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Caregiving can affect people of all ages and can have significant negative health impacts on family caregivers themselves. Research has shown that social support acts as a buffer against many negative health impacts. A common source of social support is support groups. Although traditionally, these groups were conducted in a face-to-face setting, the advent of the internet, social media applications, and the smartphone have seen online support groups (OSGs) develop as a space where many caregivers seek support. The number of OSGs has increased exponentially, but there is no clear consensus on what factors or characteristics of OSGs contribute to social support development within them or what types of OSGs are available to family caregivers. This study aimed to conduct a scoping review to contribute to the understanding of the types and characteristics of OSGs for family caregivers. Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines, the CINAHL, PsychInfo, Psych Articles, Social Sciences, Communication Source, Medline, and Web of Science databases were searched for studies (caregiver focused, adults aged 18 years or older, online social support groups, caring for a living person, peer-reviewed journal publications on empirical research). In total, 19 studies were included in the review. The research questions were (1) what type of social support groups are online for adult family caregivers, (2) what the communication mediums and characteristics of these OSGs are, and (3) what psychosocial or other factors make OSGs successful or unsuccessful for participants. In response to the first research question, we found that the majority of OSGs took place on public text-based forums and were illness specific. Where demographics were reported, participants were predominately women, White, and working with university-level education. There were a variety of caregiving relationships. For the second research question, the most common communication medium found was text-based communication, with the use of emojis, photos, and GIF (Graphics Interchange Format) files as part of these exchanges. Most frequently, the OSGs were asynchronous with a degree of anonymity, not time-limited by the frequency of contact or duration, and moderated by peer or professional moderators or facilitators. Results for the third research question explored the overarching categories of safe communication and engagement and group management. These described successful OSGs as having a focus on similar others with shared lived experiences communicated in a nonjudgmental space overseen by trained peer or professional facilitators. There are several key considerations for OSGs to be successful for family caregivers. A general recommendation for practitioners is to give importance to building active moderation and multifaceted structures of support to meet different levels of caregiver needs and the ability to engage.

BackgroundAs social media are evolving rapidly online support groups (OSG) are becoming increasingly important for patients. Therefore, the aim of our study was to compare the users of traditional face-to-face support groups and OSG.Patients and methodsWe performed a cross-sectional comparison study of all regional face-to-face support groups and the largest OSG in Germany. By applying validated instruments, the survey covered sociodemographic and disease-related information, decision-making habits, psychological aspects, and quality of life.ResultsWe analyzed the complete data of 955 patients visiting face-to-face support groups and 686 patients using OSG. Patients using OSG were 6 years younger (65.3 vs. 71.5 years; p < 0.001), had higher education levels (47 vs. 21%; p < 0.001), and had higher income. Patients using OSG reported a higher share of metastatic disease (17 vs. 12%; p < 0.001). Patients using OSG reported greater distress. There were no significant differences in anxiety, depression, and global quality of life. In the face-to-face support groups, patient ratings were better for exchanging information, gaining recognition, and caring for others. Patients using OSG demanded a more active role in the treatment decision-making process (58 vs. 33%; p < 0.001) and changed their initial treatment decision more frequently (29 vs. 25%; p < 0.001).ConclusionsBoth modalities of peer support received very positive ratings by their users and have significant impact on treatment decision-making.Implications for cancer survivorsOlder patients might benefit more from the continuous social support in face-to-face support groups. OSG offer low-threshold advice for acute problems to younger and better educated patients with high distress.Trial registrationwww.germanctr.de, number DRKS00005086

