a governmentality perspective, was used to analyze mommy blog entries to illuminate representations of power and knowledge within the blog entries. The findings suggest that a governmentality perspective is useful in understanding how mommy blogs enact power over mothers using mechanisms of governance through 1) sameness and imperfection, 2) perceived self-compassion, 3) advice and support, and 4) the scientification of motherhood. As more people turn to online communities for support with the experience of mothering, it is important to garner a critical understanding of how mommy blogs continue to influence contemporary experiences of motherhood.

X (Twitter): A Protective Platform for Personal Revelations Among Indonesian LGBTQ Adolescents

Social media provides a protective space for LGBTQ adolescents to share their experiences and self-disclosures. Digital platforms such as X (Twitter) offer an environment that is distinct and more open compared to the conservative attitudes commonly found in traditional societies. However, not all social media platforms provide a safe space for LGBTQ adolescents to openly share their identities and personal experiences, highlighting an urgent need to create safer and more educational digital spaces. This study employs a qualitative research design with a phenomenological approach to understand the self-disclosure experiences of LGBTQ adolescents on the X platform. The findings reveal that the X platform plays a crucial role in supporting the self-disclosure of LGBTQ adolescents in Indonesia. The motivations for self-disclosure include the desire to acquire and disseminate knowledge, personal expression, self-acceptance, and involvement in LGBTQ movements and groups. The feedback received in self-disclosure encompasses positive responses such as acceptance and recognition, as well as negative responses such as rejection and exclusion. The consequences of self-disclosure are divided into internal benefits, such as self-actualization and increased self-esteem, and external benefits such as social connections and recognition from the community. This study provides insights for social media platform developers to create more inclusive and supportive environments, despite limitations related to sample size and other factors that may influence the results. Future research is recommended to expand the sample size and explore the long-term impacts of online community support on the well-being of LGBTQ adolescents.

Cosmetic medical tourists’ use of online and offline experiential and procedural information resources in decision-making: Implications for digital health literacy and neoliberalism

Background: When deciding to undergo aesthetic health procedures overseas, cosmetic medical tourists access various information resources to make informed decisions about locations, facilities, health providers and procedure(s). Aim: Existing research has investigated the different resources cosmetic tourists access in their decision-making process, however, there has yet to be an in-depth analysis of the significance of each information resource in this process. Methods: Interviews with Australian cosmetic tourists regarding how and why they decided to use specific information resources. Results: We found that cosmetic medical tourists simultaneously and repeatedly used four main information resources in their decision making – websites, existing social networks, online support communities and surgeon consultations. Discussion: We characterise these resources as offering both experiential and procedural information, both generalised (non-specific and available to everyone) and personalised (originating in individual experience or tailored to the individual) information and being located both online (internet-based) and offline (in-person). Successful accomplishment of the cosmetic medical tourist journey relies on engagement with most of these resources, highlighting the role of digital health literacy and the complexity of this decision-making process. Conclusions: This process has implications for understanding the practice of digital health literacy and identifiably positions cosmetic medical tourists as neoliberal individuals.

Descriptive and content analysis of breast cancer vlogs on YouTube.

18 Background: Vlogs, or “video blogs,” are personally-created experiential videos based on wide-ranging topics, usually posted to YouTube. Many women with breast cancer (BC) document their cancer experiences in YouTube vlogs. These may have the potential to serve as peer-to-peer support and provide community. This study provides a descriptive and content analysis of vlogs by women with BC. Methods: YouTube was searched in incognito mode in 11/2023 using the search terms “breast cancer vlog.” A maximum of 10 videos/creator were included based on viewership and date created. Video characteristics collected included: title, length, number of views, likes, comments, and playlist inclusion. Videos were assessed for sponsorship, presence of explanation and discussion on BC, type of content, and themes. Creator characteristics included age, location, and engagement approaches. Descriptive and content analysis were performed to assess and analyze video content and potential areas where peer-to-peer support may be provided. Results: 90 vlogs by 13 creators were included, all originating from personal accounts. Mean video length, number of views, and number of comments were 21.4 minutes (SD 9.1), 266,780 (SD 534,465), and 1485 (SD 3422), respectively. 38.9% included hashtags. 12.2% included paid sponsorships. Most common filming location was at home (96.7%), followed by the hospital (31.1%), or in the car (21.1%). Home vlogs were most often set in the living room (44.3%), bedroom (33.0%), or kitchen (20.6%). 56.7% included visuals of treatment as well as physical findings. Creators addressed motivation for vlogging in 48.9%; the two most common reasons were wanting to build a community and helping others in a similar situation. In 46.7%, creators explicitly expressed emotion. Most common themes were treatment (85.6%), mental health (81.1%), side effects (72.2%), appearance (63.3%), and family relationships (36.7%). Subthemes included young age, finances, and the importance of online community support. Patient-directed advice was offered in 60.0%, mostly on treatment-related issues. In 56.7%, creators provided explicit treatment definitions. Chemotherapy was discussed in 70.0%; surgery in 57.8%, primarily mastectomy; radiation in 30.0%; general side effects in 71.1%. 24.4% were about a new diagnosis. When mentioned (44.4%), most common creator location was the USA. When mentioned (30.0%), most common age demographic was 20-29 years old. Conclusions: Vlogs by women with BC receive significant levels of engagement. The dedication to building community demonstrated by vlog creators, and the personal nature of their storytelling, advice, and suggestions, may make these vlogs a potential resource for peer-to-peer support.

