Exploring the Types of Social Support Exchanged by Survivors of Pediatric Stroke and Their Families in an Online Peer Support Community: Qualitative Thematic Analysis.

BACKGROUND: Pediatric stroke is relatively rare and underresearched, and there is little awareness of its occurrence in wider society. There is a paucity of literature on the effectiveness of interventions to improve rehabilitation and the services available to survivors. Access to online health communities through the internet may be a means of support for patients with pediatric stroke and their families during recovery; however, little research has been done in this area. OBJECTIVE: This study aims to identify the types of social support provided by an online peer support group to survivors of pediatric stroke and their families. METHODS: This was a qualitative thematic analysis of posts from a pediatric stroke population on a UK online stroke community active between 2004 and 2011. The population was split into 2 groups based on whether stroke survivors were aged ≤18 years or aged >18 years at the time of posting. The posts were read by 2 authors who used the adapted Social Support Behavior Code to analyze the types of social support exchanged. RESULTS: A total of 52 participants who experienced a pediatric stroke were identified, who posted a total of 425 messages to the community. About 41 survivors were aged ≤18 years at the time of posting and were written about by others (31/35 were mothers), while 11 were aged >18 years and were writing about themselves. Survivors and their families joined together in discussion threads. Support was offered and received by all participants, regardless of age. Of all 425 posts, 193 (45.4%) contained at least 1 instance of social support. All 5 types of social support were identified: informational, emotional, network, esteem support, and tangible aid. Informational and emotional support were most commonly exchanged. Emotional support was offered more often than informational support among participants aged ≤18 years at the time of posting; this finding was reversed in the group aged >18 years. Network support and esteem support were less commonly exchanged. Notably, the access subcategory of network support was not exchanged with the community. Tangible aid was the least commonly offered type of support. The exchanged social support provided insight into rehabilitation interventions and the unmet needs of pediatric stroke survivors. CONCLUSIONS: We found evidence of engagement of childhood stroke survivors and their families in an online stroke community, with peer support being exchanged between both long- and short-term survivors of pediatric stroke. Engagement of long-term survivors of pediatric stroke through the online community was key, as they were able to offer informational support from lived experience. Further interventional research is needed to assess health and rehabilitation outcomes from engagement with online support groups. Research is also needed to ensure safe, nurturing online communities.

Ethical and Information Governance Considerations for Promoting Digital Social Interventions in Primary Care.

Promoting online peer support beyond the informal sector to statutory health services requires ethical considerations and evidence-based knowledge about its impact on patients, health care professionals, and the wider health care system. Evidence on the effectiveness of digital interventions in primary care is sparse, and definitive guidance is lacking on the ethical concerns arising from the use of social media as a means for health-related interventions and research. Existing literature examining ethical issues with digital interventions in health care mainly focuses on apps, electronic health records, wearables, and telephone or video consultations, without necessarily covering digital social interventions, and does not always account for primary care settings specifically. Here we address the ethical and information governance aspects of undertaking research on the promotion of online peer support to patients by primary care clinicians, related to medical and public health ethics.

Non-randomised feasibility study testing a primary care intervention to promote engagement in an online health community for adults with troublesome asthma: protocol.

