Moderated Online Research Articles

Internet-based psychoeducation and support programme for relatives of young people with early psychosis: results of the first German-language intervention.

International clinical guidelines recommend Family Interventions (FIs) especially for families of people at early stages of psychosis. The German S3 treatment guideline for schizophrenia gives FIs the highest level of clinical recommendation. However, some family relatives have limited access to these services due to health system constrains. Digital interventions have emerged as a solution to overcome this hindered access to evidence-based family interventions. The present pilot study evaluates the feasibility and potential efficacy of the first German moderated online psychoeducation and support programme (ePSP) for relatives of people with early psychosis, with the additional purpose to improve accessibility and reduce waiting times. A pre-post study was performed. A brief recruitment period was pre-established (10 weeks) to test potential improvement of regular therapy waiting times in Germany. A total of 25 relatives of people with early psychosis were recruited and received the 12-week moderated online intervention. Assessments were conducted at baseline and at post intervention. Acceptance of the intervention and the user's experience were also evaluated at post intervention. Recruitment, retention rates and qualitative data support the feasibility and acceptability of the ePSP. Significant positive effects of the interventions were found on key therapeutic targets, including both primary outcomes (i.e., perceived stress and beliefs about the illness). Twenty-one participants also completed the open-ended questions of the user experience questionnaire, which yielded three main themes: most important modules, difficulties in using the programme and ways to improve ePSP. These results provide preliminary efficacy estimates for a fully powered RCT to investigate superiority (or equipoise) effects of the ePSP in comparison to the routine face-to-face family therapy groups. This future RCT will also allow further exploration of ePSP to improve access to psychological therapy for relatives of young people with psychosis, also in relation to the new ground-breaking Digital Healthcare Act in Germany.

The Effects of a Digital, Transdiagnostic, Clinically and Peer-Moderated Treatment Platform for Young People With Emerging Mental Health Complaints: Repeated Measures Within-Subjects Study.

To address the growing prevalence of youth mental health problems, early intervention is crucial to minimize individual, societal, and economic impacts. Indicative prevention aims to target emerging mental health complaints before the onset of a full-blown disorder. When intervening at this early stage, individuals are more responsive to treatment, resulting in cost-effective outcomes. The Moderated Online Social Therapy platform, which was successfully implemented and proven effective in Australia, is a digital, peer- and clinically moderated treatment platform designed for young people. The Netherlands was the first country outside Australia to implement this platform, under the name Engage Young People Early (ENYOY). It has the potential to reduce the likelihood of young people developing serious mental health disorders. This study aims to investigate the effects on young people using the ENYOY-platform in relation to psychological distress, psychosocial functioning, and positive health parameters. Dutch-speaking young people with emerging mental health complaints (N=131) participated in the ENYOY-platform for 6 months in a repeated measures within-subjects study. Psychological distress, psychosocial functioning, and positive health parameters were assessed at baseline and 3, 6, and 12 months. Repeated measures ANOVA was conducted and adjusted for age, sex, therapy, and community activity. The Reliable Change Index and Clinically Significant Index were computed to compare the baseline with the 6- and 12-month measurements. The missing data rate was 22.54% and the dropout rate 62.6% (82/131). The primary analysis (77/131, 58.8%) showed that psychological distress decreased and psychosocial functioning improved over time with large effect sizes (P<.001 in both cases; ηp2=0.239 and 0.318, respectively) independent of age (P=.76 for psychological distress and P=.48 for psychosocial functioning), sex (P=.24 and P=.88, respectively), therapy activity (P=.49 and P=.80, respectively), or community activity (P=.59 and P=.48, respectively). Similarly, secondary analyses (51/131, 38.9%) showed significant effects of time on the quality of life, well-being, and meaningfulness positive health parameters (P<.05; ηp2=0.062, 0.140, and 0.121, respectively). Improvements in all outcome measures were found between baseline and 3 and 6 months (P≤.001-.01; d=0.23-0.62) and sustained at follow-up (P=.18-.97; d=0.01-0.16). The Reliable Change Index indicated psychological distress improvements in 38% (39/102) of cases, no change in 54.9% (56/102) of cases, and worsening in 5.9% (6/102) of cases. Regarding psychosocial functioning, the percentages were 50% (51/102), 43.1% (44/102), and 6.9% (7/102), respectively. The Clinically Significant Index demonstrated clinically significant changes in 75.5% (77/102) of cases for distress and 89.2% (91/102) for functioning. This trial demonstrated that the ENYOY-platform holds promise as a transdiagnostic intervention for addressing emerging mental health complaints among young people in the Netherlands and laid the groundwork for further clinical research. It would be of great relevance to expand the population on and service delivery of the platform. RR2-10.1186/s12888-021-03315-x.