Mothers' experience seeking healthcare advice for their unsettled infants in Victoria, Australia.

Unsettled infant behaviours are highly prevalent in the postnatal period and constitute a significant proportion of visits to healthcare services. Unsettled infant behaviours can be highly distressing for parents and are identified as a significant risk factor for postnatal depression. Understanding parents' experiences is paramount to reducing the gap between consumer expectations and service delivery. This study employed a qualitative descriptive approach to explore parents' experiences seeking healthcare advice for their infant with unsettled behaviours. Semi-structured interviews were conducted with 20 mothers. Inductive thematic analysis yielded two overarching themes: (1) 'the journey for answers', consisting of five sub-themes, and (2) 'parents' knowledge and behaviours', consisting of six sub-themes. Despite some positive interactions with healthcare services, mothers generally spoke negatively of their overall experience seeking answers and receiving care for their infant, and they felt the healthcare services they attended were not equipped to meet their needs. To address the gap between service delivery and consumer expectations, mothers relied on online communities for advice and emotional support. The findings of this study highlight several discrepancies between mothers' expectations and service delivery in the context of unsettled infant behaviours, and this paper makes recommendations to address identified shortcomings in approaches to care.

Working knowledge, uncertainty and ontological politics: An ethnography of UK long covid clinics.

Long covid (persistent COVID-19) is a new disease with contested aetiology and variable prognosis. We report a 2-year ethnography of UK long covid clinics. Using a preformative lens, we show that multidisciplinary teams (MDTs) built working knowledge based on shared practices, mutual trust, distributed cognition (e.g. emails, record entries), relational knowledge of what was at stake for the patient, and harnessing uncertainty to open new discursive spaces. Most long covid MDTs performed the working knowledge of 'rehabilitation', a linked set of practices oriented to ensuring that the patient understood and strove to 'correct' maladaptive physiological responses (e.g. through breathing exercises) and pursued recovery goals, supported by physiotherapists, psychologists and generalist clinicians. Some MDTs with a higher proportion of doctors (e.g. cardiologists, neurologists, immunologists) enacted the working knowledge of 'microscopic damage', seeking to elucidate and rectify long covid's underlying molecular and cellular pathology. They justified non-standard investigations and medication in selected patients by co-constructing an evidentiary narrative based on biological mechanisms. Working knowledge was ontologically concordant within MDTs but sometimes discordant between MDTs. Overt ontological conflict occurred mostly when patients attending 'rehabilitation' clinics invoked the working knowledge of microscopic damage that had been generated and circulated in online support communities.

P-473 Assessing patient perceptions: emotional support and clinic culture in fertility care. Examining changes in emotional support and clinic culture over 4 years

