Search for: All records

Clinical researchers have identified sensory changes people with age-related cognitive changes, such as dementia and mild cognitive impairment, experience that are different from typical age-related sensory changes. Technology designers and researchers do not yet have an understanding of how these unique sensory changes affect technology use. This work begins to bridge the gap between the clinical knowledge of sensory changes and technology research and design through interviews with people with mild to moderate dementia, mild cognitive impairment, subjective cognitive decline, and healthcare professionals. This extended version of our ASSETS conference paper includes people with a range of age-related cognitive changes describing changes in vision, hearing, speech, dexterity, proprioception, and smell. We discuss each of these sensory changes and ways to leverage optimal modes of sensory interaction for accessible technology use with existing and emerging technologies. Finally, we discuss how accessible sensory stimulation may change across the spectrum of age-related cognitive changes. 

Background Prior research on health information behaviors of people with dementia has primarily focused on examining the types of information exchanged by people with dementia using various web-based platforms. A previous study investigated the information behaviors of people with dementia within a month of their diagnosis. There is an empirical gap in the literature regarding the evolution of health information needs and behaviors of people with dementia as their condition progresses. Objective Our work primarily investigated the information behaviors of people with dementia who have been living with the condition for several (4 to 26) years. We also aimed to identify their motivations for changing their information behaviors over time. Our primary research questions were as follows: how do people with dementia get informed about their condition, and why do people with dementia seek information about their condition? Methods We adopted an action research approach by including 2 people with dementia as members of our research team. Collaboratively, we conducted 16 remote 1-hour contextual inquiry sessions with people living with mild to moderate dementia. During the study sessions, the first 40 minutes included semistructured interviews with participants concerning their information behaviors, followed by a 20-minute demonstration of their information-seeking strategies. Data from these interviews were analyzed using a constructivist grounded theory approach. Results Participants described their information needs in terms of managing the disrupted physiological, emotional, and social aspects of their lives following a diagnosis of dementia. They used various information behaviors, including active search, ongoing search, monitoring, proxy search, information avoidance, and selective exposure. These information behaviors were not stagnant; however, they were adapted to accommodate the changing circumstances of their dementia and their lives as they worked to re-establish equilibrium to continue to engage in life while living with a degenerative neurological condition. Conclusions Our research revealed the motivations, changing abilities, and chosen strategies of people with dementia in their search for information as their condition evolves. This knowledge can be used to develop and improve person-centered information and support services for people with dementia so that they can more easily re-establish equilibrium and continue to engage in life. 

People with dementia may miss out on the benefits of using technology, because they often find it difficult to use. Usability testing is one method to identify barriers and areas for improvement in technology. Unfortunately, usability testing is often not conducted with people with dementia, independent of their caregivers. Difficulty recruiting local participants with dementia who regularly use technology further compounds the problem. Remote methods have been proposed as one approach to recruiting hard-to-reach populations. Currently, it is unclear how to effectively conduct remote summative usability testing with people with dementia. We recruited 15 participants. Five took part in the pilot study and 10 participated in the main study. We identify best practices and make suggestions for remote summative usability tests with people who have mild to moderate dementia, independent of caregivers. We discuss our findings in three sections: (1) logistics for planning remote summative usability testing, (2) approaches for conducting remote summative usability testing, including modifications of research methods, and (3) considerations when evaluating findings from remote summative usability sessions. We also present modified usability testing methods we developed to meet the unique needs of users with mild to moderate dementia, and summarize lessons learned and new directions for research on this topic. 

Background: Research suggests that direct exposure to suicidal behavior and acts of self-harm through social media may increase suicidality through imitation and modeling, with adolescents representing a particularly vulnerable population. One example of viral self-harming behavior that could potentially be propagated through social media is the Blue Whale Challenge (BWC). Objective: We investigate how people portray BWC on social media and the potential harm this may pose to vulnerable populations. Methods: We first used a grounded approach coding 60 publicly posted YouTube videos, 1112 comments on those videos, and 150 Twitter posts that explicitly referenced BWC. We deductively coded the YouTube videos based on the Suicide Prevention Resource Center (SPRC) Messaging guidelines. Results: Overall, 83.33%, 28.33%, and 68.67% of the YouTube videos, comments, and Twitter posts were trying to raise awareness and discourage participation in BWC. Yet, about 37% of the videos violated six or more of the SPRC messaging guidelines. Conclusions: These posts might have the problematic effect of normalizing BWC through repeated exposure, modeling, and reinforcement of self-harming and suicidal behavior, especially among vulnerable adolescents. Greater efforts are needed to educate social media users and content generators on safe messaging guidelines and factors that encourage versus discourage contagion effects. 

