Online Support Communities Research Articles

Online Support Community Building: An Interpersonal Pragmatic Study of Medical Sharing Discourse

The online support community is composed of netizens who have experienced shared stressful events or diseases. Few studies have focused on the mechanism of online community maintenance and construction. New rapport management model, as the frontier theory of interpersonal pragmatics, can avoid the limited coverage of linguistic evidence in sociological or communication approach. Medical sharing discourse is the true-life recording of personal medical experience in online community. As a new type of health discourse, it has become the main source for Chinese people to attain medical information. With complex interactive roles and special interpersonal contexts, it can best reflect interlocutors’ awareness of community building. Based on new rapport management model, this study focuses on the medical sharing discourse in China’s biggest online community Red Booklet. The discourse model and its interpersonal function in community maintenance will be elaborated in detail. Results show that bloggers have specific language selection in five language domains. Bloggers’ proper manipulation of interests, emotion, face, rights and obligations and communicative objectives in interaction contributes to the construction of online community.

What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer.

Adolescents and young adults (AYAs) with advanced cancer identify maintaining a good quality of life (QoL) as a central goal of end-of-life care. QoL is a dynamic and subjective overarching concept that refers to an individual's relative satisfaction with their own life. Despite its importance to AYAs with advanced cancer, a patient-centered definition of QoL is lacking in this population. This qualitative secondary analysis of semistructured interviews was conducted across 3 institutions and 1 online support community among AYA patients with advanced cancer, family caregivers, and health care providers who cared for living or recently deceased AYAs. Interviewees were asked about priorities in receipt of care. Interviews were transcribed using NVivo software for primary analysis, and previously coded excerpts were screened for references to QoL. Relevant excerpts were sorted into organizing domains. Participants included 23 AYA patients, 28 family caregivers, and 29 health care providers (including physicians, nurses, nurse practitioners, social workers, and psychologists). Four domains of QoL were identified: psychosocial and physical well-being, dignity, normalcy, and personal and family relationships. Within each domain there was agreement across AYAs, caregivers, and health care providers, with nuanced perspectives provided by AYAs of different ages. Personal and family relationships was the most frequently referenced domain of QoL among all participants. A common feature of each domain was that adaptation to current circumstances impacted perspectives on QoL. Patients valued active participation in the development of a care plan that supported these domains. AYAs with advanced cancer, their caregivers, and health care providers agree on several broad domains of QoL in this population. To provide high-quality, patient-centered care, care plans should integrate these domains to enable AYAs to maximize their QoL throughout their advanced cancer care.

‘It's time to put the copes down and get to work’: a qualitative study of incel exit strategies on r/IncelExit

ABSTRACT Incels, the now-widely notorious community of involuntary celibate individuals, represent an emergent online subculture predominantly composed of young men who are dissatisfied with their inability to experience romance or become involved in sexual relationships with women regardless of their desire in doing so. Despite incels being commonly portrayed as upholding a fatalistic and inescapable ideology that promotes networked misogyny and violence, there exists a unique online Reddit forum called r/IncelExit that aims to support self-identifying incels who are considering leaving inceldom. By thematically analyzing the top 25 most-engaged forums on r/IncelExit, this research highlights how online community support can be mobilized to encourage, share, teach, and sustain concrete exit strategies for incels who want to move away from incel rhetoric and disengage from incel communities. Findings illustrate various avenues for exiting inceldom that together focus on working towards self-improvement, community involvement, and disruption of incel rhetoric – efforts that are sustained by the r/IncelExit community’s continued motivation and encouragement. Implications for countering violent extremism (CVE) approaches are provided. Seeing as most CVE approaches focus on education programs, psychosocial mediation, or criminal justice interventions, this research highlights a complementary CVE measure grounded in mutual aid, peer support, and inner-group collaborative encouragement.

Online sextortion: Characteristics of offences from a decade of community reporting

Online sextortion is an organised form of blackmail which can have a serious financial and traumatic impact on its victims. Responding to a dearth of evidence about this crime, this study analyses patterns within a large dataset of over 23,000 anonymous victim reports, collected via an online support community. Using common responses within these reports, this study identifies the most typical patterns of offending, including the profile assumed by offenders, the platforms through which the offence is initiated and enabled, payment methods and amounts demanded, and the national origins of most offences. Analysis shows that the mix of social media and dating platforms being used to approach and communicate with victims is changing over time, but the tactics employed by offenders are remarkably standardised. Payment demands involved in the crime were previously centralised in a few key service providers, but are increasingly diversifying. The variety of platforms involved in online sextortion points towards enforcement and safeguarding challenges, motivating an analysis of common risk factors that can inform the design of broadly-applicable countermeasures.