INTRODUCTION: In the UK, approximately 4.3 million adults have asthma, with one-third experiencing poor asthma control, affecting their quality of life, and increasing their healthcare use. Interventions promoting emotional/behavioural self-management can improve asthma control and reduce comorbidities and mortality. Integration of online peer support into primary care services to foster self-management is a novel strategy. We aim to co-design and evaluate an intervention for primary care clinicians to promote engagement with an asthma online health community (OHC). Our protocol describes a 'survey leading to a trial' design as part of a mixed-methods, non-randomised feasibility study to test the feasibility and acceptability of the intervention. METHODS AND ANALYSIS: Adults on the asthma registers of six London general practices (~3000 patients) will be invited to an online survey, via text messages. The survey will collect data on attitudes towards seeking online peer support, asthma control, anxiety, depression, quality of life, information on the network of people providing support with asthma and demographics. Regression analyses of the survey data will identify correlates/predictors of attitudes/receptiveness towards online peer support. Patients with troublesome asthma, who (in the survey) expressed interest in online peer support, will be invited to receive the intervention, aiming to reach a recruitment target of 50 patients. Intervention will involve a one-off, face-to-face consultation with a practice clinician to introduce online peer support, sign patients up to an established asthma OHC, and encourage OHC engagement. Outcome measures will be collected at baseline and 3 months post intervention and analysed with primary care and OHC engagement data. Recruitment, intervention uptake, retention, collection of outcomes, and OHC engagement will be assessed. Interviews with clinicians and patients will explore experiences of the intervention. ETHICS AND DISSEMINATION: Ethical approval was obtained from a National Health Service Research Ethics Committee (reference: 22/NE/0182). Written consent will be obtained before intervention receipt and interview participation. Findings will be shared via dissemination to general practices, conference presentations and peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05829265.

'I found it the only place that spoke the same language': a thematic analysis of messages posted to an online peer support discussion forum for people living with dementia.

BACKGROUND: Despite the proliferation of online support communities, little is known about how people with dementia engage with them. AIM: The aim of this study was to explore the content of messages exchanged between members of the asynchronous Talking Point online discussion forum. METHOD: Using the sub-forum 'I have dementia', 100 conversation threads were randomly selected yielding 863 individual messages for analysis. Our data set was subjected to reflexive thematic analysis. RESULTS: Three themes were generated: journeying through dementia, reciprocal peer support and therapeutic creativity. The findings suggest that individuals used the forum to share their experiences of obtaining and adjusting to a dementia diagnosis, their current symptoms and how they addressed the challenges of daily living as well as the impacts on mood, confidence and connectedness. The forum was viewed as a safe space to reflect on the future and what it might hold for them and loved ones. Throughout these discussions, users supported each other, particularly in relation to the emotional impact of diagnosis and shared experiential information and advice, with referrals to external sources of support commonplace. Discussion around the role of therapeutic creativity was evident and its role as a coping mechanism described. Through engagement, a sense of community and companionship was evident and new members welcomed, supported and encouraged to join in. DISCUSSION: The forum appears to be filling an important gap in post-diagnostic support provision, particularly for those with rare forms of dementia. Clinicians, support workers and organisations could consider recommending online support forums to people with dementia.

Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings.

BACKGROUND: Online support communities have become an accessible way of gaining social, emotional, and informational support from peers and may be particularly useful for individuals with chronic conditions. To date, there have been few studies exploring the online support available for tic disorders, such as Tourette syndrome. An exploratory study looking at users' experiences with using online support communities for tic disorders suggested that members used such communities to share experiences, information, and strategies for tic management. OBJECTIVE: To build on these preliminary findings, this study examined the provision of social support in an online community for Tourette syndrome. METHODS: Data were collected from one publicly available online support community for Tourette syndrome and tics, from its inception to December 2019, by randomly selecting 10% of posts and their corresponding comments from each year for analysis. This resulted in 510 unique posts and 3802 comments posted from 1270 unique usernames. The data were analyzed using inductive thematic analysis. RESULTS: The findings of this study suggest that users utilized the online community as a multifaceted virtual place where they could share and ask for information about tics, unload and share their feelings arising from living with Tourette syndrome, find people facing similar situations and experiences, and freely share the realities of living with Tourette syndrome. CONCLUSIONS: The results complement the findings from a preliminary study and suggest that online support communities have a potentially valuable role as a mechanism for sharing and gaining information on illness experiences from similar peers experiencing tics and can promote self-management of tics. Limitations and recommendations for future research are discussed.

The Role of Online Support Groups in Helping Individuals Affected by HIV and AIDS: Scoping Review of the Literature.

