scholarly journals The construction of rare disease discourse on YouTube: highlighting a disparity between policy rhetoric and patient practices around public engagement

2021 ◽  
Vol 6 ◽  
pp. 361
Author(s):  
Matthew Hanchard
Keyword(s):  
Social Media ◽  
Rare Disease ◽  
Rare Diseases ◽  
Public Engagement ◽  
Knowledge Exchange ◽  
Social Media Platforms ◽  
Media Interaction ◽  
Different Levels ◽  
Forms Of Knowledge

Background: Policy rhetoric around the 6,000-8,000 rare diseases affecting 300 million people worldwide often focuses on public engagement. Meanwhile, medical authorities tend either to treat patients with rare diseases as pre-categorised data sources, proffer to them notions of technological self-care as empowerment, or recruit them as advocacy allies. Conversely, people living with rare diseases often mobilise and engage with one another in self-organised communities via social media to share discussion, information, and resources. How rare disease discourse forms on specific social media platforms, the role of different actors (including medical authorities and algorithms), and its relation to public engagement policy are poorly understood. Methods: This paper examines data on YouTube video watching/sharing (gathered from YouTube’s API via DMI’s ‘Data Tools for YouTube’) through social network analysis (read through a controversy analysis lens). Results: The paper identifies eight patterns – each revolving around different levels of: focus on rare disease content; engagement between content and viewers, i.e. through likes, dislikes, and surrounding particular videos; permeability of videos between categories; and repetition in viewers watching the same video. Across six of the patterns, the paper finds a rare disease issue-network forming, where discourse is constructed through three distinct communication strategies, each garnering a different form of engagement. Conclusions: Overall, the paper highlights a disconnect between how rare disease discourse is enacted on YouTube and policy promises of public engagement, with potential spaces for dialogue often closed off by medical authorities. To close, the paper provides recommendations for how policymakers might engage with and facilitate more inclusive forms of social media interaction between specific rare disease related communities and clinicians to develop more meaningful forms of knowledge exchange.

scholarly journals Platformed Interactions: How Social Media Platforms Relate to Candidate–Constituent Interaction During Finnish 2015 Election Campaigning

2020 ◽  
Vol 6 (2) ◽  
pp. 205630512090385 ◽  
Author(s):  
Matti Nelimarkka ◽  
Salla-Maaria Laaksonen ◽  
Mari Tuokko ◽  
Tarja Valkonen
Keyword(s):  
Social Media ◽  
Critical Role ◽  
Democratic Process ◽  
Critical Perspective ◽  
Digital Platforms ◽  
Campaign Strategy ◽  
Parliamentary Elections ◽  
Social Media Platforms ◽  
Media Interaction

Interaction between candidates and constituents via social media is a well-studied domain. The article takes this research further through a synthesis with platform studies, emerging scholarship that applies a critical perspective to the role of digital platforms in society. Examination of candidate–constituent interaction via Twitter and Facebook during the 2015 Finnish parliamentary elections revealed that the types of interaction differ between the two platforms: Facebook was used for formal campaigning and for praising and expressing support, while Twitter was utilized for information and for seeking and sharing opinions. An additional finding is that interaction approaches may be platform-specific, with socio-emotional functions being employed more often by candidates than constituents on Facebook while no such difference existed for Twitter. On the basis of the implication that platforms have a critical role in the nature of candidate–constituent social media interaction, we discuss the implications of platformed interaction for the democratic process, suggesting that campaign strategy may exploit it in ways that may even necessitate regulation. Furthermore, scholars of social media interaction might need to consider the broader ramifications of the findings, and contributions to theory that acknowledge platforms’ part in interaction may be needed.

Coming out of the closet? Audience reactions to the heteronormative disruptive advertising

2020 ◽  
Vol 3 (2) ◽  
pp. 75-102
Author(s):  
Ramasela Semang L. Mathobela ◽  
Shepherd Mpofu ◽  
Samukezi Mrubula-Ngwenya
Keyword(s):  
Social Media ◽  
Human Rights ◽  
Coming Out ◽  
Gender Issues ◽  
Qualitative Approach ◽  
Positive Development ◽  
Global Trend ◽  
Social Media Platforms ◽  
The Media