Abstract Study question How do patients perceive emotional support and clinic culture in the context of fertility care, what factors contribute to their overall experiences within fertility clinics? Summary answer Patients find clinic support lacking, rated 4.8/10, with <45% perceiving a supportive clinic culture. Despite increased awareness, emotional support perception declined from 2019 to 2023. What is known already Despite abundant research emphasising the necessity of psychosocial care in fertility treatment, notably by ESHRE, patients’ experiences indicate clinics are not consistently following these guidelines or offering sufficient emotional support. UK studies by the Human Fertilisation and Embryology Authority and Fertility Network emphasise the genuine emotional toll of fertility treatment, revealing that 40% of women undergoing treatment have experienced suicidal thoughts. These findings underscore the critical need for robust emotional support throughout the treatment journey. Study design, size, duration This study involved surveying 210 respondents undergoing fertility treatment. Employing an online survey format, disseminated within my online support communities (approx. 7,000 individuals), the study incorporated both qualitative and quantitative questions. Responses were collected across two distinct periods, 2019 and 2023, providing a comprehensive understanding of patients’ emotional experiences over the 4-year interval. Participants/materials, setting, methods The study gathered insights from 210 global respondents (97% receiving treatment in the UK, 3% in Europe and the USA), all participants were fertility patients undergoing treatment. Cohorts were surveyed in 2019 and 2023, responding to a 10-question online survey. This design enabled a comprehensive exploration of diverse perspectives on emotional support within fertility care over the specified 4-year period. Main results and the role of chance The study reveals a significant disparity between perceived and actual emotional support in fertility clinics. Despite clinics asserting excellence in support, patients rated the emotional support they received at 4.8 out of 10. An alarming 58% expressed scepticism about their clinic fostering a culture of support embraced by all staff, showcasing a disconnect between clinic claims and patient experiences. The study determined a decline in perceived support levels from 2019 to 2023, from 5.3/10 in 2019 to 4.6/10 in 2023. This downward trend raises concerns about the efficacy of efforts to enhance emotional support over the years despite an escalating focus and awareness surrounding the emotional challenges of fertility treatment. The participants’ qualitative responses unveiled a recurring theme across 2019 and 2023, indicating a persistent lack of improvement in emotional support. Patients felt like part of a production line, reduced to mere numbers in the clinic during their treatment journey. A resounding 66% of respondents expressed a desire for more accessible support services within their clinics. This study’s comprehensive findings shed light on the critical need for clinics to re-evaluate and fortify their emotional support infrastructure, ensuring it aligns with patient expectations and contributes positively to their overall experience. Limitations, reasons for caution Differences in participant demographics over study years may influence individual perspectives. Feedback could be influenced by participants’ mood on the survey day, and the global online distribution encompassing diverse clinics adds variability to responses. Wider implications of the findings The study reveals a gap in emotional support provision despite extensive research on IVF’s emotional impact. Patients hesitate to voice concerns, contributing to treatment dropout rates. Addressing this, the study suggests guidelines to help clinics establish a supportive culture from initial contact, potentially reducing dropout rates and improving patient experiences. Trial registration number not applicable

P-462 Exploring the potential of fertility clinics in the metaverse: opportunities, challenges, and ethical implications

Abstract Study question Could the integration of the metaverse enhance patient care in fertility clinics, and what are its potential challenges and ethical implications? Summary answer Integrating the metaverse into fertility care could enhance assisted reproduction, improving patient and provider experiences. However, it presents challenges in privacy, accessibility, and ethical implications. What is known already The digital transformation in healthcare, accelerated by the COVID-19 pandemic, has underscored the potential of the metaverse in medical fields. Utilising technologies such as virtual reality (VR), augmented reality (AR), and mixed reality (MR), the metaverse offers significant opportunities for enhancing patient care, engagement, medical training, and support. Its applications across various medical disciplines demonstrate its capacity to improve healthcare experiences. However, the specific implementation of the metaverse in fertility clinics, aimed at meeting the distinct expectations of tech-savvy Millennials and Generation Z, and potentially enhancing patient experience, treatment efficacy, and support mechanisms, is yet to be explored. Study design, size, duration Conducted in November and December 2023, this systematic literature review ensured a focused and up-to-date analysis of the current applications and implications of the metaverse in healthcare. This review spanned major databases, leading ART journals, and pertinent industry reports. Over two months, 468 metaverse-related publications, from 2007-2024, were identified, with 81 addressing healthcare (2022-2024). However, only one paper specifically addressed ART in the context of IVF metaverse clinics, indicating a significant research gap. Participants/materials, setting, methods This study involved analysis of academic literature, industry reports, and real-world implementations to assess the metaverse’s current use in healthcare. Research keywords included ‘metaverse’, ‘healthcare’, ‘(in)fertility’ and ‘assisted reproduction’, focusing on present and potential metaverse applications in healthcare provision, advanced patient care technologies, innovative training methodologies, and practical uses in clinical settings. Additionally, it scrutinised challenges and ethical issues associated with metaverse technology and existing platforms, providing a comprehensive overview of its implications in healthcare. Main results and the role of chance Current applications of the metaverse in healthcare are evident in specialties such as urology, mental health, ophthalmology, chronic pain management, cancer, and paediatrics. Innovative technologies, including haptic tools and smart operating theatres, have enabled the development of complex surgical techniques and practices. Metaverse conferences featuring avatar delegates introduced a new dimension to professional interactions. Digital twins are used to simulate patient scenarios, enabling personalised treatment plans that improve the accuracy of diagnoses and treatments. In medical and nursing education, VR offers immersive, hands-on learning experiences. In the context of ART, the metaverse holds promise for enhancing telemedicine through AI-driven avatars, advanced patient monitoring, and haptic simulation training for procedures like egg collections, embryo transfer, and ICSI. Patients may experience immersive virtual tours of typically restricted laboratory areas, interact with digital representations of their embryos, and engage in immersive online support communities. However, significant challenges persist, including the maintenance of patient privacy, addressing technological disparities, and managing billing complexities in virtual environments. The study emphasises the critical importance of data privacy and security, particularly concerning the sensitivity of fertility-related information. Additionally, it raises questions about the authenticity of patient-provider interactions in a virtual setting and the potential for deepening digital divide. Limitations, reasons for caution The study’s limitations include a scarcity of literature on the metaverse in future fertility clinics, as evidenced by just one online paper addressing IVF metaverse clinics. This gap limits a comprehensive understanding of the metaverse’s applications in ART, and raises concerns about consistent and secure access to these emerging technologies. Wider implications of the findings This research highlights the transformative potential of the metaverse in fertility care, emphasising focused research, ethical considerations, and infrastructure development to harness its benefits. Highlighting the importance of navigating challenges such as data privacy, technological disparities, and regulatory frameworks to ensure optimal patient care in this evolving digital landscape. Trial registration number not-applicable

