So I Can Feel Normal: Participatory Design for Accessible Social Media for Individuals with Traumatic Brain Injury

Document Title

So, I Can Feel Normal: Participatory Design for Accessible Social Media Sites for Individuals with Traumatic Brain Injury

Document Information

• Subject Area: Human-Computer Interaction (HCI), Assistive Technology, Social Media Accessibility
• Keywords: Traumatic Brain Injury (TBI), Social Media, Participatory Design, Accessibility, Cognitive Accessibility, Assistive Technology, Social Participation

Research Background and Issues

• Main Problems and Challenges:

  • Traumatic Brain Injury (TBI) often leads to long-term perceptual-motor, cognitive, psychosocial, and communication difficulties, limiting individuals' social participation.
  • While social media can help maintain social connections and provide emotional support, its complex interfaces and information overload make it difficult for TBI patients to fully benefit from its advantages.
  • Current social media platforms primarily focus on accessibility features for auditory and visual impairments (e.g., assistive text and captions), but lack adequate support for cognitive impairments, including TBI.
  • Existing research focuses more on defining usage barriers for TBI patients rather than proposing targeted solutions.

• Research Significance:

  • Social media has the potential to alleviate feelings of loneliness and improve mental health for TBI patients, but barriers must be addressed to ensure equal access for all users.

• Research Motivation:

  • The authors aim to use participatory design to uncover the actual needs and design visions of TBI patients, providing guidance for future technologies and social media platforms tailored to their requirements.

Solution

• Methods and Solutions:

  • Employing a remote participatory design (PD) approach, collaborating with 10 adults with long-term TBI to propose design recommendations for improving social media accessibility, primarily focusing on Facebook.
  • Participants expressed their usage pain points and solutions through activities such as interviews, hands-on tasks (e.g., "think-aloud"), creative ideation, and sketching.

• Innovative Contributions:

  • This study not only expands the research on TBI-related social media usage barriers but also, for the first time, proposes potential solutions defined by TBI patients themselves.
  • The design methods were appropriately adjusted for individuals with cognitive impairments, empowering participants to contribute their design inspirations.

• Implementation Steps and Key Techniques:

  • Exploration Phase: Observing and interviewing TBI patients to understand their pain points when using Facebook.
  • Ideation Phase: Encouraging participants to propose innovative solutions centered on specific problems.
  • Sketching Phase: Motivating participants to visualize their design ideas through sketches, such as customized interfaces and information filtering features.
  • Identified major pain points include: interface and information overload, triggers of negative emotions, self-presentation concerns related to TBI, and reduced confidence in social communication.

Research Findings

• Specific Findings:

  • Four major challenges faced by TBI patients when using Facebook were identified:

    1. Interface, Functionality, and Information Overload: TBI patients struggle with complex interfaces and multitasking, and frequent feature updates exacerbate their confusion.
    2. Negative Experiences and Social Comparison: Emotional dysregulation can amplify the impact of negative content, while social comparison leads to increased dissatisfaction with oneself.
    3. Self-Presentation Concerns Related to TBI: Patients worry that their pre-existing social circles may not accept their new identity, with some even wishing to create a different persona in virtual environments.
    4. Reduced Social Confidence: Difficulties in language organization and communication make them feel anxious and self-conscious about online interactions.

  • Proposed solutions include but are not limited to:

    • Simplified and customizable interface designs (e.g., allowing users to display only frequently used features).
    • Information prioritization mechanisms (e.g., filters based on keywords or topics).
    • Providing a private and secure virtual "space" for TBI patients to share experiences and resources.
    • Offering language and social communication assistive tools (e.g., preloaded comments, emotion detection, and language prediction tools).

• Advantages Compared to Existing Designs:

  • Unlike generic accessibility features (e.g., adjusting contrast, zooming text), these designs are more tailored to the cognitive impairments and emotional regulation needs of TBI patients.
  • Solutions are proposed from the patients' perspective, making them more practically applicable.

• Experimental or Evaluation Results:

  • Participants generally found these new design concepts to be closely aligned with their actual needs and felt that the project made them feel understood and empowered to participate in the design process.

• Limitations and Future Directions:

  • Limitations:
    • Lack of diversity in the sample, as all participants were white.
    • Online research may have excluded patients without adequate technological support.
    • The research process may have been problem-oriented, leading participants to focus more on negative experiences.
  • Future Research Directions:
    • Include patients from more diverse racial and cultural backgrounds to enhance the generalizability of the results.
    • Explore a broader range of social media platforms beyond Facebook.
    • Integrate psychological counseling to better support TBI patients in rebuilding their identity.