Developing a Theory of Change for a Digital Youth Mental Health Service (Moderated Online Social Therapy): Mixed Methods Knowledge Synthesis Study.

Common challenges in the youth mental health system include low access, poor uptake, poor adherence, and limited overall effectiveness. Digital technologies offer promise, yet challenges in real-world integration and uptake persist. Moderated Online Social Therapy (MOST) aims to overcome these problems by integrating a comprehensive digital platform into existing youth mental health services. Theory of change (ToC) frameworks can help articulate how and why complex interventions work and what conditions are required for success. The objective of this study is to create a ToC for MOST to explain how it works, why it works, who benefits and how, and what conditions are required for its success. We used a multimethod approach to construct a ToC for MOST. The synthesis aimed to assess the real-world impact of MOST, a digital platform designed to enhance face-to-face youth mental health services, and to guide its iterative refinement. Data were gathered from 2 completed and 4 ongoing randomized controlled trials, 11 pilot studies, and over 1000 co-design sessions using MOST. Additionally, published qualitative findings from diverse clinical contexts and a review of related digital mental health literature were included. The study culminated in an updated ToC framework informed by expert feedback. The final ToC was produced in both narrative and table form and captured components common in program logic and ToC frameworks. The MOST ToC captured several assumptions about digital mental health adoption, including factors such as the readiness of young people and service providers to embrace digital platforms. External considerations included high service demand and a potential lack of infrastructure to support integration. Young people and service providers face several challenges and pain points MOST seeks to address, such as limited accessibility, high demand, poor engagement, and a lack of personalized support. Self-determination theory, transdiagnostic psychological treatment approaches, and evidence-based implementation theories and their associated mechanisms are drawn upon to frame the intervention components that make up the platform. Platform usage data are captured and linked to short-, medium-, and long-term intended outcomes, such as reductions in mental health symptoms, improvements in functioning and quality of life, reductions in hospital visits, and reduced overall mental health care costs. The MOST ToC serves as a strategic framework for refining MOST over time. The creation of the ToC helped guide the development of therapeutic content personalization, user engagement enhancement, and clinician adoption through specialized implementation frameworks. While powerful, the ToC approach has its limitations, such as a lack of standardized methodology and the amount of resourcing required for its development. Nonetheless, it provides an invaluable roadmap for iterative development, evaluation, and scaling of MOST and offers a replicable model for other digital health interventions aiming for targeted, evidence-based impact.

Moderated Online Social Therapy for Carers of Early Psychosis Clients in Real-World Settings: Cluster Randomized Controlled Trial.

Family carers of youth recovering from early psychosis experience significant stress; however, access to effective family interventions is poor. Digital interventions provide a promising solution. Our objective was to evaluate across multiple Australian early psychosis services the effectiveness of a novel, web-based early psychosis intervention for carers. In this cluster randomized controlled trial conducted across multiple Australian early psychosis services, our digital moderated online social therapy for carers (Altitudes) plus enhanced family treatment as usual (TAU) was compared with TAU alone on the primary outcome of perceived stress and secondary outcomes including mental health symptoms and family variables at the 6-month follow-up. Eighty-six caregivers were randomized and data were available for 74 young people in their care. Our primary hypothesis that carers randomized to Altitudes+TAU would report greater improvements in perceived stress at follow-up compared with carers randomized to TAU alone was not supported, with the TAU alone group showing more improvement. For secondary outcomes, the TAU alone group showed improved mindfulness over time. Regardless of group assignment, we observed improvements in satisfaction with life, quality of life, emotional overinvolvement, and burden of care. In contrast, hair cortisol concentration increased. Post hoc analyses revealed more contact with early psychosis services in the intervention group compared to TAU alone and that improvements in perceived stress and social support were associated with use of the intervention in the Altitudes+TAU group. In this study, 80% (12/15) reported a positive experience with Altitudes and 93% (14/15) would recommend it to others. Our trial did not show a treatment effect for Altitudes in perceived stress. However, our post hoc analysis indicated that the amount of use of Altitudes related to improvements in stress and social support. Additional design work is indicated to continue users' engagement and to significantly improve outcomes in problem-solving, communication, and self-care. Australian and New Zealand Clinical Trials Registry ACTRN12617000942358; https://trialsearch.who.int/Trial2.aspx?TrialID=ACTRN12617000942358.

