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.

'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.

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.

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.

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.

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.

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.

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.

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.

How Online Communities of People With Long-Term Conditions Function and Evolve: Network Analysis of the Structure and Dynamics of the Asthma UK and British Lung Foundation Online Communities.

BACKGROUND: Self-management support can improve health and reduce health care utilization by people with long-term conditions. Online communities for people with long-term conditions have the potential to influence health, usage of health care resources, and facilitate illness self-management. Only recently, however, has evidence been reported on how such communities function and evolve, and how they support self-management of long-term conditions in practice. OBJECTIVE: The aim of this study is to gain a better understanding of the mechanisms underlying online self-management support systems by analyzing the structure and dynamics of the networks connecting users who write posts over time. METHODS: We conducted a longitudinal network analysis of anonymized data from 2 patients' online communities from the United Kingdom: the Asthma UK and the British Lung Foundation (BLF) communities in 2006-2016 and 2012-2016, respectively. RESULTS: The number of users and activity grew steadily over time, reaching 3345 users and 32,780 posts in the Asthma UK community, and 19,837 users and 875,151 posts in the BLF community. People who wrote posts in the Asthma UK forum tended to write at an interval of 1-20 days and six months, while those in the BLF community wrote at an interval of two days. In both communities, most pairs of users could reach one another either directly or indirectly through other users. Those who wrote a disproportionally large number of posts (the superusers) represented 1% of the overall population of both Asthma UK and BLF communities and accounted for 32% and 49% of the posts, respectively. Sensitivity analysis showed that the removal of superusers would cause the communities to collapse. Thus, interactions were held together by very few superusers, who posted frequently and regularly, 65% of them at least every 1.7 days in the BLF community and 70% every 3.1 days in the Asthma UK community. Their posting activity indirectly facilitated tie formation between other users. Superusers were a constantly available resource, with a mean of 80 and 20 superusers active at any one time in the BLF and Asthma UK communities, respectively. Over time, the more active users became, the more likely they were to reply to other users' posts rather than to write new ones, shifting from a help-seeking to a help-giving role. This might suggest that superusers were more likely to provide than to seek advice. CONCLUSIONS: In this study, we uncover key structural properties related to the way users interact and sustain online health communities. Superusers' engagement plays a fundamental sustaining role and deserves research attention. Further studies are needed to explore network determinants of the effectiveness of online engagement concerning health-related outcomes. In resource-constrained health care systems, scaling up online communities may offer a potentially accessible, wide-reaching and cost-effective intervention facilitating greater levels of self-management.

Development of the Social Participation Restrictions Questionnaire (SPaRQ) through consultation with adults with hearing loss, researchers, and clinicians: a content evaluation study.

OBJECTIVE: This research aimed to evaluate the content of the Social Participation Restrictions Questionnaire (SPaRQ) in terms of its relevance, clarity, comprehensiveness, acceptability to adults with hearing loss, and responsiveness. DESIGN: Cognitive interviews and a subject matter expert survey were conducted. The interview data were analysed using thematic analysis and a taxonomy of questionnaire clarity problems. Descriptive statistics were calculated for the survey data. STUDY SAMPLE: Fourteen adults with hearing loss participated in the cognitive interviews. Twenty clinicians and academics completed the subject matter expert survey. RESULTS: The majority of the SPaRQ content was found to be relevant, clear, comprehensive, and acceptable. However, an important clarity problem was identified: many adults with hearing loss struggled to switch from answering positively worded items (e.g. "I can attend social gatherings") to answering negatively-worded items (e.g. "I feel isolated"). Several subject matter experts found responsiveness difficult to assess. The SPaRQ was amended where necessary. CONCLUSION: Few hearing-specific questionnaires have undergone content evaluation. This study highlights the value of content evaluation as a means of identifying important flaws and improving the quality of a measure. The next stage of this research is a psychometric evaluation of the measure.