Descriptive and content analysis of breast cancer vlogs on YouTube.

e21016 Background: Vlogs, or “video blogs,” are personally-created experiential videos based on wide-ranging topics, usually posted to YouTube. Many women with breast cancer (BC) document their cancer experiences in YouTube vlogs. These may have the potential to serve as peer-to-peer support and provide community. This study provides a descriptive and content analysis of vlogs by women with BC. Methods: YouTube was searched in incognito mode in 11/2023 using the search terms “breast cancer vlog.” A maximum of 10 videos/creator were included based on viewership and date created. Video characteristics collected included: title, length, number of views, likes, comments, and playlist inclusion. Videos were assessed for sponsorship, presence of explanation and discussion on BC, type of content, and themes. Creator characteristics included age, location, and engagement approaches. Descriptive and content analysis were performed to assess and analyze video content and potential areas where peer-to-peer support may be provided. Results: 90 vlogs by 13 creators were included, all originating from personal accounts. Mean video length, number of views, and number of comments were 21.4 minutes (SD 9.1), 266,780 (SD 534,465), and 1485 (SD 3422), respectively. 38.9% included hashtags. 12.2% included paid sponsorships. Most common filming location was at home (96.7%), followed by the hospital (31.1%), or in the car (21.1%). Home vlogs were most often set in the living room (44.3%), bedroom (33.0%), or kitchen (20.6%). 56.7% included visuals of treatment as well as physical findings. Creators addressed motivation for vlogging in 48.9%; the two most common reasons were wanting to build a community and helping others in a similar situation. In 46.7%, creators explicitly expressed emotion. Most common themes were treatment (85.6%), mental health (81.1%), side effects (72.2%), appearance (63.3%), and family relationships (36.7%). Subthemes included young age, finances, and the importance of online community support. Patient-directed advice was offered in 60.0%, mostly on treatment-related issues. In 56.7%, creators provided explicit treatment definitions. Chemotherapy was discussed in 70.0%; surgery in 57.8%, primarily mastectomy; radiation in 30.0%; general side effects in 71.1%. 24.4% were about a new diagnosis. When mentioned (44.4%), most common creator location was the USA. When mentioned (30.0%), most common age demographic was 20-29 years old. Conclusions: Vlogs by women with BC receive significant levels of engagement. The dedication to building community demonstrated by vlog creators, and the personal nature of their storytelling, advice, and suggestions, may make these vlogs a potential resource for peer-to-peer support.

Perceptions and Utilization of Online Peer Support Among Informal Dementia Caregivers: Survey Study.