PatientsLikeMe is an online quantitative personal research platform for patients with life-changing illnesses to share their experience using patient-reported outcomes, find other patients like them matched on demographic and clinical characteristics, and learn from the aggregated data reports of others to improve their outcomes. The goal of the website is to help patients answer the question: \"Given my status, what is the best outcome I can hope to achieve, and how do I get there?\" Using a cross-sectional online survey, we sought to describe the potential benefits of PatientsLikeMe in terms of treatment decisions, symptom management, clinical management, and outcomes. Almost 7,000 members from six PatientsLikeMe communities (amyotrophic lateral sclerosis [ALS], Multiple Sclerosis [MS], Parkinson's Disease, human immunodeficiency virus [HIV], fibromyalgia, and mood disorders) were sent a survey invitation using an internal survey tool (PatientsLikeMe Lens). Complete responses were received from 1323 participants (19% of invited members). Between-group demographics varied according to disease community. Users perceived the greatest benefit in learning about a symptom they had experienced; 72% (952 of 1323) rated the site \"moderately\" or \"very helpful.\" Patients also found the site helpful for understanding the side effects of their treatments (n = 757, 57%). Nearly half of patients (n = 559, 42%) agreed that the site had helped them find another patient who had helped them understand what it was like to take a specific treatment for their condition. More patients found the site helpful with decisions to start a medication (n = 496, 37%) than to change a medication (n = 359, 27%), change a dosage (n = 336, 25%), or stop a medication (n = 290, 22%). Almost all participants (n = 1,249, 94%) were diagnosed when they joined the site. Most (n = 824, 62%) experienced no change in their confidence in that diagnosis or had an increased level of confidence (n = 456, 34%). Use of the site was associated with increasing levels of comfort in sharing personal health information among those who had initially been uncomfortable. Overall, 12% of patients (n = 151 of 1320) changed their physician as a result of using the site; this figure was doubled in patients with fibromyalgia (21%, n = 33 of 150). Patients reported community-specific benefits: 41% of HIV patients (n = 72 of 177) agreed they had reduced risky behaviors and 22% of mood disorders patients (n = 31 of 141) agreed they needed less inpatient care as a result of using the site. Analysis of the Web access logs showed that participants who used more features of the site (eg, posted in the online forum) perceived greater benefit. We have established that members of the community reported a range of benefits, and that these may be related to the extent of site use. Third party validation and longitudinal evaluation is an important next step in continuing to evaluate the potential of online data-sharing platforms.

The frenzy of postbirth events often takes a toll on mothers' mental well-being, leaving them susceptible to postpartum psychological disorders such as postnatal depression (PND). Social support has been found to be effective in restoring the emotional well-being of new mothers. Therefore, mothers need to be supported during the crucial postpartum period to buffer the negative after effects of childbirth and to promote healthier maternal well-being. This study aimed to evaluate the effectiveness of a technology-based peer-support intervention program (PIP) on maternal outcomes during the early postpartum period. A randomized, parallel-armed controlled trial was conducted. The study recruited 138 mothers (69 in intervention group, 69 in control group) at risk of PND from a tertiary hospital in Singapore. To support these mothers, 20 peer volunteers were recruited by word of mouth and trained by a psychiatrist in social support skills before the intervention commenced. The 4-week-long intervention included a weekly follow-up with a peer volunteer through phone calls or text messages. The intervention group received peer support in addition to the standard care offered by the hospital. The control group only received postnatal standard care. Maternal outcomes (PND, postnatal anxiety [PNA], loneliness, and perceived social support) were measured with reliable and valid instruments. Data were collected immediately postpartum, at 1 month postpartum and at 3 months postpartum. The general linear model was used to compare the groups for postpartum percentage changes in the outcome variables at first and third months, and the linear mixed model was used to compare the trend over the study period. There was a statistically significant difference in Edinburgh Postnatal Depression Scale scores (d=-2.11; 95% CI -4.0 to -0.3; P=.03) between the intervention and control groups at 3 months postpartum after adjusting for covariates. The intervention group had a significant change over time compared with the control group. The technology-based PIP was found to be effective in reducing the risk of PND among new mothers and showed a generally positive trend in reducing PNA and loneliness and increasing perceived social support. This study highlights the importance of training paraprofessionals to provide needed support for new mothers postpartum. A further long-term evaluation of the PIP on maternal and family outcomes and its cost-effectiveness is needed to inform clinical practices. ISRCTN Registry ISRCTN14864807; https://www.isrctn.com/ISRCTN14864807. RR2-10.2196/resprot.9416.

