Posts Tagged social media
The authors of an editorial published recently in Rehabilitation Psychology challenge a trend toward erasure of the term “disability” in hopes to improve disability cultural competency.
“Attempts to avoid the use of the word ‘disability’ and couch discussions in positive terminology or euphemisms can have unintended consequences,” says Carrie Pilarski, PhD, an assistant professor of clinical psychology in the Michigan Medicine Department of Physical Medicine and Rehabilitation, in a media release from Michigan Medicine – University of Michigan.
“Avoiding the term reinforces the idea that disability is a negative or undesired state.”
While the term “disability” is widely used and universally accepted, often there are other terms substituted, such as “differently abled,” “special needs,” and “physically challenged.”
“People use these terms because they see them as accentuating the strengths of people with disabilities,” she adds. “But despite the good intention, these terms are euphemisms that deny recognition of disability as a valued aspect of diversity and identity.”
In the commentary, Pilarski and her co-authors analyze the history of disability language, attitudes around disability language and disability as an identity, to demonstrate why the term “disability” is an important part of disability culture.
While Pilarski notes that avoiding the term “disability” has the unintended consequence of reinforcing ideas that disability is negative, the authors also explain the harmful effects of focusing on individuals with disabilities as inspirational.
“We want readers to understand that there is such a thing as ‘inspiration porn’ and this serves to objectify individuals with disabilities for inspiration,” she shares. “We also discuss balancing using person-first and identity-first language to help support the recognition that disability is an aspect of identity.”
In addition, the authors discuss the role of social media in disability identity and social justices.
“Social media has truly invigorated the disability justice movement,” Pilarski continues, in the release. “There have been many viral hashtags for disability issues, such as #cripthevote, #iamapreexistingcondition and #thisiswhatdisabilitylookslike, that have helped not only with personal identity, but with highlighting the culture and recognizing the history of oppression, especially at a time when disability rights and services are being rolled back on a national level.”
A campaign created to reclaim the term “disability” is #SayTheWord, the authors continue.
“#SayTheWord was created by people with disabilities to claim the term disability as a valued aspect of diversity, support solidarity within the disability community, and encourage those without a disability to stop tiptoeing around the term and use it,” Pilarski says.
“This campaign is very much encouraging disabled people to reclaim our identities, our community and our pride.”
The #SayTheWord movement is also helping to highlight social injustices in the disability community, the authors note, in the commentary.
“We also discuss in the commentary the role of psychology in supporting the understanding of disability as an aspect of diversity with social justice implications similar to other marginalized groups, such as the Black Lives Matter movement and the Me Too movement,” Pilarski comments.
“We’re not trying to make comparisons or to equate experiences when we reference these other groups,” she says. “We’re saying that failure to recognize disability as an aspect of diversity, similar to other marginalized groups, also has unintended consequences of reducing supports available for individuals with disabilities and their formation of a positive disability identity.”
The authors hope their commentary sparks more conversation between the disability community and mainstream media and improves cultural competency.
“Being reflective and understanding the sociopolitical implications of language on disability serves as a call to action for clinicians, educators, and all disability allies to normalize the word ‘disability’ and challenge the stigma associated with it. We should speak out against offensive language and the tendency to replace the word disability with euphemisms or using disability for inspiration,” Pilarski shares.
“Psychologists and other providers or mentors should honor others’ language preference while opening up a dialogue about the underlying attitudes and beliefs that shape their preferred selection of terminology.
“We hope that future research can center on disabled voices in order to support solidarity in the disability community, pride in disability identity and activism for social justice with reclaiming equal access and rights in legislation and policies,” she concludes.
[Source(s): Michigan Medicine – University of Michigan, EurekAlert]
[ARTICLE] Internet and Social Media Use After Traumatic Brain Injury: A Traumatic Brain Injury Model Systems Study – Full Text
Objectives: To characterize Internet and social media use among adults with moderate to severe traumatic brain injury (TBI) and to compare demographic and socioeconomic factors associated with Internet use between those with and without TBI.
Setting: Ten Traumatic Brain Injury Model Systems centers.
Participants: Persons with moderate to severe TBI (N = 337) enrolled in the TBI Model Systems National Database and eligible for follow-up from April 1, 2014, to March 31, 2015.
Design: Prospective cross-sectional observational cohort study.
Main Measures: Internet usage survey.
Results: The proportion of Internet users with TBI was high (74%) but significantly lower than those in the general population (84%). Smartphones were the most prevalent means of Internet access for persons with TBI. The majority of Internet users with TBI had a profile account on a social networking site (79%), with more than half of the sample reporting multiplatform use of 2 or more social networking sites.
Conclusion: Despite the prevalence of Internet use among persons with TBI, technological disparities remain in comparison with the general population. The extent of social media use among persons with TBI demonstrates the potential of these platforms for social engagement and other purposes. However, further research examining the quality of online activities and identifying potential risk factors of problematic use is recommended.