Introduction Social media has created opportunities for children to gather social support online (Blackwell et al., 2016; Gonzales, 2017; Jackson, Bailey, & Foucault Welles, 2018; Khasawneh, Rogers, Bertrand, Madathil, & Gramopadhye, 2019; Ponathil, Agnisarman, Khasawneh, Narasimha, & Madathil, 2017). However, social media also has the potential to expose children and adolescents to undesirable behaviors. Research showed that social media can be used to harass, discriminate (Fritz & Gonzales, 2018), dox (Wood, Rose, & Thompson, 2018), and socially disenfranchise children (Page, Wisniewski, Knijnenburg, & Namara, 2018). Other research proposes that social media use might be correlated to the significant increase in suicide rates and depressive symptoms among children and adolescents in the past ten years (Mitchell, Wells, Priebe, & Ybarra, 2014). Evidence based research suggests that suicidal and unwanted behaviors can be promulgated through social contagion effects, which model, normalize, and reinforce self-harming behavior (Hilton, 2017). These harmful behaviors and social contagion effects may occur more frequently through repetitive exposure and modelling via social media, especially when such content goes “viral” (Hilton, 2017). One example of viral self-harming behavior that has generated significant media attention is the Blue Whale Challenge (BWC). The hearsay about this challenge is that individuals at all ages are persuaded to participate in self-harm and eventually kill themselves (Mukhra, Baryah, Krishan, & Kanchan, 2017). Research is needed specifically concerning BWC ethical concerns, the effects the game may have on teenagers, and potential governmental interventions. To address this gap in the literature, the current study uses qualitative and content analysis research techniques to illustrate the risk of self-harm and suicide contagion through the portrayal of BWC on YouTube and Twitter Posts. The purpose of this study is to analyze the portrayal of BWC on YouTube and Twitter in order to identify the themes that are presented on YouTube and Twitter posts that share and discuss BWC. In addition, we want to explore to what extent are YouTube videos compliant with safe and effective suicide messaging guidelines proposed by the Suicide Prevention Resource Center (SPRC). Method Two social media websites were used to gather the data: 60 videos and 1,112 comments from YouTube and 150 posts from Twitter. The common themes of the YouTube videos, comments on those videos, and the Twitter posts were identified using grounded, thematic content analysis on the collected data (Padgett, 2001). Three codebooks were built, one for each type of data. The data for each site were analyzed, and the common themes were identified. A deductive coding analysis was conducted on the YouTube videos based on the nine SPRC safe and effective messaging guidelines (Suicide Prevention Resource Center, 2006). The analysis explored the number of videos that violated these guidelines and which guidelines were violated the most. The inter-rater reliabilities between the coders ranged from 0.61 – 0.81 based on Cohen’s kappa. Then the coders conducted consensus coding. Results & Findings Three common themes were identified among all the posts in the three social media platforms included in this study. The first theme included posts where social media users were trying to raise awareness and warning parents about this dangerous phenomenon in order to reduce the risk of any potential participation in BWC. This was the most common theme in the videos and posts. Additionally, the posts claimed that there are more than 100 people who have played BWC worldwide and provided detailed description of what each individual did while playing the game. These videos also described the tasks and different names of the game. Only few videos provided recommendations to teenagers who might be playing or thinking of playing the game and fewer videos mentioned that the provided statistics were not confirmed by reliable sources. The second theme included posts of people that either criticized the teenagers who participated in BWC or made fun of them for a couple of reasons: they agreed with the purpose of BWC of “cleaning the society of people with mental issues,” or they misunderstood why teenagers participate in these kind of challenges, such as thinking they mainly participate due to peer pressure or to “show off”. The last theme we identified was that most of these users tend to speak in detail about someone who already participated in BWC. These videos and posts provided information about their demographics and interviews with their parents or acquaintances, who also provide more details about the participant’s personal life. The evaluation of the videos based on the SPRC safe messaging guidelines showed that 37% of the YouTube videos met fewer than 3 of the 9 safe messaging guidelines. Around 50% of them met only 4 to 6 of the guidelines, while the remaining 13% met 7 or more of the guidelines. Discussion This study is the first to systematically investigate the quality, portrayal, and reach of BWC on social media. Based on our findings from the emerging themes and the evaluation of the SPRC safe messaging guidelines we suggest that these videos could contribute to the spread of these deadly challenges (or suicide in general since the game might be a hoax) instead of raising awareness. Our suggestion is parallel with similar studies conducted on the portrait of suicide in traditional media (Fekete & Macsai, 1990; Fekete & Schmidtke, 1995). Most posts on social media romanticized people who have died by following this challenge, and younger vulnerable teens may see the victims as role models, leading them to end their lives in the same way (Fekete & Schmidtke, 1995). The videos presented statistics about the number of suicides believed to be related to this challenge in a way that made suicide seem common (Cialdini, 2003). In addition, the videos presented extensive personal information about the people who have died by suicide while playing the BWC. These videos also provided detailed descriptions of the final task, including pictures of self-harm, material that may encourage vulnerable teens to consider ending their lives and provide them with methods on how to do so (Fekete & Macsai, 1990). On the other hand, these videos both failed to emphasize prevention by highlighting effective treatments for mental health problems and failed to encourage teenagers with mental health problems to seek help and providing information on where to find it. YouTube and Twitter are capable of influencing a large number of teenagers (Khasawneh, Ponathil, Firat Ozkan, & Chalil Madathil, 2018; Pater & Mynatt, 2017). We suggest that it is urgent to monitor social media posts related to BWC and similar self-harm challenges (e.g., the Momo Challenge). Additionally, the SPRC should properly educate social media users, particularly those with more influence (e.g., celebrities) on elements that boost negative contagion effects. While the veracity of these challenges is doubted by some, posting about the challenges in unsafe manners can contribute to contagion regardless of the challlenges’ true nature.