Behaviour and Bot Analysis on Online Social Networks

The internet is home to a multitude of social networks that provide users with a sense of community and connection across the world. Among these, Twitter and Reddit are two of the most popular. While Twitter users follow and interact with other users (tweets), Reddit users follow and interact with communities known as subreddits. In addition to mainstream social networks, alternative platforms such as Parler exist for users who prefer less moderated online environments. However, there are also malicious users, such as bots and trolls, who exploit social networks for malicious purposes. Therefore, separating malicious behaviors from legitimate ones is crucial. This research aims to evaluate Botometer and RepScope systems to analyze the temporal posting behaviors of Twitter, Reddit, and Parler users and to identify bots, trolls, and malicious behaviors.

User experiences of an American-adapted moderated online social media platform for first-episode psychosis: Qualitative analysis

User experiences of an American-adapted moderated online social media platform for first-episode psychosis: Qualitative analysis

User experiences of an American-adapted moderated online social media platform for first-episode psychosis: Qualitative analysis.

The current study sought to qualitatively characterize the experiences of American users in a recent open trial of the Horyzons digital platform. In total, 20 users on Horyzons USA completed semistructured interviews 12 weeks after their orientation to the platform and addressed questions related to (1) the platform, (2) their online therapist, and (3) the peer workers and community space. A hybrid inductive-deductive coding strategy was used to conduct a thematic analysis of the data (NCT04673851). The authors identified seven prominent themes that mapped onto the three components of self-determination theory. Features of the platform itself as well as inter- and intra-personal factors supported the autonomous use of Horyzons. Users also reflected that their perceived competence in social settings and in managing mental health was increased by the familiarity, privacy, and perceived safety of the platform and an emphasis on personalized therapeutic content. The behaviors or traits of online therapists as perceived by users and regular contact with peers and peer support specialists satisfied users' need for relatedness and promoted confidence in social settings. Users also described aspects of Horyzons USA that challenged their satisfaction of autonomy, competence, and relatedness, highlighting potential areas for future iterations of the platform's content and interface. Horyzons USA is a promising digital tool that provides young adults with psychosis with the means to access tailored therapy material on demand and a supportive digital community to aid in the recovery process.

Moderated Online Data-Collection for Developmental Research: Methods and Replications.

Online data collection methods are expanding the ease and access of developmental research for researchers and participants alike. While its popularity among developmental scientists has soared during the COVID-19 pandemic, its potential goes beyond just a means for safe, socially distanced data collection. In particular, advances in video conferencing software has enabled researchers to engage in face-to-face interactions with participants from nearly any location at any time. Due to the novelty of these methods, however, many researchers still remain uncertain about the differences in available approaches as well as the validity of online methods more broadly. In this article, we aim to address both issues with a focus on moderated (synchronous) data collected using video-conferencing software (e.g., Zoom). First, we review existing approaches for designing and executing moderated online studies with young children. We also present concrete examples of studies that implemented choice and verbal measures (Studies 1 and 2) and looking time (Studies 3 and 4) across both in-person and online moderated data collection methods. Direct comparison of the two methods within each study as well as a meta-analysis of all studies suggest that the results from the two methods are comparable, providing empirical support for the validity of moderated online data collection. Finally, we discuss current limitations of online data collection and possible solutions, as well as its potential to increase the accessibility, diversity, and replicability of developmental science.