An emerging global trend of brands advertising their products through LGBTIQ+ individuals and couples indicates growth of gender awareness across the globe. The media, through advertising, deconstructs homophobia and associated cultures through the use of LGBTIQ+s in commercials. This qualitative research paper centres the advancement of debates on human rights and social media as critical in the interaction between corporates and consumers. The Gillette, Chicken Licken‘s Soul Sisters and We the Brave advertisements were used to critically analyse how audiences react to the use of LGBTIQ+ characters and casts through comments posted on the brands‘ social media platforms. Further, the paper explored the role of social media in the mediation of significant gender issues such as homosexuality that are considered taboo to engage in. The paper used a qualitative approach. Using the digital ethnography method to observe comments and interactions from the chosen advertisement‘s online platforms, the paper employed queer and constructionist theories to deconstruct discourses around same-sex relations as used in commercials, especially in quasiconservative. The data used in the paper included thirty comments of the brands customers and audiences obtained from Twitter, Facebook and YouTube. The paper concludes there are positive development in human rights awareness as seen through advertisements and campaigns that use LGBTIQ+ communities in a positive light across the world.

Revolutionizing Mental Health with Social Media

2019 ◽  
pp. 259-284
Author(s):  
Munmun De Choudhury
Keyword(s):  
Social Media ◽  
Well Being ◽  
Linguistic Expression ◽  
Ethical Considerations ◽  
Self Disclosure ◽  
Vulnerable Communities ◽  
Tailored Interventions ◽  
Challenges And Opportunities ◽  
Social Media Platforms

Social media platforms have emerged as rich repositories of information relating to people’s activities, emotions, and linguistic expression. This chapter highlights how these data may be harnessed to reason about human mental and psychological well-being. It also discusses the emergent role of social media in providing a platform of self-disclosure and support to distressed and vulnerable communities. It reflects on how this new line of research bears potential for informing the design of timely and tailored interventions, provisions for improved personal and societal well-being assessment, privacy and ethical considerations, and the challenges and opportunities of the increasing ubiquity of social media.

A market-based rationale for the privacy paradox

2021 ◽  
pp. 016344372110158
Author(s):  
Opeyemi Akanbi
Keyword(s):  
Social Media ◽  
Market Structures ◽  
Media Companies ◽  
The Social ◽  
Social Media Platforms ◽  
Privacy Paradox ◽  
The Individual ◽  
Privacy Risks ◽  
Social Collective

Moving beyond the current focus on the individual as the unit of analysis in the privacy paradox, this article examines the misalignment between privacy attitudes and online behaviors at the level of society as a collective. I draw on Facebook’s market performance to show how despite concerns about privacy, market structures drive user, advertiser and investor behaviors to continue to reward corporate owners of social media platforms. In this market-oriented analysis, I introduce the metaphor of elasticity to capture the responsiveness of demand for social media to the data (price) charged by social media companies. Overall, this article positions social media as inelastic, relative to privacy costs; highlights the role of the social collective in the privacy crises; and ultimately underscores the need for structural interventions in addressing privacy risks.

scholarly journals Producing deflective online strategies: Lessons from New Zealand women’s management of social media engagement

2021 ◽  
pp. 1-16
Author(s):  
Sarah Hendrica Bickerton ◽  
Karl Löfgren
Keyword(s):  
Social Media ◽  
New Zealand ◽  
Public Engagement ◽  
Analytical Approach ◽  
Gender Effect ◽  
Social Location ◽  
Strategic Approach ◽  
Online Strategies ◽  
Twitter Users ◽  
Different Levels

Public engagement is a gendered experience, whether offline or online, something which is reflected in women’s experiences of social media. In this article, we seek to systematically explore the experiences from politically engaged women twitter users in New Zealand in order to draw some lessons, through a thematic and interpretative analytical approach, at four different strategic levels on how to deflect intimidating and aggressive behaviour. We conclude that understanding strategically how structural social locations like gender effect the ability to contribute to political participation and engagement, if addressed, can produce more inclusive and productive online political and policy spaces. Further, this strategic approach involves connecting together different levels of response to online negativity such as platform tools, space-curation, and monitoring, having these made coherent with each other, as well as with this strategic understanding of how structural social location plays into access and use of online political and policy spaces.

scholarly journals Us Mob Online: The Perils of Identifying as Indigenous on Social Media