The use of health-related online peer support groups to support self-management of health issues has become increasingly popular. The quality of information and advice may have important implications for public health and for the utility of such groups. There is some evidence of variable quality of web-based health information, but the extent to which misinformation is a problem in online peer support groups is unclear. We aimed to gain insight into the quality of information and advice about health conditions in online peer support groups and to review the tools available for assessing the quality of such information. A scoping review was undertaken following the Joanna Briggs Institute scoping review methodology. We searched electronic databases (MEDLINE [Ovid], CINAHL, Web of Science, ASSIA, ProQuest Dissertation and Theses, and Google Scholar) for literature published before November 2023, as well as citations of included articles. Primary research studies, reviews, and gray literature that explored the quality of information and advice in online peer support groups were included. Title and abstracts were independently screened by 2 reviewers. Data were extracted and tabulated, and key findings were summarized narratively. A total of 14 (0.45%) relevant articles, from 3136 articles identified, were included. Of these, 10 (71%) were primary research articles comprising diverse quality appraisal methodologies, and 4 (29%) were review articles. All articles had been published between 2014 and 2023. Across the literature, there was more evidence of poor quality information and misinformation than of good quality information and advice, particularly around long-term and life-threatening conditions. There were varying degrees of misinformation about non-life-threatening conditions and about mental health conditions. Misinformation about noncommunicable diseases was reported as particularly prevalent on Facebook. Fellow online peer support group users often played an active role in correcting misinformation by replying to false claims or providing correct information in subsequent posts. Quality appraisal tools were reported as being used by researchers and health care professionals in appraising the quality of information and advice, including established tools for the appraisal of health-related information (eg, DISCERN, HONcode criteria, and Journal of the American Medical Association benchmark criteria). No tools reported were specifically designed to appraise online peer support group content. While there is good quality information and advice exchanged between users in online peer support groups, our findings show that misinformation is a problem, which is a matter of public health concern. Confidence in the quality of information shared may determine the utility of online peer support groups for patients and health care professionals. Our review suggests that clinical and academic experts in health conditions could play a valuable role in ensuring the quality of content. Several quality appraisal tools are available to support such an initiative.

Depression is a major contributor to the burden of disease in the adolescent population. Internet-based interventions can increase access to treatment. To evaluate the efficacy of internet-based cognitive-behavioural therapy (iCBT), including therapist chat communication, in treatment of adolescent depression. Seventy adolescents, 15-19 years of age and presenting with depressive symptoms, were randomised to iCBT or attention control. The primary outcome was the Beck Depression Inventory II (BDI-II). Significant reductions in depressive symptoms were found, favouring iCBT over the control condition (F(1,67) = 6.18,  < 0.05). The between-group effect size was Cohen's  = 0.71 (95% CI 0.22-1.19). A significantly higher proportion of iCBT participants (42.4%) than controls (13.5%) showed a 50% decrease in BDI-II score post-treatment (  < 0.01). The improvement for the iCBT group was maintained at 6 months. The intervention appears to effectively reduce symptoms of depression in adolescents and may be helpful in overcoming barriers to care among young people. N.T. and G.A. designed the programme. N.T. authored the treatment material. The web platform used for treatment is owned by Linköping University and run on a non-for-profit basis. None of the authors receives any income from the programme.

IntroductionIdiopathic inflammatory myopathies (IIM) are heterogeneous and complex, and routine consultation can be overwhelming for patients, or sometimes so rushed that patients feel unable to discuss their needs and wishes adequately. As a result, online patient support groups (PSGs) on social media platforms like Facebook may help provide them with information they are seeking, and the support of the patient community who are living with this condition. Our goal is to explore the current landscape of PSGs in IIM to discuss the future of such groups and their role in supporting patient-driven self-management of complex connective tissue diseases.MethodsWe investigated factors that influence engagement in publicly accessible support groups on Facebook for patients with myositis. We analysed posts from myositis-related Facebook groups and pages between July 10, 2022, and October 2022. Data were extracted from each post, including presentation format (text, picture, video or mixed media) and content type (news, personal feelings or information). To gauge the post’s impact, we measured engagement metrics, such as likes, comments, shares and reactions.ResultsNearly three-quarters of the groups were private. Among the open ones, most posts seem to comprise pictures with text. Notably, engagement levels were higher for multimedia posts, with the exception of comments in groups, where engagement was comparatively lower.In terms of content, the majority of posts fell under the ‘personal’ category, followed by ‘information’ and ‘news’ posts, with information posts in groups receiving the most interactions. Moreover, groups exhibited higher total engagement compared to pages when considering all posts cumulatively.ConclusionsOur observations indicate that patients with myositis seek information on the condition online, and the multimedia nature of content presentation significantly influences engagement. These digital forums serve as valuable platforms for fostering connections among diverse individuals, providing a perceived safe space for sharing their personal experiences and varied perspectives, and potentially mitigating social isolation.Key Points• Patient support groups on myositis are a key source of support and information for patients.• Public posts with multimedia content garner the most engagement.• The majority of posts are personal in nature, with a smaller proportion of content providing news or information.