Using co-design to develop an online intervention for families after a sudden cardiac death in the young

Abstract Funding Acknowledgements Type of funding sources: Foundation. Main funding source(s): National Heart Foundation of Australia / NHMRC Co-funded Post Graduate Scholarship Introduction Sudden cardiac death (SCD) is a devastating complication of many genetic heart diseases. The psychological impact on surviving family members is significant and lifelong. Previous needs analysis found medical and psychological needs are of high importance but remain unmet in some cases. Co-design is an increasingly popular research method for the development of interventions and services that include users as contributing members of the research team. Previous research has shown co-design leads to innovative ideas that better address user needs. Purpose To use co-design to develop an online support intervention for families after SCD. Methods Semi-structured moderated online focus groups were held with key stakeholders, including family members who had experienced young SCD, healthcare professionals and researchers. Guided discussions were used to co-design an online support intervention. Thematic analysis of discussions and iterative feedback on draft materials guided content development. Results Four focus groups were held (average 11 participants per group). Stakeholder involvement facilitated development of high-level ideas and priority issues. Key benefits included creative content and materials developed based on user preference for stories, narratives and information reflecting everyday experience of families navigating the legal and medical processes surrounding SCD, normalising and supporting grief responses in the context of family relationships, and fostering hope. Conclusion Co-design supported creative presentation, tailoring of information and development of psychosocial interventions to meet the needs of SCD families. Further work is needed to pilot and trial the intervention, prior to it becoming a key resource in the care of these families.

Young people's experience of online therapy for first-episode psychosis: A qualitative study.

This study aimed to understand how young people with first-episode psychosis experienced online therapy on a Moderated Online Social Therapy (MOST) platform known as Horyzons. Semi-structured in-depth qualitative interviews were conducted with 12 young people who had previously participated in Horyzons, a randomized controlled trial (RCT) of a long-term digital intervention for first-episode psychosis. Interviews were analysed using a phenomenological approach. This study found that the online therapy experience for first-episode psychosis was idiosyncratic, taking on different meaning for different users. The relatively fixed therapeutic content led to experiences that included on-demand help-seeking, positive distraction, revision, generalization and translation, and normalization. We also found that although the experience of online therapy was motivating to some, it was overwhelming for others. The self-directed and flexible nature of the Horyzons online therapy gave some young people a sense of welcomed control over their mental health journey, and others felt overwhelmed by the high level of choice. Feeling overwhelmed by the level of choice appeared to interrupt their engagement with the platform, and thus their overall ability to use the intervention meaningfully. We also found that on-demand help-seeking and positive distraction were two functions unique to young people through online therapy and may have been related to the significant reduction in the number of overall presentations by young people to emergency departments and a non-significant trend for lower hospitalizations due to psychosis in the intervention group of the Horyzons RCT. Young people used online therapy for on-demand support to help deal with distress. Young people used online therapy to distract themselves from distress in a positive way. Some young people valued the flexibility of online therapy, which increased their motivation to engage with it. Some young people were overwhelmed by the amount of choice available to them via online therapy, which decreased their motivation to engage.

“It doesn’t stop when you get to 18”: experiences of self-harm in adults

Purpose Self-harm can affect people of all ages, yet the high prevalence rate in adolescents and the potential risk factor of suicide in adults 60 years and above has meant research has tended to focus within these areas. Therefore, the purpose of this exploratory study is to examine the experiences of self-harm in people from early adulthood to late middle age to gain greater insight and understanding in this underexplored area. Design/methodology/approach An online open-ended survey was used to collect the data from a UK user-led moderated online forum that supports people who self-harm. Findings Thematic data analysis indicates that feelings of shame and guilt were intensified, due to the double stigma participants face as adults that self-harm. Although most participants had seen a reduction in the frequency of their self-harm many experienced an increase in the severity of harm. In not fitting the assumed typical profile of someone that self-harm participants often struggled to gain formal support. Research limitations/implications This was a small-scale online survey; hence, it is not possible to generalise the findings to all adults who self-harm. Practical implications The findings from this research provide evidence that greater recognition needs to be given to the reality that self-harm can affect people of all ages. As a result, access to support needs to be widened as a means of supporting those who do not fit the typical profile of someone who self-harms. Originality/value This exploratory online study provides insights around the tensions and challenges facing adults that self-harm, which remains an under-researched and largely ignored area.

An online intervention for vulnerable young adults: identifying mechanisms of change using a grounded theory approach.