Therapeutic Affordances of Online Support Group Use in Women With Endometriosis.

BACKGROUND: The Internet has provided women living with endometriosis new opportunities to seek support online. Online support groups may provide a range of therapeutic affordances that may benefit these women. OBJECTIVE: To examine the presence of therapeutic affordances as perceived by women who use endometriosis online support groups. METHODS: Sixty-nine women (aged 19-50 years, mean 34.2 years; 65.2% (45/69) United Kingdom, 21.7% (15/69) United States) participated in a Web-based interview exploring online support group use. Participants had been using online support groups for an average of 2 years and 4 months (range = 1 month to 14 years, 9 months). Responses were analyzed using inductive thematic analysis. RESULTS: The analysis revealed 4 therapeutic affordances related to online support group use: (1) "connection," that is, the ability to connect in order to support each other, exchange advice, and to try to overcome feelings of loneliness; (2) "exploration," that is, the ability to look for information, learn, and bolster their knowledge; (3) "narration," that is, the ability to share their experiences, as well as read about the experiences of others; and (4) "self-presentation," that is, the ability to manage how they present themselves online. The associated outcomes of use were predominantly positive, such as reassurance and improved coping. However, a number of negative aspects were revealed including the following: concerns about the accuracy of information, arguments between members, overreliance on the group, becoming upset by negative experiences or good news items, and confidentiality of personal information. CONCLUSIONS: Our findings support the previously proposed SCENA (Self-presentation, Connection, Exploration, Narration, and Adaptation) model and reveal a range of positive aspects that may benefit members, particularly in relation to reassurance and coping. However, negative aspects need to be addressed to maximize the potential benefit of support groups. Some of these can be addressed relatively easily through making privacy policies clearer, including health professionals to moderate content, and structuring forums to encourage the sharing of positive stories.

The Pros and Cons of Getting Engaged in an Online Social Community Embedded Within Digital Cognitive Behavioral Therapy for Insomnia: Survey Among Users.

BACKGROUND: Sleepio is a proven digital sleep improvement program based on cognitive behavioral therapy techniques. Users have the option to join an online community that includes weekly expert discussions, peer-to-peer discussion forums, and personal message walls. OBJECTIVE: The aim of this study was to conduct an online survey to (1) explore the reasons for deciding to engage with the Sleepio online community, (2) explore the potential benefits arising from engagement with the online community, and (3) identify and describe any problematic issues related to use of the online community. METHODS: We developed an online survey and posted an invitation to the community discussion forum inviting users to participate. In addition, we sent an email invitation to 970 individuals who had previously or were currently working through the Sleepio program to participate in this study. RESULTS: In total, 100 respondents (70/100, 70% female; mean age 51 years, range 26-82 years) completed the online survey. Most respondents had started Sleepio with chronic sleep problems (59/100, 59% up to 10 years; 35/100, 35% >10 years) and had actively engaged with the online community (85/100, 85%) had made a discussion or wall post). At the time of the survey, respondents had used Sleepio for a median of 12 weeks (range from 3 weeks to 2 years). We analyzed responses to the open-ended questions using thematic analysis. This analysis revealed 5 initial drivers for engagement: (1) the desire to connect with people facing similar issues, (2) seeking personalized advice, (3) curiosity, (4) being invited by other members, and (5) wanting to use all available sleep improvement tools. Advantages of engagement included access to continuous support, a reduced sense of isolation, being part of a nonjudgmental community, personalized advice, positive comparisons with others, encouragement to keep going, and altruism. We found 5 potential disadvantages: design and navigation issues, uncertain quality of user-generated content, negative comparisons with others, excessive time commitments, and data privacy concerns. Participants related their community experiences to engagement with the Sleepio program, with many stating it had supported their efforts to improve their sleep, as well as helping with adherence and commitment to the program. Despite some concerns, members regarded the Sleepio community as a valuable resource. CONCLUSIONS: Online communities may be a useful means through which to support long-term engagement with Web-based therapy for insomnia.