THE INTERNET AND SOCIAL MEDIA are dominant forces in our lives in this Age of Information. Time spent on the Internet continues to grow steadily in the United States and worldwide, with mobile technology and social media driving much of the expansion.1 , 2 Social media tools, including social networking sites (SNSs) (eg, Facebook), blogs (eg, Tumblr), online content communities (eg, YouTube), and online forums (eg, Google Hangouts), encourage multidimensional communication where users can exchange information, connect to resources, and create social networks based on common interests.3 Such platforms can facilitate opportunities that would otherwise be limited by various barriers. Not only have the Internet and social media transformed the ways that we seek and gather information but they also appear to be changing the perception of communication and of what constitutes social support. For example, among college students, large and seemingly impersonal networks of Facebook friends are associated with greater perceived social support than smaller ones and expressing one’s feelings to such large networks may serve important needs for an evolving type of intimacy.4
People with disabilities may encounter obstacles to keeping up with these social trends and enjoying their advantages. A Pew survey5 in 2011 revealed that Americans with disabilities are less likely to use the Internet than their able-bodied counterparts (54% vs 81%). This remained true even after controlling for factors such as lower income, lower education, and older age. Moreover, people with disabilities were less likely to use online access methods such as broadband service and mobile devices, both of which are advantageous for seeking work, finding health information, and communicating remotely with others. Lack of experience with these technologies creates a vicious cycle, as less experience predicts less favorable outcome in studies using Web-based platforms to help mitigate the effects of disability.6 All of these trends are unfortunate, considering that the Internet and social media may be seen as electronic curb cuts7—resources to help offset the reduced mobility and social isolation that affect many people with disabilities.
Reduced social network size and loneliness are particularly common for persons with traumatic brain injury (TBI).8–11 Social networking through the Internet has the potential to alleviate this isolation. However, cognitive impairments typical after TBI9 , 11 (eg, impaired memory, attention, and organization) may pose an obstacle to learning and utilizing rapidly changing technology. There have been recent studies exploring the use of mobile technology to help people with acquired brain injury compensate for cognitive impairments12–14 and caregivers for such individuals to utilize online resources for support.15 , 16 A few studies have attempted to directly teach Internet access17 or use of social media18 to people with TBI. Others have surveyed people with TBI on their habitual use of the Internet19 or Facebook.20 Such studies quickly become outdated and difficult to generalize as new technologies and online trends emerge. As a result, there is an ongoing need for updated information regarding the use of online technology after TBI that can guide future efforts to narrow the “disability divide,”21 encourage Internet-based social participation, and develop online interventions to facilitate these novel forms of interaction.
In this study, we interviewed a large cohort of people at least 1 year after moderate or severe TBI to examine the current level of online activity among these individuals. Our aims were (1) to examine various aspects of Internet use among adults with TBI, particularly focusing on activities involving communication and social participation through social media platforms; and (2) to compare certain online activities, as well as demographic and socioeconomic factors associated with Internet use, between those with and without TBI, the latter based on published surveys of the general population.22 […]
Patients with epilepsy who participated in an online patient community showed improved ability to manage their condition well by making good medical decisions, according to a new study.
The study, published in the July 14 issue of Neurology, showed that patients with epilepsy taking part in the “Patients Like Me” online platform had improvements in “self-management” and “self-efficacy” of their condition.
Lead author, John D. Hixson, MD, University of California–San Francisco, explained to Medscape Medical News that these endpoints measured whether patients were making good decisions about how they managed their condition.
“Self-efficacy measures whether a patient knows the right thing to do, while self-management measures what the patient actually does. We chose these endpoints as they are validated metrics that reflect well what the online platform is suppose to deliver — helping patients manage their condition themselves.”
He pointed out that “Patients Like Me” is one of several online patient platforms available. These platforms are typically rooted in social media and allow patients to communicate with each other on forums. They also have educational videos and specific tools for tracking frequency and severity of seizures and recording medication side effects.
“This was a real-world study. It is the first study to do a rigorous assessment of this type of platform using validated measures,” Dr Hixson said.
[ARTICLE] Review of the literature on the use of social media by people with traumatic brain injury (TBI)
Purpose: To review the literature relating to use of social media by people with a traumatic brain injury (TBI), specifically its use for social engagement, information exchange or rehabilitation.
Method: A systematic review with a qualitative meta-synthesis of content themes was conducted. In June 2014, 10 databases were searched for relevant, peer-reviewed research studies in English that related to both TBI and social media.
Results: Sixteen studies met the inclusion criteria, with Facebook™ and Twitter™ being the most common social media represented in the included studies. Content analysis identified three major categories of meaning in relation to social media and TBI: (1) risks and benefits; (2) barriers and facilitators; and (3) purposes of use of social media. A greater emphasis was evident regarding potential risks and apparent barriers to social media use, with little focus on facilitators of successful use by people with TBI.
Conclusions: Research to date reveals a range of benefits to the use of social media by people with TBI however there is little empirical research investigating its use. Further research focusing on ways to remove the barriers and increase facilitators for the use of social media by people with TBI is needed.