The purpose of this study is to qualitatively identify the mechanisms of change as young adults, whose parents have a mental illness and/or substance use issue, navigate their way through a 6-week, moderated online intervention. Using a qualitative, grounded theory approach, data were collected and triangulated for analysis from participants before, during, and after engaging in the intervention. First, 31 young people's motivations for enrolling in the intervention were identified from one open ended question on an online survey. Second, online chat sessions were analysed to identify those topics the 31 participants engaged in throughout the intervention. Finally, 19 interviews were conducted 2 weeks post-intervention, to ascertain participants' perceptions of the impacts of the intervention and how the intervention promoted changes. The main storyline was that of participants "making sense" of their parents, themselves and other relationships, in collaboration with peers, in a safe online space. This storyline of "making sense" drove their motivation to join the intervention and was the focus of the online chats. After the intervention, some were closer to having "made sense" of their families while others struggled differentiating themselves away from their families. An anonymous, professionally moderated online site afforded participants opportunities to think about who they were and for some, who they wanted to be. Generating an explanatory theory of how vulnerable young people navigate their way through an online intervention provides important information that can be used to inform future services, interventions, and research.

Moderated Online Social Therapy for Young People With Active Suicidal Ideation: Qualitative Study.

BackgroundWeb-based interventions are a promising approach to support youth at risk of suicide, and those incorporating peer-to-peer social networking may have the added potential to target interpersonal states of perceived burdensomeness and thwarted belongingness. Owing to feasibility and safety concerns, including fear of contagion, this had not been tested until recently. In 2018, we conducted a pilot evaluation to test the feasibility, safety, and acceptability of a Moderated Online Social Therapy intervention, called Affinity, with a sample of young people with active suicidal ideation.ObjectiveThe aim of this study is to report qualitative data collected from study participants regarding their experience of the web-based social network and the consequent safety features.MethodsAffinity is a closed website incorporating 3 key components: therapeutic content delivered via comics, peer-to-peer social networking, and moderation by peers and clinicians. Semistructured interviews were conducted with 17 young people who participated in the pilot study after 8 weeks of exposure to the intervention. Interview data from 2 young people who did not use Affinity were excluded from the analysis. The interviews were analyzed using thematic analysis, with the frequency of responses characterized using the consensual qualitative research method. The results are reported in accordance with the Consolidated Criteria for Reporting Qualitative Research checklist.ResultsA total of 4 overarching themes were identified: a safe and supportive environment, the importance of mutual experiences, difficulty engaging and connecting, and the pros and cons of banning discussions about suicide. Interestingly, although Affinity was perceived to be safe and free of judgment, concerns about negative evaluation and triggering others were significant barriers to posting on the social network. Participants generally supported the banning of conversations about suicide, although for some this was perceived to reinforce stigma or was associated with frustration and distress.ConclusionsThe results not only support the safety and potential therapeutic benefit of the social networking aspect of Affinity but also highlight several implementation challenges. There is a need to carefully balance the need for stringent safety and design features while ensuring that the potential for therapeutic benefit is maximized.

Perceived Helpfulness of a Moderated Online Social Therapy Network for Young People Experiencing Social Anxiety.

There is a growing need for more effective delivery of digital mental health interventions, particularly for individuals experiencing difficulty accessing or engaging with traditional face-to-face therapy. Young people with social anxiety, and young males with social anxiety in particular need interventions sensitized to their needs. While digital interventions for mental health have proliferated, increasing their accessibility and utility, the data on acceptability and effectiveness of these interventions, however, indicates a need for improvement. The current study sought to utilise qualitative data from semi-structured interviews with 70 participants (male n = 33; age range = 14–25 years, mean age = 19.8) from a single-group pilot study of a novel intervention for young people with social anxiety (Entourage), using a content analysis approach. Results indicated that participants spoke about five main categories: connection, anxiety management, appeal, disengagement and system improvement. No overt gender differences were found in the appeal or perceived helpfulness of the Entourage platform. The current study provides valuable information and suggestions to guide future improvement of digital interventions for young people, particularly those experiencing social anxiety.

A Novel Multimodal Digital Service (Moderated Online Social Therapy+) for Help-Seeking Young People Experiencing Mental Ill-Health: Pilot Evaluation Within a National Youth E-Mental Health Service.