Genealogy ◽  
2021 ◽  
Vol 5 (2) ◽  
pp. 52
Author(s):  
Bronwyn Carlson ◽  
Tristan Kennedy
Keyword(s):  
Social Media ◽  
Indigenous People ◽  
Indigenous Peoples ◽  
Mixed Methods Research ◽  
Indigenous Communities ◽  
Digital Environment ◽  
Collective Identities ◽  
Social Media Platforms ◽  
Insight Into

Social media is a highly valuable site for Indigenous people to express their identities and to engage with other Indigenous people, events, conversations, and debates. While the role of social media for Indigenous peoples is highly valued for public articulations of identity, it is not without peril. Drawing on the authors’ recent mixed-methods research in Australian Indigenous communities, this paper presents an insight into Indigenous peoples’ experiences of cultivating individual and collective identities on social media platforms. The findings suggest that Indigenous peoples are well aware of the intricacies of navigating a digital environment that exhibits persistent colonial attempts at the subjugation of Indigenous identities. We conclude that, while social media remains perilous, Indigenous people are harnessing online platforms for their own ends, for the reinforcement of selfhood, for identifying and being identified and, as a vehicle for humour and subversion.

Physical Distancing and Social Media Use in Emerging and Older Adults During COVID-19: Large Scale Cross-Sectional and Longitudinal Survey Study (Preprint)

2021 ◽  
Author(s):  
Thabo J van Woudenberg ◽  
Roy Hendrikx ◽  
Moniek Buijzen ◽  
Julia CM van Weert ◽  
Bas van den Putte ◽  
...  
Keyword(s):  
Older Adults ◽  
Social Media ◽  
Emerging Adults ◽  
Large Scale ◽  
Media Use ◽  
Longitudinal Survey ◽  
Social Media Use ◽  
Random Intercept ◽  
Social Media Platforms

BACKGROUND Although emerging adults play a role in the spread of COVID-19, they are less likely to develop severe symptoms after infection. Emerging adults’ relatively high use of social media as source of information raises concerns regarding COVID-19 related behavioral compliance (i.e., physical distancing) in this age group. OBJECTIVE Therefore, the current study investigated physical distancing in emerging adults in comparison to older adults and looked at the role of using social media for COVID-19 news and information in this regard. In addition, this study explored the relation between physical distancing and different social media platforms and sources. METHODS Secondary data of a large-scale national longitudinal survey (N = 123,848, 34.% male) between April and November 2020 were used. Participants indicated, ranging for one to eight waves, how often they were successful in keeping 1.5 meters distance on a 7-point Likert scale. Participants between 18 and 24 years old were considered young adults and older participants were identified as older adults. Also, a dummy variable was created to indicate per wave whether participants used social media for COVID-19 news and information. A subset received follow-up questions asking participants to indicate which platforms they have used and what sources of news and information they had seen on social media. All preregistered hypotheses were tested with Linear Mixed-Effects Models and Random Intercept Cross-Lagged Panel Models. RESULTS Emerging adults reported less physical distancing behaviors than older adults (b = -.08, t(86213.83) = -26.79, p < .001). Also, emerging adults were more likely to use social media for COVID-19 news and information (b = 2.48, SE = .11, Wald = 23.66, p = <.001), which mediated the association with physical distancing, but only to a small extend (indirect effect: b = -0.03, 95% CI = [-0.04; -0.02]). Opposed to our hypothesis, the longitudinal Random Intercept Cross-Lagged Panel Model showed no evidence that physical distancing was predicted by social media use of the previous wave. However, we did find evidence that using social media affected subsequent physical distancing behavior. Moreover, additional analyses showed that most social media platforms (i.e., YouTube, Facebook and Instagram) and interpersonal communication showed negative associations with physical distancing while others platforms (i.e. LinkedIn and Twitter) and Governmental messages showed no to a slightly positive associations with physical distancing. CONCLUSIONS In conclusion, we should be vigilant for physical distancing of emerging adults, but this study give no reason the to worry about the role of social media for COVID-19 news and information. However, as some social media platforms and sources showed negative associations, future studies should more carefully look into these factors to better understand the associations between social media use for news and information, and behavioral interventions in times of crisis.