Abstract 290: Initial Engagement in a Novel Online Support Community for Cardiac Arrest Survivors, Co-Survivors, Lay Rescuers, and Advocates

Background: Cardiac arrest survivors often experience physical, cognitive, emotional, and social challenges that can linger for years. Co-survivors and lay rescuers can also experience distress. In 2023, Sudden Cardiac Arrest Foundation (SCAF) created the Cardiac Arrest Survivor Alliance™ (CASA), an online community to support these individuals. CASA offers evidence-based information about common challenges post-arrest, easy connection with peers, access to experts, and pathways to further clinical support. To measure early dissemination, we examined CASA’s community engagement and growth through the first 5 months. Methods: We built CASA using Mighty Networks (MN), assembled a leadership team including researchers and clinicians with expertise in post-resuscitation quality of life, and launched the community in mid-January 2023. We recruited members through SCAF’s Survivor Network and outreach via its website, newsletters, and social media. We obtained analytic reports to evaluate engagement and growth of CASA during the first 5 months of operation. Results: By mid-June 2023, there were 868 members from the U.S. and 21 other countries. Based on preliminary data, approximately 75% of members are survivors. Initial growth resulted from SCAF outreach and is continuing organically through internet searches and member outreach. During the 5-month period, there were: 6,829 contributions (sum of actions taken by hosts, moderators and members including posts, “cheers,” comments, chat messages, direct [private] messages [DMs], and RSVPs), 858 active members (total members who visited during the 5-month period), and 376 unique members providing contributions. Members are not only engaging publicly, but also privately; 344 members (40%) have sent 1,944 DMs. MN considers communities to be successful if 15% or more members send DMs. CASA also provides monthly webinars with guided discussions led by experts. Attendance has ranged from 22 to 47 participants. Conclusion: In the 5 months since its launch, the CASA community is engaged and continually growing. Future plans include providing additional evidence-based content, outreach to hospitals and targeted healthcare professionals, and collaboration with program partners to grow the CASA community.

The Stories We Tell Influence the Support We Receive: Examining the Reception of Support-Seeking Messages on Reddit.

Although social support facilitates coping and recovering from stressful life events, people do not always get the support that they need. Prior research suggests that the way one talks about stressful events to others may influence the support they receive. Given that people are increasingly relying on online communities for social support, this study adopted a person-centered approach (latent profile analysis) to examine how narrative variables related to the motivational themes, emotional content, and organizational structure of randomly sampled support-seeking messages (N = 495) posted on Reddit (r/Anxiety and r/Depression) influenced the quantity (number of comments and post score) and quality (type of support in comments) of support that they received. We identified five distinct narrative profiles of support-seeking posts, which in turn differentially predicted the quality, but not quantity, of social support people received. While commenters provided high levels of emotional support to all forms of posts, we found that coherence was an important determinant of esteem support. A combination of coherence, as well as agency and affective tone, were important determinants of instrumental, informational, and network support. The ways in which one talks about their problems influence the way others support them.

E-Learning Engagements of Pre-Service Education Students

This study aimed to ascertain the e-learning engagements of selected Pre-service Education students in online distance learning and determined whether the e-learning engagements vary based on the student’s profile variables. The study group of the survey comprised 275 first to third-year students of BSED-Sciences, BTVTED and BSED-Mathematics enrolled at Surigao State College of Technology (SSCT), City Campus. A researchers-made questionnaire was used, validated and tested for reliability using Cronbach Alpha internal consistency coefficient with (α=0.85) for the entire scale (20 items). Distribution of web-based questionnaires through Google Forms followed. The data collected were treated using frequency, percentage count, mean, standard deviation, and analysis of variance (ANOVA). A descriptive survey research design was also employed. Study results indicated that the behavioral, social, cognitive, and technological engagements of the students were generally positive. Particularly, social engagement rated very high with a mean score of 2.97 (SD=0.53) meanwhile, technological engagement rated a lowest mean value of 2.71 (SD=0.55) signifying that students’ e-learning engagement is lesser as unstable internet connection was found to be the main technological problem which caused students to get frequent absences during online classes. Additionally, mobile phone devices revealed to be the most useful ICT tool to assist students’ in managing the online learning system. Moreover, the e-learning engagements were found not to vary based on students’ sex and family income. However, students’ age, year level, program and specialization and gadgets used in modular and online classes made a significant difference which shows that the profile differences of Pre-service education students contribute a direct effect towards their online learning engagement. Implications from the results recommend a need to sustain social interaction between stakeholders, increased students’ online resources and community support by provision of learners’ online learning demands.