Implications for Rehabilitation
- Communication disabilities following traumatic brain injury (TBI) can be wide-ranging in scope and social isolation with loss of friendships after TBI is common. For many people, social media is rapidly becoming a usual part of everyday communication and its use has the potential to increase communication and social participation for people with TBI.
- There is emerging evidence and commentary regarding the perceived benefits and risks, barriers and facilitators and purposes of use of social media within the TBI population.
- Risks associated with using social media, and low accessibility of social media sites, form barriers to its use. Facilitators for social media use in people with TBI include training the person with TBI and their communication partners in ways to enjoy and use social media safely.
- There is minimal rigorous evaluation of social media use by people with TBI and scant information regarding social media use by people with communication disabilities after TBI. Further investigation is needed into the potential benefits of social media use on communication, social participation and social support with the aim of reducing social isolation in people with TBI.
[ARTICLE] Visualisation of two-dimensional kinematic data from bimanual control of a commercial gaming system used in post-stroke rehabilitation – Full Text PDF
Kinematic data from two stroke participants and a healthy control were collected using a novel bimanual rehabilitation system. The system employs two customized PlayStation Move Controllers and an Eye camera to track the participants’ hand movements.
In this study, the participants played a Facebook game by symmetrically moving both hands to control the computer’s mouse cursor. The collected data were recorded during one game session, and movement distribution analysis was performed to create density plots of each participant’s hand motion in the XY plane.
This type of kinematic information that can be gathered by rehabilitation systems with motion tracking capabilities has the potential to be used by therapists to monitor and guide home-based rehabilitation programs.
[ARTICLE] Therapists’ Perceptions of Social Media and Video Game Technologies in Upper Limb Rehabilitation – Full Text HTML
Background: The application of technologies, such as video gaming and social media for rehabilitation, is garnering interest in the medical field. However, little research has examined clinicians’ perspectives regarding technology adoption by their clients.
Objective: The objective of our study was to explore therapists’ perceptions of how young people and adults with hemiplegia use gaming and social media technologies in daily life and in rehabilitation, and to identify barriers to using these technologies in rehabilitation.
Methods: We conducted two focus groups comprised of ten occupational therapists/physiotherapists who provide neurorehabilitation to individuals with hemiplegia secondary to stroke or cerebral palsy. Data was analyzed using inductive thematic analysis. The diffusion of innovations theory provided a framework to interpret emerging themes.
Results: Therapists were using technology in a limited capacity. They identified barriers to using social media and gaming technology with their clients, including a lack of age appropriateness, privacy issues with social media, limited transfer of training, and a lack of accessibility of current systems. Therapists also questioned their role in the context of technology-based interventions. The opportunity for social interaction was perceived as a major benefit of integrated gaming and social media.
Conclusions: This study reveals the complexities associated with adopting new technologies in clinical practice, including the need to consider both client and clinician factors. Despite reporting several challenges with applying gaming and social media technology with clinical populations, therapists identified opportunities for increased social interactions and were willing to help shape the development of an upper limb training system that could more readily meet the needs of clients with hemiplegia. By considering the needs of both therapists and clients, technology developers may increase the likelihood that clinicians will adopt innovative technologies.
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- [Editorial] Proportional Recovery in the Spotlight – Neurorehabilitation and Neural Repair
- [Abstract] Information Management in IoT Cloud-Based Tele-Rehabilitation as a Service for Smart Cities: Comparison of NoSQL Approaches
- [Abstract] Impaired force control contributes to car steering dysfunction in chronic stroke
- [Project] Functional Electrical Stimulation for at Home Rehabilitation | WalkHome Project | H2020 | CORDIS | European Commission
- [ARTICLE] The effect of the Bobath therapy programme on upper limb and hand function in chronic stroke individuals with moderate to severe deficits – Full Text
- [ARTICLE] Effect of Exercise on Gait Kinematics and Kinetics in Patients with Chronic Ischaemic Stroke – Full Text
- [Abstract] Systematic Review and Meta-analysis of Home-Based Rehabilitation on Improving Physical Function Among Home-dwelling Patients with a Stroke
- [Abstract] Home-based upper extremity stroke therapy using a multi-user virtual reality environment: a randomized trial
- [Abstract] BIGHand – A bilateral, integrated, and gamified handgrip stroke rehabilitation system for independent at-home exercise – Demo Video
- [VIDEO] Woman with Traumatic Brain Injury (TBI) Improves with Neurofeedback — Even Over 9 Years Later – YouTube
- [VIDEO] Stages of Brain Injury – YouTube
- [ARTICLE] An Exploratory Study of Predictors of Response to Vagus Nerve Stimulation Paired with Upper-Limb Rehabilitation After Ischemic Stroke – Full Text
- [ARTICLE] A Novel Robot-Aided Upper Limb Rehabilitation Training System Based on Multimodal Feedback – Full Text
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