BACKGROUND: Online support groups provide opportunities for individuals affected by HIV and AIDS to seek information, advice, and support from peers. However, whether and how engagement with online support groups helps individuals affected by HIV and AIDS remains unclear, as does the nature of the evidence on this topic. OBJECTIVE: This scoping review sought to explore whether engagement with HIV and AIDS-related online support groups benefits members in terms of psychosocial well-being and illness management, whether members experienced any negative aspects of these groups, and what types of social support are exchanged within HIV and AIDS-related online support groups. METHODS: A scoping review of English-language articles (including both qualitative and quantitative studies) was undertaken using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. The databases searched included MEDLINE, PubMed, EMBASE, CINAHL, PsycINFO, CENTRAL (Cochrane Register of Controlled Trials), and Scopus. Key findings were synthesized using a narrative and thematic approach. RESULTS: A total of 22 papers met the inclusion criteria from an initial pool of 3332 abstracts. These papers included 23% (5/22) quantitative studies, 9% (2/22) mixed methods studies, and 68% (15/22) qualitative studies published between 2007 and 2019. Cross-sectional evidence suggests that engagement with HIV and AIDS-related online support groups is empowering for members and may lead to a range of psychosocial benefits. Furthermore, qualitative evidence suggests that these groups provide an opportunity to connect with similar people and share experiences. This can help improve self-worth, reduce stigma, facilitate improved illness management, and gain greater confidence when interacting with health professionals. However, online support groups are not without their limitations as qualitative evidence suggests that users may encounter examples of interpersonal conflict between members as well as be exposed to challenging content. Finally, HIV and AIDS-related online support groups are avenues through which individuals can solicit support, most commonly informational or emotional. CONCLUSIONS: HIV and AIDS-related online support groups may have some benefits for members, particularly in terms of providing social support. There is a need for a systematic review of this literature that includes an assessment of the methodological quality of the available evidence.

Comparative Optimism, Self-Superiority, Egocentric Impact Perception and Health Information Seeking: A COVID-19 Study.

We examined perceived self-other differences (self-uniqueness) in appraisals of one's risk of an infectious disease (COVID-19), one's adherence to behavioural precautionary measures against the disease, and the impact of these measures on one's life. We also examined the relationship of self-uniqueness with information seeking and trust in sources of information about the disease. We administered an online survey to a community sample (N = 8696) of Dutch-speaking individuals, mainly in Belgium and The Netherlands, during the first lockdown (late April-Mid June 2020). As a group, participants reported that they were less likely to get infected or infect others or to suffer severe outcomes than average (unrealistic optimism) and that they adhered better than average to behavioural precautionary measures (illusory superiority). Except for participants below 25, who reported that they were affected more than average by these measures (egocentric impact bias), participants also generally reported that they were less affected than average (allocentric impact bias). Individual differences in self-uniqueness were associated with differences in the number of information sources being used and trust on these sources. Higher comparative optimism for infection, self-superiority, and allocentric impact perception were associated with information being sought from fewer sources; higher self-superiority and egocentric impact perception were associated with lower trust. We discuss implications for health communication.

Web-Based Behavioral Intervention Utilizing Narrative Persuasion for HIV Prevention Among Chinese Men Who Have Sex With Men (HeHe Talks Project): Intervention Development.

BACKGROUND: In the era of potent antiretroviral therapy, a high level of condomless anal intercourse continues to drive increases in HIV incidence in recent years among men who have sex with men. Effective behavior change strategies for promoting HIV-preventive behaviors are warranted. Narrative persuasion is a novel health communication approach that has demonstrated its persuasive advantages in overcoming resistance to counterattitudinal messages. The efficacy of narrative persuasion in promoting health behavior changes has been well documented, but critical research gaps exist for its application to HIV prevention. OBJECTIVE: In this study, we aimed to (1) capitalize on narrative persuasion to design a web-based multisession intervention for reducing condomless anal intercourse among men who have sex with men in Hong Kong (the HeHe Talks Project) by following a systematic development process; and (2) describe the main components of the narrative intervention that potentially determine its persuasiveness. METHODS: Persuasive themes and subtopics related to reducing condomless anal intercourse were initially proposed based on epidemiological evidence. The biographic narrative interview method was used to elicit firsthand experiential stories from a maximum variation sample of local men who have sex with men with diverse backgrounds and experiences related to HIV prevention; different types of role models were established accordingly. Framework analysis was used to aggregate the original quotations from narrators into collective narratives under 6 intervention themes. A dedicated website was finally developed for intervention delivery. RESULTS: A series of video-based intervention messages in biographic narrative format (firsthand experiential stories shared by men who have sex with men) combined with topic-equivalent argumentative messages were produced and programmed into 6 intervention sessions. The 6-week intervention program can be automatically delivered and monitored online. CONCLUSIONS: We systematically created a web-based HIV prevention intervention derived from peer-generated stories. Strategies used to enhance the efficacy of the narrative intervention have been discussed within basic communication components. This paper describes the methods and experiences of the rigorous development of a narrative communication intervention for HIV prevention, which enables replication of the intervention in the future.