An Exploratory Analysis of the Chronic Rhinosinusitis Online Support Community.

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. Cross-sectional online survey. Online. 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 3months and analyzed thereafter. 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. 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.

Patients With Rare Diseases and the Power of Online Support Groups: Implications for the Medical Community.

Previous studies have shown positive tangible health benefits from using online support communities for informational support, daily living support, and emotional support. The specifics of how these communities can be improved have not been studied in detail. This study will investigate various sources of information that patients with genetic disorders use to learn more about their condition. We will be using patients with Ehlers-Danlos Syndrome (EDS) as a typical representation of the wider group of patients with genetic disorders. This study will also investigate the benefits and disadvantages of web-based platforms and how they can be improved. We used quantitative and qualitative analyses in this study. We undertook a web-based questionnaire survey and semistructured qualitative interviews through Zoom. Questionnaire results were analyzed using descriptive analysis. Thematic coding with constant comparison was used for interview transcript analysis. A total of 436 respondents completed some or all of the survey. The majority of participants are female (386/413, 93.46%), and 24% (99/413) of them are in the age range of 25-34 years. Around 81% (336/413) of the participants have some type of college degree, and 55% (227/413) of them have graduate degrees. About 49.31% (204/413) of them are not currently employed. Most patients stated that their health care providers did not give accurate and complete information to them regarding their health situation (mean 2.87, SD 1.34). Also, patients perceived their providers as not knowledgeable regarding web-based communities that discuss patients' conditions (mean 1.93, SD 1.15). Patients are confident in using health care resources available in web-based health communities (mean 3.78, SD 1.13). We interviewed 30 participants. The demographics of the interviewees were aligned with those of the survey participants. A total of 9 different themes were identified based on the Qualtrics survey and qualitative interviews. Participants shared the pros and cons of different online support groups that they were using and gave suggestions for improvement. They requested a centralized database with different categories of resources classified based on different diseases. They also emphasized the importance of search features and the ability to find relevant information with a hashtag. Furthermore, they elaborated on the privacy and security concerns they have regarding web-based support group platforms. Patients with rare diseases are finding information not available from their health care providers in community support groups. The medical community and web developers have a great opportunity to help these people by engaging with their web-based communities.

Tick Tock, 30 Seconds to Better Health: Role of Social Media on Cardiovascular Health Promotion.

As social media becomes an integral part of daily life, healthcare organizations and professionals have harnessed these platforms to increase awareness of cardiovascular disease, provide education regarding modifiable risk factors, and to advocate for further research. Social media can empower patients to share personal accounts of living with cardiovascular conditions, and provide access to global online communities for peer support. Healthcare professionals who use social media must navigate engaging with patients, respecting confidentiality, sharing credible information, and maintaining professionalism.

Women in Need-The Nature of Social Support in an Online Community.

Some women, especially victims of violence, seek support in online groups. The objective of this research was to investigate the nature of the social support women receive in such online communities. For this purpose, all the posts from a large online support community group for women in Slovenia, Women in Need, from 2002 to the end of 2020 were retrieved and analyzed manually as well as by using a text-mining approach. The results show that women in the investigated community mostly seek informational support, spend little time actively contributing to online discussions, and rarely become engaged members of supportive groups within the focal online space. Some recommendations on how to improve the functionality of online social support sites are provided.

Resource flows in a multi-directional integrated value creation model

This research reveals a multi-directional value creation model that highlights the role of customers as partners in a network of reciprocal resource exchanges. Customer-partners are conceptualized as customers that go beyond purchasing and using a product or service. They voluntarily engage end-customers to help the end-customers use the firms’ products and services, or to otherwise solve the end-customer’s problems with the firms’ products or services. To illustrate the importance of the customer-partner to the value creation process, the authors integrate various value creation perspectives with social and resource exchange theories to illuminate the various resources exchanged when firms and their various types of customers engage in social interactions. The resultant model is derived from a netnography in the context of a high-tech firm’s online support community. Findings point to three important activities (platform design, customer profiling, and platform engagement) for firms to consider if they hope to successfully integrate their customers in the value creation process.