From Organizational-Centric Engagement to Network-Centric Engagement: The Role of Autonomous Public Communities in a Mediated Public Policy Advocacy Network

2021 ◽  
Vol 7 (3) ◽  
pp. 205630512110382
Author(s):  
Aimei Yang ◽  
Maureen Taylor
Keyword(s):  
Public Policy ◽  
Social Media ◽  
New Deal ◽  
Public Engagement ◽  
Policy Advocacy ◽  
Social Movement Organization ◽  
Advocacy Network ◽  
Movement Organization ◽  
Nuanced Understanding

In this study, we explore how a social movement organization ( Sunrise.org ) and its autonomous public community advocated for the Green New Deal on social media. An autonomous public community is a group of publics that initially connect with each other through their engagement with a focal organization. Then, they go on to develop ties among themselves that go beyond simply responding to organizations’ messages. Autonomous public communities are ubiquitous on social media. Our research identifies unique patterns of interactions in an autonomous public community and finds that the Tertius Iungens orientation brings the network together. We also find that while the focal organization is not centralized in an autonomous public community, it still significantly affects tie formation and discourse as the networks evolve. Our study reveals a nuanced understanding of networked organization–public engagement where network structure and discourse are co-created by the organizations and the communities that they engage.

Understanding the Experiences of Anger in the Onset and Progression of Psoriasis: A Qualitative Study Using Social Media (Preprint)

2021 ◽  
Author(s):  
Olivia Hughes ◽  
Rachael Hunter
Keyword(s):  
Social Media ◽  
Qualitative Interviews ◽  
Psychosocial Interventions ◽  
Skin Condition ◽  
Future Research ◽  
Social Media Platforms ◽  
Chronic Skin ◽  
Skin Conditions ◽  
The Impact

BACKGROUND Psoriasis is a chronic inflammatory skin condition, which can be affected by stress. Living with psoriasis can trigger negative emotions, which may influence quality of life. OBJECTIVE This study explored the experiences of people with psoriasis with attention to the potential role of anger in the onset and progression of the chronic skin condition. METHODS Semi-structured qualitative interviews were conducted with twelve participants (n=5 females, n=7 males) recruited online from an advert on a patient charity’s social media platforms. Data were transcribed and analysed using thematic analysis. RESULTS Four key themes were identified: (1) ‘I get really angry with the whole situation:’ anger at the self and others, (2) the impact of anger on psoriasis: angry skin, (3) shared experiences of distress, and (4) moving past anger to affirmation. CONCLUSIONS Findings suggest that anger can have a perceived impact on psoriasis through contributing to sensory symptoms and unhelpful coping cycles and point to a need for enhanced treatment with more psychological support. The findings also highlight the continued stigma which exists for people living with skin conditions and how this may contribute to, and sustain, anger for those individuals. Future research could usefully focus on developing targeted psychosocial interventions to promote healthy emotional coping with psoriasis.

How to build employees' relationship capital through different enterprise social media platform use: the moderating role of innovation culture

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Liang Ma ◽  
Xin Zhang ◽  
Gaoshan Wang ◽  
Ge Zhang
Keyword(s):  
Social Media ◽  
Information Exchange ◽  
Content Type ◽  
Enterprise Social Media ◽  
Work Related ◽  
Innovation Culture ◽  
Social Media Platforms ◽  
Relationship Capital ◽  
Moderating Role

PurposeThe purpose of the present study is to build a research model to study how the use of different enterprise social media platforms affects employees' relationship capital, and the moderating role of innovation culture is also examined.Design/methodology/approachStructural equation modeling was performed to test the research model and hypotheses. Surveys were conducted in an electronic commerce company in China that uses different social media platforms, generating 301 valid responses for analysis.FindingsFirst, private social media used for work-related purposes can contribute to employees' relationship capital, and public social media QQ used for work-related purposes can contribute to employees' communication quality. WeChat used for social-related purposes has a positive effect on employees' information exchange. Second, innovation culture acts as a positive moderator between work-related media use and employees' information exchange, while innovation culture acts as a negative moderator between social-related WeChat use and employees' information exchange. Third, innovation culture acts as a positive moderator between work-related QQ use and employees' trust, while innovation culture acts as a negative moderator between social-related QQ use and employees' trust.Originality/valueFirst, this paper contributes to the information system (IS) social media literature by studying the effect of the use of different enterprise social media platforms used for different purposes on employees' relationship capital. Second, the authors contribute to relationship capital theory by clarifying that use of public and private social media platforms for social- and work-related purposes is an important driver of the formation of employees' relational capital. Third, the present study also contributes to enterprise social media literature by confirming that innovation culture acts as a different moderator between use of different enterprise social media platforms and employees' relationship capital.

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