Hello! My name is Hajin Lim, and I'm rere to present our work, titled "Participatory design for accessible social media sites for individual with Traumatic Brain Injury."
HCI and brain rehabilitation and social media fesearchers from Wisconsin-Madison, Vanderbilt, and McMaster University collaborated on this research project,
as part of the Social Media Buidling Blocks Online project that aims to increase the social participation of people with brain injuries. As a background of this paper, Traumatic Brain Injury or TBI refers to the injury to the brain caused by external forces like car accident.
TBI can cause chronic impairments in physical, sensory, cognitive and communication abilities that can limit one's social participation.
As a tool for compensating their social participation, social media could be an effective outlet for TBI individuals.
However, individuals with TBI tend to reduce their social media usage after their injuries because of various challenges. Furthermore, while social media sites, such as Facebook, have offered accessibility option, primary focusing on vision help, there has been relatively little attention for individuals with TBI, who have complex cognitive and communication symptoms.
Therefore, this work aims to learn the challenges that individuals with TBI face using social media and elicit their ideas to inform the future design to enhance the accessibility of social media sites.
To address the research goals, we conducted remote one-on-one participatory design sessions with 10 participants who were in their chronic stage after their brain injuries.
We particularly recruited those who had Facebook accounts, as Facebook is the most widely used social media among TBI population.
Because of the COVID-19 lockdown at the time of study, and as individuals with TBI often have challenges in group communication, each session was conducted remotely and individually.
For engaging individual participants into session activities fully, we focused on providing personalized accommodation.
Also, we focused on building trust between individual participants and the facilitator as compensation for the group process.
Our participatory design sessions began with the exploration activities.
First of all, we asked participants to freely share their TBI stories to build rapport with them, and talk about their general Facebook experience and perception, particularly before and after injury.
Further, we ask them to think aloud to learn how they actually used Facebook while sharing their screens.
After then, participants identified their primary design goals that they wanted to address in the sessions and brainstormed multiple solution ideas.
Among the brainstormed ideas, they chose 1 or 2 of them and further developed them into design sketches. As a result, we identified 5 themes on challenges that participant experienced in using Facebook and diverse solution ideas to address them.
And, we examined that how each of challenges and solution ideas were linked to the types of TBI symptoms.
We first found that participant experienced difficulties to adjusting to social media after injury
Because of lingering physical and cognitive symptoms, they experienced immediate difficulties in accessing social media in their early days after injury.
While participants managed to gradually recover and return to Facebook, they tended to limit their social connection, presence and self-presentation
on social media.
One of the main reason for that was due to interface, feature, and information overload. Many participants reported that being on Facebook required them to do multitasking
because of the complicated interface and feature structures.
Especially, tracking and maintaining attention was challenging for them.
As a result, they found it hard to search and locate information that they wanted to access.
To address these challenges, some participants suggested that the speech and gaze-based guide to maintain and direct their attention effectively. Also, they wanted to gain control over the configuration of social media site' interface and features.
For example, participant 1 wanted to minimize the menu structure of Facebook as in his sketch.
We also found that participant also showed a high level of emotional reactivity when confronted with diverse kinds of information as a result of impairment in their emotional self-regulation.
Some even mentioned that being on Facebook felt like a series of triggering events by unintentionally being exposed to political and sensitive topics.
Further, the majority of participants perceived Facebook as a place for presenting only the sugary and fake representations of lives. Even though they saw many things on Facebook were fake,
they often compared themselves to non-injured peers, and felt that they were inadequate and not normal.
To deal with such negativity and social comparison, participants wanted control over the information they were exposed
to on social media feed, which were represented in participant 9's and 8's sketches.
Further, many participants mentioned that it was extremely challenging for them to accept
altered sense of identity as a result of TBI. Especially, those who had Facebook account before injury found it difficult to reconcile their pre- and post-TBI Facebook identities.
Therefore, they were reluctant to disclose their TBI and life changes to their pre-injury connections on Facebook.
Also, they had fears that no one on Facebook could understand their TBI experiences fully.
To gain supports and understanding, many participants said that they had joined TBI support groups on Facebook. However, they found that they did not actually lead to meaningful connection with other TBI survivors.
And, some even saw that joining support groups and following TBI related pages could even make their privacy and identity boundaries at risk,
as their Facebook activity could be shared with others to whom they did not wish to disclose their TBI.
To address these challenges, some participants envisioned
the secure and private subset of Facebook for exploring TBI without risking their privacy and boundaries, as represented in participant 3's TBI World idea.
Furthermore, participant 6 wanted smaller subgroups within a large TBI support group to facilitate meaningful connection among TBI survivors.
Finally, many participants felt incompetent in their language and social communication skills, which led to reduced confidence in communicating with others on social media.
Therefore, they often become overly self-conscious about their social communication skills, such as communicating with others in a socially appropriate manner.
To regain their confidence in communication, some participants suggested the automatic language support, such as text prediction, or auto complete features. In addition to that, they wished for support on social communication to ensure that they could communicate with others in socially appropriate manners.
For example, participant 9 suggested pre-loaded comment features that auto-populate appropriate comments.
Overall, findings from our studies suggest several design implications to improve accessibility of social media sites for individual with TBI. First of all, it suggests that support for adjusting to social media platform after brain injury will be essential.
It also points out that providing control over the interface and information need to be considered as an important accessibility goal.
Furthermore, social media side will need to provide ways to secure boundaries between pre- and post-TBI identities. Lastly, it will be necessary to provide both language and social communication help.
Even though we believe our study provides some research contribution, future work could address the limitation of this study, such as diversity of participants.
Also, practitioner and researchers should carefully evaluate the generalizability of our findings.
Thank you for listening, and here our main takeaways. More detail can be found on paper. We want to mention that this work has been supported by National Institutes of Health. And, please feel free to contact us for any further question. Thank you Again.