Academic Communities of Engagement: exploring the impact of online and in-person support communities on the academic engagement of online learners

Academic Communities of Engagement: exploring the impact of online and in-person support communities on the academic engagement of online learners

Information interaction and social support: exploring help-seeking in online communities during public health emergencies

BackgroundDuring public health emergencies, online community users can obtain social support and assistance through information interaction in the online community. This study takes the COVID-19 pandemic as the context and aims to analyze the influence of user information interaction in online communities on the acquisition of social support during this public health emergency.MethodsData collected from help-seeking posts in the “COVID-19 Patients Help-Seeking Dialog” subforum on China’s Sina Weibo were used as the research sample. The influence of the frequency of interaction and responsiveness on help seekers’ receipt of online social support was analyzed, and the moderating effect of help seekers’ identity type and intensity of online community use was explored.ResultsThe results reveal that the frequency of interaction positively impacts informational support (β = 0.367, p < 0.001) and negatively impacts emotional support (β=-0.240, p < 0.001), and the responsiveness of other users toward help-seeking posts positively impacts emotional support (β = 0.145, p < 0.01). Moreover, help seeker’s identity type and intensity of online community use significantly moderate the relationship between the frequency of interaction and the emotional support obtained by the help seeker.ConclusionsThe study highlights the impact of user information interaction on obtaining help-seeking information from online communities for social support. The initiative would facilitate the resolution of issues related to users’ information help-seeking during public health emergencies.

EXPLORING RELATEDNESS AS SOUGHT BY ADOLESCENTS AND YOUNG ADULTS IN AN ONLINE INSTAGRAM INFLAMMATORY BOWEL DISEASE SUPPORT COMMUNITY

Individuals with chronic conditions have flocked to social media as a source of information, connection, and support. Online social groups are particularly salient for individuals with isolating or stigmatized conditions such as inflammatory bowel disease (IBD). IBD self-management is complex, ongoing, and highly individualized. Adolescents and young adults (AYAs) often struggle with IBD self-management, resulting in increased risk for poor health outcomes. AYAs with IBD are active on social media sites, but little is known about the possible drivers of motivation for AYAs to engage in online support communities.

Community transformed? Exploring the interaction between online support and rural community life for people with acute mental health conditions

Since the onset of COVID-19, the benefits of online platforms to enhance rural service accessibility are more acknowledged. However, questions remain about the interconnected roles of geographical community and online digital communities in enhancing rural life – particularly for marginalised groups. In this study, we examine one Australian non-profit's online peer support forums as technology enabling transformed community experiences for rural people with mental health conditions. Interviews exploring forum use were conducted with 20 rural forum users in 2021. We found technology affordances were appropriated to target rural service and social interaction gaps, giving people resources used online, and also enabling coping in their geographical community. The study illustrates the benefits of understanding what rural people do with different technologies that can illuminate how apparently “one-size-fits-all” technologies can be appropriated to fill certain rural structural holes in social and service systems.

Digital Practices by Citizens During the COVID-19 Pandemic: Findings From an International Multisite Study.

The COVID-19 pandemic brought digital practices and engagement to the forefront of society, which were based on behavioral changes associated with adhering to different government mandates. Further behavioral changes included transitioning from working in the office to working from home, with the use of various social media and communication platforms to maintain a level of social connectedness, especially given that many people who were living in different types of communities, such as rural, urban, and city spaces, were socially isolated from friends, family members, and community groups. Although there is a growing body of research exploring how technology is being used by people, there is limited information and insight about the digital practices employed across different age cohorts living in different physical spaces and residing in different countries. This paper presents the findings from an international multisite study exploring the impact of social media and the internet on the health and well-being of individuals in different countries during the COVID-19 pandemic. Data were collected via a series of online surveys deployed between April 4, 2020, and September 30, 2021. The age of respondents varied from 18 years to over 60 years across the 3 regions of Europe, Asia, and North America. On exploring the associations of technology use, social connectedness, and sociodemographic factors with loneliness and well-being through bivariate and multivariate analyses, significant differences were observed. The levels of loneliness were higher among respondents who used social media messengers or many social media apps than among those who did not use social media messengers or used ≤1 social media app. Additionally, the levels of loneliness were higher among respondents who were not members of an online community support group than among those who were members of an online community support group. Psychological well-being was significantly lower and loneliness was significantly higher among people living in small towns and rural areas than among those living in suburban and urban communities. Younger respondents (18-29 years old), single adults, unemployed individuals, and those with lower levels of education were more likely to experience loneliness. From an international and interdisciplinary perspective, policymakers and stakeholders should extend and explore interventions targeting loneliness experienced by single young adults and further examine how this may vary across geographies. The study findings have implications across the fields of gerontechnology, health sciences, social sciences, media communication, computers, and information technology. RR2-10.3389/fsoc.2020.574811.