Applying theories of health behaviour and change to hearing health research: Time for a new approach.

OBJECTIVE: In recent years, there has been an increase in the application of behavioural models, such as social cognition models, to the promotion of hearing health. Despite this, there exists a well-developed body of literature that suggests such models may fail to consistently explain reliable amounts of variability in human behaviours. DESIGN: This paper provides a summary of this research across selected models of health-related behaviour, outlining the current state of the evidence. RESULTS: Recent work in the field of behaviour change is presented together with commentary on the design and reporting of behaviour change interventions. CONCLUSIONS: We propose that attempts to use unreliable models to explain and predict hearing health behaviours should now be replaced by work which integrates the latest in behaviour change science, such as the Behaviour Change Wheel and Theoretical Domains Framework.

Understanding the psychosocial experiences of adults with mild-moderate hearing loss: An application of Leventhal's self-regulatory model.

OBJECTIVE: This study explored the psychosocial experiences of adults with hearing loss using the self-regulatory model as a theoretical framework. The primary components of the model, namely cognitive representations, emotional representations, and coping responses, were examined. DESIGN: Individual semi-structured interviews were conducted. The data were analysed using an established thematic analysis procedure. STUDY SAMPLE: Twenty-five adults with mild-moderate hearing loss from the UK and nine hearing healthcare professionals from the UK, USA, and Canada were recruited via maximum variation sampling. RESULTS: Cognitive representations: Most participants described their hearing loss as having negative connotations and consequences, although they were not particularly concerned about the progression or controllability/curability of the condition. Opinions differed regarding the benefits of understanding the causes of one's hearing loss in detail. Emotional representations: negative emotions dominated, although some experienced positive emotions or muted emotions. Coping responses: engaged coping (e.g. hearing aids, communication tactics) and disengaged coping (e.g. withdrawal from situations, withdrawal within situations): both had perceived advantages and disadvantages. CONCLUSIONS: This novel application of the self-regulatory model demonstrates that it can be used to capture the key psychosocial experiences (i.e. perceptions, emotions, and coping responses) of adults with mild-moderate hearing loss within a single, unifying framework.

The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities: A qualitative study.

Research suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women with intellectual disabilities to access cervical screening in order to examine their role in promoting attendance and elucidate potential barriers and facilitators to uptake. Ten participants recruited from a specialist learning disability service completed a semi-structured interview and data were analysed using experiential thematic analysis. Identified individual barriers included limited health literacy, negative attitudes and beliefs and competing demands; barriers attributed to primary care professionals included time pressures, limited exposure to people with intellectual disabilities and lack of appropriate knowledge, attitudes and skills. Attendance at cervical screening was facilitated by prolonged preparation work undertaken by learning disability nurses, helpful clinical behaviours in the primary care context and effective joint working.

A qualitative investigation of the impact of peer to peer online support for women living with polycystic ovary syndrome.

BACKGROUND: Polycystic Ovary Syndrome is a common, chronic condition which affects women living with the condition both physically and psychologically. Social support may be beneficial to sufferers in coping with chronic conditions and the Internet is becoming a common place for accessing social support and information. The aim of this study was to consider the experiences of women living with Polycystic Ovary Syndrome who access and participate in an online support group discussion forum dedicated to issues surrounding this condition. METHODS: Fifty participants responded to a series of open-ended questions via an online survey. RESULTS: Thematic analysis revealed a number of empowering and disempowering experiences associated with online support group participation. The empowering processes reported by members of the group included: Connecting with others who understand; Access to information and advice; Interaction with healthcare professionals; Treatment-related decision making; Improved adjustment and management. In terms disempowering processes, only two were described by group participants: Reading about the negative experiences of others and Feeling like an outsider. CONCLUSIONS: For women living with Polycystic Ovary Syndrome, participation within an online support group may help to empower them in a range of important ways however, there may be some disempowering consequences.

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.