The Finding My Way UK Clinical Trial: Adaptation Report and Protocol for a Replication Randomized Controlled Efficacy Trial of a Web-Based Psychological Program to Support Cancer Survivors.

BACKGROUND: Cancer survivors frequently report a range of unmet psychological and supportive care needs; these often continue after treatment has finished and are predictive of psychological distress and poor health-related quality of life. Web-based interventions demonstrate good efficacy in addressing these concerns and are more accessible than face-to-face interventions. Finding My Way (FMW) is a web-based, psycho-educational, and cognitive behavioral therapy intervention for cancer survivors developed in Australia. Previous trials have demonstrated that FMW is acceptable, highly adhered to, and effective in reducing the impact of distress on quality of life while leading to cost savings through health resource use reduction. OBJECTIVE: This study aims to adapt the Australian FMW website for a UK cancer care context and then undertake a single-blinded, randomized controlled trial of FMW UK against a treatment-as-usual waitlist control. METHODS: To an extent, our trial design replicates the existing Australian randomized controlled trial of FMW. Following a comprehensive adaptation of the web resource, we will recruit 294 participants (147 per study arm) from across clinical sites in North West England and North Wales. Participants will have been diagnosed with cancer of any type in the last 6 months, have received anticancer treatment with curative intent, be aged ≥16 years, be proficient in English, and have access to the internet and an active email address. Participants will be identified and recruited through the National Institute for Health Research clinical research network. Measures of distress, quality of life, and health economic outcomes will be collected using a self-report web-based questionnaire at baseline, midtreatment, posttreatment, and both 3- and 6-month follow-up. Quantitative data will be analyzed using intention-to-treat mixed model repeated measures analysis. Embedded semistructured qualitative interviews will probe engagement with, and experiences of using, FMW UK and suggestions for future improvements. RESULTS: The website adaptation work was completed in January 2021. A panel of cancer survivors and health care professionals provided feedback on the test version of FMW UK. Feedback was positive overall, although minor updates were made to website navigation, inclusivity, terminology, and the wording of the Improving Communication and Sexuality and Intimacy content. Recruitment for the clinical trial commenced in April 2021. We aim to report on findings from mid-2023. CONCLUSIONS: Replication studies are an important aspect of the scientific process, particularly in psychological and clinical trial literature, especially in different geographical settings. Before replicating the FMW trial in the UK setting, content updating was required. If FMW UK now replicates Australian findings, we will have identified a novel and cost-effective method of psychosocial care delivery for cancer survivors in the United Kingdom. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 14317248; https://www.isrctn.com/ISRCTN14317248. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/31976.

Intervention Planning for the Tinnitus E-Programme 2.0, an Internet-Based Cognitive Behavioral Intervention for Tinnitus.

