Naturally Occurring Peer Support through Social Media: The Experiences of Individuals with Severe Mental Illness Using YouTube

Increasingly, people with diverse health conditions turn to social media to share their illness experiences or seek advice from others with similar health concerns. This unstructured medium may represent a platform on which individuals with severe mental illness naturally provide and receive peer support. Peer support includes a system of mutual giving and receiving where individuals with severe mental illness can offer hope, companionship, and encouragement to others facing similar challenges. In this study we explore the phenomenon of individuals with severe mental illness uploading videos to YouTube, and posting and responding to comments as a form of naturally occurring peer support. We also consider the potential risks and benefits of self-disclosure and interacting with others on YouTube. To address these questions, we used qualitative inquiry informed by emerging techniques in online ethnography. We analyzed n = 3,044 comments posted to 19 videos uploaded by individuals who self-identified as having schizophrenia, schizoaffective disorder, or bipolar disorder. We found peer support across four themes: minimizing a sense of isolation and providing hope; finding support through peer exchange and reciprocity; sharing strategies for coping with day-to-day challenges of severe mental illness; and learning from shared experiences of medication use and seeking mental health care. These broad themes are consistent with accepted notions of peer support in severe mental illness as a voluntary process aimed at inclusion and mutual advancement through shared experience and developing a sense of community. Our data suggest that the lack of anonymity and associated risks of being identified as an individual with severe mental illness on YouTube seem to be overlooked by those who posted comments or uploaded videos. Whether or not this platform can provide benefits for a wider community of individuals with severe mental illness remains uncertain

"People Power" or "Pester Power"?:YouTube as a Forum for the Generation of Evidence and Patient Advocacy

OBJECTIVE: Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences. METHODS: Content analysis on the 100 most viewed videos from over 4000 identified in a search for 'CCSVI', and qualitative thematic analysis on popular 'channels' demonstrating patients' experiences. RESULTS: Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS. CONCLUSION: Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of 'evidence' built on a hybrid of personal experience and medical knowledge. PRACTICE IMPLICATIONS: Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered 'evidence-based', practitioners should enhance their understanding of what 'experiential-evidence' is deemed significant to patients, particularly in contested areas of healthcare

Naturally Occurring Peer Support through Social Media: The Experiences of Individuals with Severe Mental Illness Using YouTube

Increasingly, people with diverse health conditions turn to social media to share their illness experiences or seek advice from others with similar health concerns. This unstructured medium may represent a platform on which individuals with severe mental illness naturally provide and receive peer support. Peer support includes a system of mutual giving and receiving where individuals with severe mental illness can offer hope, companionship, and encouragement to others facing similar challenges. In this study we explore the phenomenon of individuals with severe mental illness uploading videos to YouTube, and posting and responding to comments as a form of naturally occurring peer support. We also consider the potential risks and benefits of self-disclosure and interacting with others on YouTube. To address these questions, we used qualitative inquiry informed by emerging techniques in online ethnography. We analyzed n = 3,044 comments posted to 19 videos uploaded by individuals who self-identified as having schizophrenia, schizoaffective disorder, or bipolar disorder. We found peer support across four themes: minimizing a sense of isolation and providing hope; finding support through peer exchange and reciprocity; sharing strategies for coping with day-to-day challenges of severe mental illness; and learning from shared experiences of medication use and seeking mental health care. These broad themes are consistent with accepted notions of peer support in severe mental illness as a voluntary process aimed at inclusion and mutual advancement through shared experience and developing a sense of community. Our data suggest that the lack of anonymity and associated risks of being identified as an individual with severe mental illness on YouTube seem to be overlooked by those who posted comments or uploaded videos. Whether or not this platform can provide benefits for a wider community of individuals with severe mental illness remains uncertain

Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study

BACKGROUND: Limited research evidence exists on the development of web-based platforms for reciprocal communication, coproduction research, and dissemination of information among parents, professionals, and researchers. This paper provides learning and the outcomes of setting up a bespoke web-based platform using social media. OBJECTIVE: This study aims to explore the establishment of a web-based, multicontextual research communication platform for parents and stakeholders of children with congenital anomalies using social media and to identify associated research and ethical and technical challenges. METHODS: The ConnectEpeople e-forum was developed using social media platforms with a stakeholder engagement process. A multilevel approach was implemented for reciprocal engagement between parents of children with congenital anomalies, researchers, health care professionals, and other stakeholders using private and invisible and public Facebook groups, closed Twitter groups, and YouTube. Ethical approval was obtained from Ulster University. RESULTS: Nonprofit organizations (N=128) were invited to engage with an initial response rate of 16.4% (21/128). Of the 105 parents contacted, 32 entered the private and invisible Facebook groups to participate in the coproduction research. Public Facebook page followers rose to 215, a total of 22 posts had an engagement of >10%, and 34 posts had a reach of over 100. Webinars included requested information on childhood milestones and behavior. YouTube coverage included 106 ConnectEpeople videos with 28,708 impressions. Project information was obtained from 35 countries. The highest Facebook activity occurred during the early morning hours. Achievement of these results required dedicated time management, social media expertise, creativity, and sharing knowledge to curate valuable content. CONCLUSIONS: Building and maintaining a multilayered online forum for coproduction and information sharing is challenging. Technical considerations include understanding the functionality and versatility of social media metrics. Social media offers valuable, easily accessible, quantitative, and qualitative data that can drive the reciprocal process of forum development. The identification and integration of the needs of the ConnectEpeople e-forum was a key driver in the dissemination of useful, meaningful, and accessible information. The necessary dedicated administration to respond to requests and posts and collate data required significant time and effort. Participant safety, the development of trust, and the maintenance of confidentiality were major ethical considerations. Discussions on social media platforms enabled parents to support each other and their children. Social media platforms are particularly useful in identifying common family needs related to early childhood development. This research approach was challenging but resulted in valuable outputs requiring further application and testing. This may be of particular importance in response to COVID-19 or future pandemics. Incorporating flexible, adaptable social media strategies into research projects is recommended to develop effective platforms for collaborative and impactful research and dissemination

Using Social Media to build a Counter-Power Movement: Multiple Sclerosis and CCSVI, a Case Study

The research is focused on a patient-based social media movement which advocated for clinical research into a discovery rejected by key elements of the medical establishment. This thesis aims to examine how social media interactions empowered patients, what motivated them to become a movement, and the elements which propelled the movement to create alternative patient associations. This research comprises 62 individual, in-person, audio-recorded interviews with movement activists, and the researcher’s autoethnography as the founder and administrator of the movement’s Facebook Page. These methods are triangulated with academic publications, newspaper and television news, as well as other publicly-sourced materials relating to the case study. The research finds that while the movement’s activities, from planning through protest, occurred solely on the streets of social media, activists experienced the same passion and urgency as the academic literature has described for on-the-street activists. That is, social media paralleled the “real streets” as a forum for the movement’s core activities. The research further finds that the traditional patient associations’ initial strategy of stonewalling the contested discovery was undercut by the momentum of the social media movement’s activities. They subsequently sought to quell the movement by lambasting social media as well as deploying a co-optation strategy, as described by the activists. To conclude, social media function as streets and city halls where decisions taken can be implemented in the real world and permit geographically distributed as well as differently abled people to gather in significant numbers. The space where human interactions can foster social life and deepen personal emotional relations could be named the space of humanity. This is the space where timeless time and the realities of the counter power experience can happen, independent of whether that space is surrounded by real or digital bricks

Privacy and information security risks in a technology platform for home-based chronic disease rehabilitation and education

Background Privacy and information security are important for all healthcare services, including home-based services. We have designed and implemented a prototype technology platform for providing home-based healthcare services. It supports a personal electronic health diary and enables secure and reliable communication and interaction with peers and healthcare personnel. The platform runs on a small computer with a dedicated remote control. It is connected to the patient’s TV and to a broadband Internet. The platform has been tested with home-based rehabilitation and education programs for chronic obstructive pulmonary disease and diabetes. As part of our work, a risk assessment of privacy and security aspects has been performed, to reveal actual risks and to ensure adequate information security in this technical platform. Methods Risk assessment was performed in an iterative manner during the development process. Thus, security solutions have been incorporated into the design from an early stage instead of being included as an add-on to a nearly completed system. We have adapted existing risk management methods to our own environment, thus creating our own method. Our method conforms to ISO’s standard for information security risk management. Results A total of approximately 50 threats and possible unwanted incidents were identified and analysed. Among the threats to the four information security aspects: confidentiality, integrity, availability, and quality; confidentiality threats were identified as most serious, with one threat given an unacceptable level of High risk. This is because health-related personal information is regarded as sensitive. Availability threats were analysed as low risk, as the aim of the home programmes is to provide education and rehabilitation services; not for use in acute situations or for continuous health monitoring. Conclusions Most of the identified threats are applicable for healthcare services intended for patients or citizens in their own homes. Confidentiality risks in home are different from in a more controlled environment such as a hospital; and electronic equipment located in private homes and communicating via Internet, is more exposed to unauthorised access. By implementing the proposed measures, it has been possible to design a home-based service which ensures the necessary level of information security and privacy.publishedVersio

How People With Multiple Sclerosis Experience Web-Based Instructional Technologies