Caring for children with rare genetic disorders is challenging due to complex medical needs and limited information. Often, information is scarce due to geographical dispersion and lack of access to expertise. Social media groups are increasingly used in parenting and in healthcare as tools for data sharing and acquisition, and online peer support. Online groups relating to specific rare diseases are increasingly used by parents navigating the difficulties of understanding their child's diagnosis and providing them with support. Parents expect professionals to interact with them about information reported from online groups, but little is known regarding the content within these groups and the impact on families. We aimed to synthesize current knowledge of social media use among parents and caregivers of children with a rare genetic syndrome to inform how these data might be used in parent-doctor interactions and in the research setting. We completed a comprehensive literature review across Web of Science, PubMed, and PsycINFO using a search strategy with themes of caregivers, rare genetic disease, and social media. Studies published in English from 2005 onwards, with parents and caregivers as a cohort and a focus on rare genetic diseases, were included. In total, 159 articles were identified, which underwent a title sift followed by an abstract sift based on inclusion and exclusion criteria. Reference lists of included articles were also reviewed. A total of 12 studies were included, and a critical synthesis methodology was used to extract relevant points. Most parents and caregivers use social media platforms, especially Facebook (Meta Platforms, Inc), particularly the group function. They are using social media groups as a tool for finding information related to their child's rare genetic disease. A majority also engaged in online groups by sharing information and contributions of their own. This review highlights that caregivers are seeking three main types of support from social media: (1) medical information around diagnosis and treatments, (2) practical tips on care needs and equipment, and (3) social support, involving connection with other families who shared similar experiences. The use of social media improved accessibility to information regardless of time or geography and reduced feelings of isolation. Caregivers felt empowered in decision-making, and their interactions with health care professionals improved. Challenges include misinformation, concerns around privacy, emotional impacts of comparison, and a lack of online spaces for the rarest conditions. Social media is a key tool for caregivers of children with rare genetic diseases. Addressing the associated challenges and harnessing the potential of these platforms can positively impact these families. Health care providers should consider discussing social media engagement in conversations with caregivers, and future research should focus on larger, longitudinal studies to explore the impacts of social media engagement.

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. 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. 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. 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. 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.

The trend towards the use of the Internet for health information purposes is rising. Utilization of various forms of social media has been a key interest in consumer health informatics (CHI). To reveal the information needs of autism-affected users, this study centers on the research of users’ interactions and information sharing within autism communities on social media. It aims to understand how autism-affected users utilize support groups on Facebook by applying natural language process (NLP) techniques to unstructured health data in social media. An interactive visualization method (pyLDAvis) was employed to evaluate produced models and visualize the inter-topic distance maps. The revealed topics (e.g., parenting, education, behavior traits) identify issues that individuals with autism were concerned about on a daily basis and how they addressed such concerns in the form of group communication. In addition to general social support, disease-specific information, collective coping strategies, and emotional support were provided as well by group members based on similar personal experiences. This study concluded that Latent Dirichlet Allocation (LDA) is feasible and appropriated to derive topics (focus) from messages posted to the autism support groups on Facebook. The revealed topics help healthcare professionals (content providers) understand autism from users’ perspectives and provide better patient communications.