Purpose The purpose of this study is to comprehensively describe the intervention planning process for the Tinnitus E-Programme 2.0, an Internet-based cognitive behavioral intervention for tinnitus. Method Theory-, evidence-, and person-based approaches to intervention development were used. In Phase 1, quantitative systematic reviews were used to identify potentially effective intervention techniques and design features. Primary mixed-methods research involving adults with tinnitus explored the acceptability of the first version of the intervention. In Phase 2, person-based guiding principles highlighted key intervention design objectives and features to address needs of the intervention's target group (identified in Phase 1) to maximize its acceptability, feasibility of delivery, and effectiveness. Theory-based "behavioral analysis" and "logic modeling" comprehensively described intervention content and potential mechanisms of action. From this planning work, a prototype intervention was developed. Results The intervention design objectives outlined in the guiding principles were to (a) normalize tinnitus, (b) support users to maintain a regular relaxation practice, (c) minimize the worsening of users' tinnitus sensation, and (d) ensure the intervention is accessible to those with hearing loss. Behavioral analysis and logic modeling identified intervention processes (e.g., illness perceptions, beliefs about consequences, skills, goals) and purported mediators (acceptance of tinnitus, negative thinking, use of the cognitive skills tools for managing negative thoughts, and practicing regular relaxation) hypothesized to facilitate reductions in tinnitus symptom severity. Conclusions The guiding principles highlight key design objectives and features to consider when developing interventions for tinnitus. The logic model offers hypothesized mechanisms of action that can be tested in future process analyses.

'That's just how I am': a qualitative interview study to identify factors influencing engagement with a digital intervention for tinnitus self-management.

OBJECTIVES: To explore users' reactions to and expectations of the Tinnitus E-Programme 2.0, a digital cognitive behavioural intervention for tinnitus, and to identify contextual factors and mechanisms of action that may influence user engagement with the intervention. DESIGN: Qualitative interview study. METHODS: Think-aloud and semi-structured interviews were carried out with 19 people with tinnitus. Interviews explored participants' views of the intervention's information and advice, its wider intervention goals (e.g. behaviour change, self-management), and factors that may strengthen or impede users' engagement. Data were analysed using inductive thematic analysis, and findings were used to develop a conceptual model of user engagement with the intervention. RESULTS: Generally, participants expressed positive views of the intervention, its intervention components, and its design features. Identified contextual factors included pre-existing attitudes, beliefs, skills, and knowledge (e.g. perceptions of tinnitus symptom severity, openness to tinnitus management, and psychological techniques); previous experience of tinnitus management; and characteristics of the condition (e.g. heterogeneous nature of tinnitus, stage in healthcare journey). These contextual factors were hypothesized to influence engagement through four mechanisms of action: motivation to change tinnitus-related attitudes and behaviour; perceived personal relevance of the intervention; expectations of benefit; and appeal of the intervention techniques. CONCLUSIONS: This study demonstrated the acceptability of the Tinnitus E-Programme 2.0 amongst its target group, while highlighting potential areas for improvement in future intervention modifications. Our findings identified contextual factors that others developing interventions for tinnitus or cognitive behavioural interventions may wish to consider.

Genetic testing for Huntington's disease: A thematic analysis of online support community messages.

Huntington's disease is a fatal late-onset genetic illness that causes motor, cognitive and psychiatric disorders. Individuals considering genetic testing may benefit from online social support. This study investigates how genetic testing is discussed within health forums. A total of 337 messages written by 58 individuals were analysed using deductive thematic analysis. Discussions examined three themes: deciding to be tested (enquiring about symptoms and starting a new family), preparing for the test (information seeking and attending appointments) and receiving the results (positive and negative results). Forums can reduce the uncertainty of ambiguous symptoms and provide ongoing personalised support before, during and after a genetic test.

Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users' Experiences.