BackgroundMental ill-health is the leading cause of disability worldwide. Moreover, 75% of mental health conditions emerge between the ages of 12 and 25 years. Unfortunately, due to lack of resources and limited engagement with services, a majority of young people affected by mental ill-health do not access evidence-based support. To address this gap, our team has developed a multimodal, scalable digital mental health service (Enhanced Moderated Online Social Therapy [MOST+]) merging real-time, clinician-delivered web chat counseling; interactive user-directed online therapy; expert and peer moderation; and peer-to-peer social networking.ObjectiveThe primary aim of this study is to ascertain the feasibility, acceptability, and safety of MOST+. The secondary aims are to assess pre-post changes in clinical, psychosocial, and well-being outcomes and to explore the correlations between system use, perceived helpfulness, and secondary outcome variables.MethodsOverall, 157 young people seeking help from a national youth e-mental health service were recruited over 5 weeks. MOST+ was active for 9 weeks. All participants had access to interactive online therapy and integrated web chat counseling. Additional access to peer-to-peer social networking was granted to 73 participants (46.5%) for whom it was deemed safe. The intervention was evaluated via an uncontrolled single-group study.ResultsOverall, 93 participants completed the follow-up assessment. Most participants had moderate (52/157, 33%) to severe (96/157, 61%) mental health conditions. All a priori feasibility, acceptability, and safety criteria were met. Participants provided mean scores of ≥3.5 (out of 5) on ease of use (mean 3.7, SD 1.1), relevancy (mean 3.9, SD 1.0), helpfulness (mean 3.5, SD 0.9), and overall experience (mean 3.9, SD 0.8). Moreover, 98% (91/93) of participants reported a positive experience using MOST+, 82% (70/93) reported that using MOST+ helped them feel better, 86% (76/93) felt more socially connected using it, and 92% (86/93) said they would recommend it to others. No serious adverse events or inappropriate use were detected, and 97% (90/93) of participants reported feeling safe. There were statistically significant improvements in 8 of the 11 secondary outcomes assessed: psychological distress (d=−0.39; P<.001), perceived stress (d=−0.44; P<.001), psychological well-being (d=0.51; P<.001), depression (d=−0.29; P<.001), loneliness (d=−0.23; P=.04), social support (d=0.30; P<.001), autonomy (d=0.36; P=.001), and self-competence (d=0.30; P<.001). There were significant correlations between system use, perceived helpfulness, and a number of secondary outcome variables.ConclusionsMOST+ is a feasible, acceptable, and safe online clinical service for young people with mental ill-health. The high level of perceived helpfulness, the significant improvements in secondary outcomes, and the correlations between indicators of system use and secondary outcome variables provide initial support for the therapeutic potential of MOST+. MOST+ is a promising and scalable platform to deliver standalone e-mental health services as well as enhance the growing international network of face-to-face youth mental health services.

An Innovative Online Qualitative Study to Explore the Symptom Experience of Patients with Primary Sjögren's Syndrome.

IntroductionPrimary Sjögren’s syndrome (pSS) is a complex, heterogenous autoimmune disease; no immunomodulatory drug has demonstrated efficacy, and no current treatments target the underlying cause. This study aimed to explore the disease and treatment experiences of patients with pSS.MethodsThis qualitative study (208399) comprised moderated online forum discussions and online one-to-one questions conducted in the USA over a 2-week period. Participants were self-reported patients with pSS; physician confirmation of diagnosis was sought. Participants described disease and symptom severity and satisfaction with current pSS treatments. Qualitative data analysis was performed using inductive coding analysis via open coding.ResultsFifty-two participants entered the study, of whom 48 provided analysable data. Symptoms were described as highly unpredictable and variable, with fatigue rated as the most severe and burdensome. Participants discussed how their pSS symptoms and the frequent need for regular treatment impacted their daily activities, social life, career and finances. Many participants perceived a poor understanding of pSS amongst physicians, leading to emotional distress and difficulties obtaining a diagnosis. All participants stated that an ideal medication would address the cause of pSS and not just treat symptoms.ConclusionNew insights into patients’ perspectives of pSS were generated from online discussion forums, revealing the additional impact of unpredictable symptoms and multiple symptomatic treatments to the high disease burden. Improving physician education of pSS may help to alleviate frustrations and delays associated with diagnosis; the advent of novel effective treatments would be welcomed by patients with pSS.Electronic Supplementary MaterialThe online version of this article (10.1007/s40744-020-00220-9) contains supplementary material, which is available to authorized users.