People with the autoimmune disease multiple sclerosis (MS) have few options for educational activities. Although web-based instruction may be a viable option, little is known about how people with MS perceive this form of learning. The purpose of this qualitative study was to understand the experiences of people with MS regarding web- based instruction. The 3 learning structures--differentiated instruction, collaborative learning, and assistive technology--provided the conceptual framework for this research. Nine volunteers from the Pacific Northwest area of the United States who have MS were individually interviewed for this basic qualitative study. Transcripts were analyzed using open, axial, and selective coding. The results indicated that all participants found personal and professional benefits of their experience with web-based instruction and used course management systems to successfully communicate with instructors or peers. Participants also noted that these management systems did not directly aggravate their MS disease symptoms. Findings from the study may be useful information to individuals with MS for effectively managing their educational choices. This study\u27s results could also be used by learning institutions to improve the access to education and allow individuals with MS to more fully participate in training opportunities

Community building and knowledge sharing by individuals with disabilities using social media

The use of social media to share information, enhance learning, and connect with an online community has grown rapidly over the past 10 years. As social media becomes a more common tool in both formal and informal education, it is imperative to under- stand how it is used by individuals with disabilities. Through a systematic study of the literature, 215 articles on social media used by individuals with disabilities were selected and 29 selected for in‐depth thematic analysis. Six major themes were iden- tified: community, cyberbullying, self‐esteem, self‐determination, access to technology, and accessibility. To confirm these six categories, we expanded our search, yielding an additional 30 articles, for a total 59 articles reviewed in‐depth. Interactions between individuals with disabilities within online communities often had the goal of acquiring knowledge or learning new information. A communities of practice theo- retical framework is used to discuss interactions among the elements of social media design, learning, and the building of community by individuals with disabilities

Análisis del uso del vídeo en una muestra de redes sociales y plataformas online, de contenido sociosanitario y ámbito nacional

En los últimos años un gran número de redes sociales en el ámbito de la salud han aparecido en Internet con el objetivo de dar respuesta a la necesidad de participación de los usuarios y tratar de unir sus intereses con los de profesionales médicos y organismos relacionados. En paralelo, el formato video está teniendo relevancia como medio de comunicación. Sólo hay que echar un vistazo a las estadísticas Alexa que sitúan YouTube como la 4º página más vista en España, o la encuesta de usuarios de Internet (AIMC, 2010) donde el 71.7% de las actividades realizadas es el visionado de vídeos. En EEUU comenzó a explorarse la combinación de ambos elementos con algunas iniciativas interesantes, pero se desconoce en nuestro ámbito nacional si esta tendencia se ha extendido. A través de este artículo se describe la investigación realizada en el ámbito de los organismos sanitarios y asociaciones de pacientes, para determinar en qué grado se utiliza el contexto visual. El resultado indica que tras el inicial impulso, se está canalizando hacia iniciativas institucionales de información sanitaria audiovisual, así como a la utilización como elemento de información en los grupos sociales, el cual logra por ahora tibios resultados interactivos.En els darrers anys un gran nombre de xarxes socials en l'àmbit de la salut han aparegut a Internet amb l'objectiu de donar resposta a la necessitat de participació dels usuaris i tractar d'unir els seus interessos amb els de professionals mèdics i organismes relacionats. Alhora el format vídeo comença a tenir rellevància com a mitjà de comunicació. Només cal fer una ullada a les estadístiques d'Alexa que situen YouTube com la 4a pàgina més vista a Espanya, o l'enquesta d'usuaris d'Internet (AIMC, 2010) on el 71.7% de les activitats realitzades és el visionat de vídeos. Als EUA es va començar a explorar la combinació d'ambdós elements amb algunes iniciatives interessants, però es desconeix si aquesta tendència s'ha estès en el nostre àmbit nacional. A través d'aquest article es descriu la investigació realitzada en l'àmbit dels organismes sanitaris i associacions de pacients, per a determinar en quin grau s'utilitza el context visual. El resultat indica que després de l'impuls inicial, s'està canalitzant cap a iniciatives institucionals d'informació sanitària audiovisual, així com la utilització com a element d'informació en els grups socials, el qual aconsegueix per ara tebis resultats interactius.In recent years a large number of social networks in the field of health have appeared on the Internet in order to meet the users' need for participation and trying to unite their interests with those of medical professionals and related organizations. In parallel, the video format is to be relevant as a means of communication. Just take a look at the Alexa statistics which point out YouTube as the 4th most viewed website in Spain, or the Internet users survey (AIMC, 2010) where 71.7% of the activities are video viewing. In the U.S. it was explored the combination of both with some interesting initiatives, but whether this trend has extended to our national level is unknown. Through this article it is described the research in the field of health agencies and patient groups to determine to what extent is used visual context. The results indicate that after the initial impulse is channelled into audiovisual health information institutional initiatives, as well as using videos as a piece of information in social groups, which for now leads to lukewarm interactive results