BACKGROUND: People living with a tic disorder (TD)-such as Tourette syndrome (TS)-experience many negative psychological and social challenges arising from chronic tics, such as stigmatization from peers and poorer quality of life, and these can impact upon their families too. It can be difficult for this population to access face-to-face support for tics, and so online support communities offer one avenue for support from peers facing similar experiences. However, little is known about how online support communities may be used by people with TS and other TDs, and by others (eg, parents, caregivers) supporting a person with TS/TD. OBJECTIVE: This study aimed to explore users' experiences of participation in online support communities for TS and TDs. METHODS: In total, 90 respondents (aged 13-62 years; 62% [56/90] female) from 13 countries completed an online survey exploring their experiences of using online support communities for TS and TDs. Respondents were people living with TS/TD themselves (n=68) or supportive others of someone with TS/TD (eg, parent, sibling, spouse; n=14), or both (n=8). The online survey contained open-ended questions eliciting their self-reported motivations for using online communities, their benefits and drawbacks of participation, and whether online support communities affected offline management of tics. Responses were analyzed using thematic analysis. RESULTS: Seven overarching themes captured experiences of using online support communities for TS/TDs. The overwhelming reason for their use was to find accessible support due to a lack of offline face-to-face support. Online support communities were valued sources of informational and emotional support, and also had a positive impact upon helping users' psychological well-being. Online communities helped provide a space where people with TS/TDs could feel accepted and reduce the social isolation they felt offline. The suggestible nature of tics and being reminded of the challenging nature of TDs were main disadvantages arising from using online support communities, alongside conflict arising within online communities. CONCLUSIONS: The findings suggest that online support communities appear to offer valuable informational and emotional support to those living with TS/TD and their families too, especially given the lack of locally available support. This facilitates a sense of community online, which can help users in overcoming long-standing social isolation and aid self-reported improvements in psychosocial well-being. Users reported some drawbacks in engaging with online support communities, such as conflict between different types of users and triggering content, which negatively affected experiences of community participation.

Comparative optimism about infection and recovery from COVID-19; Implications for adherence with lockdown advice.

BACKGROUND: Comparative optimism, the belief that negative events are more likely to happen to others rather than to oneself, is well established in health risk research. It is unknown, however, whether comparative optimism also permeates people's health expectations and potentially behaviour during the COVID-19 pandemic. OBJECTIVES: Data were collected through an international survey (N = 6485) exploring people's thoughts and psychosocial behaviours relating to COVID-19. This paper reports UK data on comparative optimism. In particular, we examine the belief that negative events surrounding risk and recovery from COVID-19 are perceived as more likely to happen to others rather than to oneself. METHODS: Using online snowball sampling through social media, anonymous UK survey data were collected from N = 645 adults during weeks 5-8 of the UK COVID-19 lockdown. The sample was normally distributed in terms of age and reflected the UK ethnic and disability profile. FINDINGS: Respondents demonstrated comparative optimism where they believed that as compared to others of the same age and gender, they were unlikely to experience a range of controllable (eg accidentally infect/ be infected) and uncontrollable (eg need hospitalization/ intensive care treatment if infected) COVID-19-related risks in the short term (P < .001). They were comparatively pessimistic (ie thinking they were more at risk than others for developing COVID-19-related infection or symptoms) when thinking about the next year. DISCUSSION: This is one of the first ever studies to report compelling comparative biases in UK adults' thinking about COVID-19.

Evaluating a Theoretically Informed and Cocreated Mobile Health Educational Intervention for First-Time Hearing Aid Users: Qualitative Interview Study.

BACKGROUND: Adults living with hearing loss have highly variable knowledge of hearing aids, resulting in suboptimal use or nonuse. This issue can be addressed by the provision of high-quality educational resources. OBJECTIVE: This study aims to assess the everyday experiences of first-time hearing aid users when using a newly developed, theoretically informed cocreated mobile health (mHealth) educational intervention called m2Hear. This intervention aims to deliver greater opportunities for individualization and interactivity compared with our previously developed multimedia intervention, C2Hear. METHODS: A total of 16 first-time hearing aid users trialed m2Hear for a period of 10-weeks in their everyday lives, after which individual semistructured interviews were completed. The data were analyzed using an established deductive thematic analysis procedure underpinned by the Capability, Opportunity, Motivation-Behavior model. The model stipulates that to engage in a target behavior, an individual must have physical and psychological capability, physical and social opportunity, and automatic and reflective motivation. RESULTS: Capability-m2Hear was viewed as a concise and comprehensive resource, suitable for a range of digital literacy skills. It was stated that m2Hear could be conveniently reused to provide useful reminders that facilitate knowledge of hearing aids and communication. Opportunity-m2Hear was simple and straightforward to use, enabling greater individualization and independence. The availability of m2Hear via mobile technologies also improved accessibility. Motivation-m2Hear provided greater support and reassurance, improving confidence and empowering users to self-manage their hearing loss. CONCLUSIONS: Overall, this qualitative study suggests that m2Hear supports first-time hearing aid users to successfully self-manage their hearing loss postfitting. Furthermore, this study demonstrates the utility of employing a combined theoretical and ecologically valid approach in the development of mHealth educational resources to meet the individual self-management needs of adults living with hearing loss. TRIAL REGISTRATION: ClinicalTrials.gov NCT03136718; https://clinicaltrials.gov/ct2/show/NCT03136718.