A Social Crowdsourcing Community Case Study: Interaction Patterns, Evolution, and Factors That Affect Them

A social crowdsourcing community (SCC) is a moderated online community where members participate in activities designed to elicit their opinions concerning topics related to products or services. This emerging paradigm of human computation systems is distinct in which it combines the powers of crowdsourcing and social networking to allow for systematic querying of crowds and synthesizing response data (i.e., contributions) into coherent reports for decision-makers. Since the SCC paradigm is relatively new, we apply methods from social network analysis and related fields to help answer important questions relevant to SCCs. We demonstrate the applicability of these methods by analyzing five years of interactions in a private SCC starting from its inception. This analysis reveals the patterns in members’ interactions within the SCC and key factors that affect them. In addition, the analysis reveals the patterns in the evolution of these interactions.

Improving clinical care for women with endometriosis: qualitative analysis of women’s and health professionals’ views

Purpose Endometriosis is a chronic condition where endometrial-like cells proliferate outside the uterus causing pain and disability. Limited treatments are available but symptom management is essential for social and economic participation. The aim was to compare women’s and health professionals’ perceptions of quality of endometriosis health care and opportunities for improvements. Methods Women participated in closed moderated online discussion groups and health professionals in semi-structured telephone interviews. Discussion group text and interview transcripts were thematically analyzed using the Framework Analysis approach. Results Forty-six women, 12 general practitioners (GPs), and 1 gynecologist participated. Endometriosis can have debilitating consequences. However, women reported that healthcare providers may dismiss symptoms, lack essential knowledge and provide inconsistent advice; treatments are seldom successful or without adverse side-effects. Health professionals acknowledged limitations in expertise, persistent myths, and challenges in achieving best practice. Enhancing collaborative care skills, individualized treatment plans, and local referral pathways to multi-disciplinary care may improve satisfaction with endometriosis care-giving and receiving. Conclusions This is the first comparison of patient and practitioner perceptions of endometriosis in primary healthcare. Models of multi-disciplinary, collaborative care need to be developed and evaluated against consumer-informed measures of women’s wellbeing, quality of life and satisfaction with symptom management and health care.

Development of a Moderated Online Intervention to Treat Social Anxiety in First-Episode Psychosis.

Background: It is well established that social anxiety disorder (SAD) is a significant clinical problem for individuals with a psychotic disorder. Comorbid social anxiety in individuals with psychosis has been associated with poorer premorbid functioning, increased depression, and a reduced quality of life. Cognitive behavior therapy (CBT) is recommended for people with psychosis as a first-line psychological treatment; however, its focus and evaluation primarily revolves around reducing psychotic symptoms and not necessarily targeting comorbid social anxiety symptoms. We developed a novel online social cognitive behavioral intervention (entitled EMBRACE) specifically designed to treat social anxiety symptoms in first episode psychosis (FEP). Methods: The key clinical and engagement features of the intervention were established through integrating evidence-based material derived from 1) CBT-based treatment models for SAD, 2) relevant literature findings related to psychosis and its clinical correlates (e.g., shame, social rank, and its relationship with social anxiety and paranoia), 3) feedback from youth focus groups in order to inform a user-centered intervention design, and 4) a highly multidisciplinary collaborative development approach to design therapy comics. Results: A detailed description of the final version of the 12-week online social intervention to treat social anxiety in FEP is presented. Conclusion: The EMBRACE intervention was designed to provide young people with the necessary skills and confidence to overcome social anxiety within a supportive, safe online space. By design, it allows young people the opportunity to practice their newly learnt skills to connect with others and in doing so, learn to embrace their true authentic selves.

HORYZONS trial: protocol for a randomised controlled trial of a moderated online social therapy to maintain treatment effects from first-episode psychosis services

IntroductionSpecialised early intervention services have demonstrated improved outcomes in first-episode psychosis (FEP); however, clinical gains may not be sustained after patients are transferred to regular care. Moreover, many patients with...