Informal dementia caregivers are those who care for a person living with dementia and do not receive payment (eg, family members, friends, or other unpaid caregivers). These informal caregivers are subject to substantial mental, physical, and financial burdens. Online communities enable these caregivers to exchange caregiving strategies and communicate experiences with other caregivers whom they generally do not know in real life. Research has demonstrated the benefits of peer support in online communities, but this research is limited, focusing merely on caregivers who are already online community users. We aimed to investigate the perceptions and utilization of online peer support through a survey. Following the Andersen and Newman Framework of Health Services Utilization and using REDCap (Research Electronic Data Capture), we designed and administered a survey to investigate the perceptions and utilization of online peer support among informal dementia caregivers. Specifically, we collected types of information that influence whether an informal dementia caregiver accesses online peer support: predisposing factors, which refer to the sociocultural characteristics of caregivers, relationships between caregivers and people living with dementia, and belief in the value of online peer support; enabling factors, which refer to the logistic aspects of accessing online peer support (eg, eHealth literacy and access to high-speed internet); and need factors, which are the most immediate causes of seeking online peer support. We also collected data on caregivers' experiences with accessing online communities. We distributed the survey link on November 14, 2022, within two online locations: the Alzheimer's Association website (as an advertisement) and ALZConnected (an online community organized by the Alzheimer's Association). We collected all responses on February 23, 2023, and conducted a regression analysis to identifyn factors that were associated with accessing online peer support. We collected responses from 172 dementia caregivers. Of these participants, 140 (81.4%) completed the entire survey. These caregivers were aged 19 to 87 (mean 54, SD 13.5) years, and a majority were female (123/140, 87.9%) and White (126/140, 90%). Our findings show that the behavior of accessing any online community was significantly associated with participants' belief in the value of online peer support (P=.006). Moreover, of the 40 non-online community caregivers, 33 (83%) had a belief score above 24-the score that was assigned when a neutral option was selected for each belief question. The most common reasons for not accessing any online community were having no time to do so (14/140, 10%) and having insufficient online information-searching skills (9/140, 6.4%). Our findings suggest that online peer support is valuable, but practical strategies are needed to assist informal dementia caregivers who have limited time or online information-searching skills.

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

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. 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. 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%). 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.

"I hate you. I love you. I'm sorry. I miss you." Understanding Online Grief Expression Through Suicide Bereavement Letter-Writing Practices

When bereaved individuals seek online support in response to the suicide of a loved one, their expressions of grief take many forms. Although the intense grief expressions individuals bereaved by suicide commonly share in private therapeutic settings can be helpful in healing from traumatic loss, these same expressions may potentially cause harm to others when shared in a public online support community. In this study, we present a qualitative analysis of letters posted on the r/SuicideBereavement subreddit, and comments replying to those posts, to explore what diverse expressions of grief additionally demand of platform design. We find that letter posts contain potentially harmful grief expressions that, in this community, generate mutual support among community members. Informed by our findings, this study considers the design challenges for online platforms as they simultaneously support users receiving support and healing through sharing certain grief expressions, while also supporting users who will be harmed by exposure to those grief expressions. Taking inspiration from offline therapy modalities, we consider the design implications of creating specialized online grief support spaces for diverse grief expressions.

Unraveling the Cross-Cultural Differences in Online Expression of Social Anxiety in Online Support Communities.

Individuals suffering from social anxiety disorder (SAD) are increasingly turning to online support communities for self-disclosure and social support. Despite the extensive body of research on online mental health discourses, the cultural nuances within SAD-related discussions remain underexplored. In this study, we examine the cultural differences in online expression of social anxiety by analyzing individuals' self-disclosure and support-seeking behaviors in social media posts. Using two-week data (n = 1,681) from two SAD support communities on the Reddit and Douban groups, we used both qualitative thematic analysis and quantitative semantic analysis to discern prevalent themes and linguistic attributes characterizing these online expressions. Our findings not only uncover common themes such as sharing personal experiences and seeking mutual validations in both communities but also identify their divergences, as Western users primarily sought advice and information in posts, whereas Chinese users were more inclined toward networking. Cultural variations in language use were evident, particularly in individuals' affect and their expression of personal and social concerns. Western users were more likely to convey negative emotions and delve into personal matters related to SAD, whereas Chinese users tended to grapple more with workplace anxieties. This study contributes to the cultural understanding of online mental health discourses and offers insights for crafting culturally sensitive interventions and supports for people with SAD.

Self-disclosure and received social support among women experiencing infertility on reddit: A natural language processing approach

The intricate interplay between self-disclosure strategies and the social support received has garnered limited scholarly attention. Guided by communication privacy management theory, the functional theory of self-disclosure, social support theory, and social penetration theory, this study seeks to delve deeper into this dynamic within the context of female infertility. Fertility challenges among women remain sensitive and veiled by societal silence, thereby compelling them to seek information and support through online channels. By leveraging natural language processing techniques, we examined 11,714 posts and 76,022 comments from the Subreddit IVF over a three-year period. Our investigation shows that online support forums provide a convenient and beneficial channel for women dealing with infertility issues to exchange information and express distress. However, a discrepancy exists between the types and intended functions of self-disclosure and the types of social support received. Posts aiming to clarify personal identities negatively predict the network support received. Moreover, disclosing thoughts in posts often fail to elicit esteem support in comments. The results highlight that online support communities exhibit inherent limitations in offering opportunities for sharing good news and seeking validation. These findings offer guidance to policymakers, practitioners, and the public in enhancing support for women experiencing challenges in childbearing.

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.