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

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

The development of an mHealth educational intervention for first-time hearing aid users: combining theoretical and ecologically valid approaches.

Objective: This paper describes the development of a novel mobile health (mHealth) educational intervention, called m2Hear, designed for first-time hearing aid users based on previously developed educational multimedia videos, or reusable learning objects (RLOs), branded C2Hear.Design: The development of m2Hear used theoretical and ecologically valid approaches. The COM-B model and associated Theoretical Domains Framework were employed to identify specific components (or "active ingredients") of the original RLOs that facilitate hearing aid use. An mHealth platform was then developed following an iterative, user-centred and participatory design approach.Study sample: Fifteen existing hearing aid users completed synchronous, real-time Think Aloud interviews. A sub-group of these participants (n = 5), along with patient and public involvement panel members (n = 4), subsequently reviewed the usability of the mHealth platform.Results: While factors associated with Capability featured strongly across all RLOs, topics relating to Opportunity and Motivation were also incorporated. The RLOs were broken-down into 42 shorter mobile-enhanced RLOs (or mRLOs). Each mRLO was labelled with a specific user-centred question generated from the Think Aloud interviews. The final mHealth platform was developed following four separate usability iterations.Conclusions: Overall, m2Hear provides greater opportunities for individualised learning and encourages greater interaction to facilitate self-management in first-time hearing aid users.

"They aren't all like that": Perceptions of clinical services, as told by self-harm online communities.

Self-harm is a critical public health issue, with strikingly low rates of attendance to clinical services. By offering support, anonymity, and open discussions, online communities hold useful insights into the factors which influence help-seeking behavior. We explore the perceptions of clinical services in three self-harm online communities to understand which services are being used and why. Message threads from each community were extracted randomly until saturation, providing 513 messages across 60 threads. A thematic analysis was performed resulting in four key themes: access to appropriate services during an episode of self-harm, service preference, fears surrounding disclosure, and support.

Understanding User Reactions and Interactions With an Internet-Based Intervention for Tinnitus Self-Management: Mixed-Methods Evaluation.

Purpose Internet-based interventions have the potential to reduce the disparity in access to psychological therapy that people with tinnitus currently experience. One example is the Tinnitus E-Programme, which, although freely available online, has not yet been formally evaluated. The purpose of this study was to evaluate past, current, and new users' reactions and interactions with the Tinnitus E-Programme. Method Study 1 used an online survey to gather past and current users' reactions to, and interactions with, the intervention (n = 27). Study 2 used interviews and a relaxation log to assess how new users implemented the skills they learned into their everyday lives (n = 13). Results Generally, users expressed positive views on the intervention content and design features. Users particularly valued the education about tinnitus and its management and the relaxation skills training, and use of these components was high. In contrast, user reactions to self-monitoring tools, an online support forum, and therapist support were mixed, and use was lower. Implementation was limited by instances of poor usability and accessibility, user engagement, and adherence to relaxation goals. Users' perceptions of the intervention's credibility and relevance and beliefs regarding a negative impact on their tinnitus influenced engagement. Users in both studies identified several benefits gained, including functional and emotional management, self-efficacy for managing and coping with tinnitus, understanding tinnitus and its management, social support, and acceptance of tinnitus. Conclusion Findings suggest that the intervention was acceptable to its target group but also highlighted some areas for improvement. These findings will be used to inform further optimization work.