Engagement in Online Communities by New Mothers in Recovery from Opioid Use Disorder.

The purpose of this study was to examine the role of engagement with online communities by women using medication-assisted treatment (MAT) to manage recovery from opioid use disorder (OUD) during pregnancy and the first year after birth. Ten participants were identified through purposive sampling for this secondary data analysis as part of a larger grounded theory study about ways women using MAT for recovery from OUD meet the needs of their mother-infant dyad. Inclusion criteria included: English-speaking, 18 years of age or older, living in the United States, within the first year after birth, using MAT to manage OUD, and identified engaging with online communities during pregnancy and/or postpartum. A categorical-content narrative approach was used. Three narratives were identified from the analysis, belonging , collaboration , and expecting success . Engagement in online communities can be a meaningful adjunct or replacement for in-person support. Online spaces are available 24/7 and allow people to join a community where they will not experience stigma and can find support tailored to their needs. Health care providers could extend their care for mothers affected by OUD by referring them to online communities for support of recovery self-management efforts.

The Alice in Wonderland Syndrome: A Mixed-Method Exploratory Analysis of AIWS Experiences

The Alice in Wonderland Syndrome (AIWS) is a rare neuropsychological disorder impacting somesthetic and visual perceptions, with symptoms ranging from body-image to time distortions. Objective: to expand current knowledge on the Alice in Wonderland Syndrome (AIWS) by investigating the experiences of individuals with the syndrome through a review of literature and posts on AIWS-specific online support communities. Methods: This study was conducted as a mixed-method exploratory investigation of AIWS from two independent sources: a meta-analytical review of published scientific literature from 1955 to 2022 and a review of narrative posts from a moderated online forum specific to AIWS. The online forum was purposefully selected after performing a keyword search on electronic databases, and the literature pertaining to AIWS case series were found using Pubmed. The material from both data collection approaches was subsequently analyzed using qualitative thematic analysis, with relevant descriptive data quantified in numerical form. A total of 253 published cases and case series from 1955 to 2022 were identified and of 194 forum posts, 75 narrative cases met the eligibility criteria. Eligible forum cases were restricted to individuals who: were formally or self-identified as having or having had AIWS and those reporting a family members experience with AIWS. Results: Valuable insight into informational versus emotional needs of individuals with AIWS was brought to light. Support was sought through voluntary sharing of knowledge, personal reactions, diagnostic concerns and symptom-management advice. Medical interventions were more prevalent in published data, with an etiological/neurological focus- infectious causes in children and migraines as an associated condition in adults- as well as a pharmacological one. A potential familial or genetic component of AIWS additionally arose from forum cases. A prevalence of the onset of AIWS in pediatric populations, personal and environmental reactions, cultural factors and a lack of knowledge contributed to underreporting. Nosographical differences further hindered the early diagnosis of AIWS and the lack of appropriate interventions. Conclusion: A patient-centered experiential and functional approach to the classification of AIWS symptoms and ensuing symptom-management options could help populations feel seen, heard and understood, aid reporting and increase access to early intervention and coping techniques.

Online Communities for Child-Attracted Persons as Informal Mental Health Care: Exploring Self-Reported Wellbeing Outcomes.

Online support communities are gaining attention among child-attracted persons (CAPs). Though research has largely focused on the negative consequences these environments create for potential offending, they may also provide a beneficial alternative to more formal treatment settings. To assess the utility for clinical and therapeutic purposes, this analysis focused on subcultural dynamics to examine self-reported wellbeing outcomes of participation in a Dutch forum for CAPs. A total of 15 semi-structured interviews were conducted with moderators, members and mental health professionals involved in the community. Thematic analyses demonstrated that by means of informal social control, bonds of trust and social relational education, the network aims to regulate the behavior and enhance the wellbeing of its marginalized participants. Key outcomes include a decreased sense of loneliness and better coping with stigma, to the point that participants experience less suicidal thoughts. Association with prosocial peers also helps to set moral boundaries regarding behavior towards children, although we cannot fully rule out potential adverse influences. Online support networks offer a stepping stone to professional care that fits individual needs of CAPs, while also providing an informal environment that overcomes limitations of physical therapy and that extents principles of existing prevention and desistance approaches.