"It’s like With the Pregnancy Tests": Co-design of Speculative Technology for Public HIV-related Stigma and its Implications for Social Media

Literature Title

"It’s like With the Pregnancy Tests": Co-design of Speculative Technology for Public HIV-related Stigma and its Implications for Social Media

Literature Information

• Thematic Domain: Human-Computer Interaction (HCI), public health technology, social media, and social support
• Keywords: HIV-related stigma, social media, technology design, co-design, privacy and security, vulnerable populations, mental health, support exchange

Research Background and Issues

• Problems and Challenges:

  • Public stigma surrounding HIV significantly impacts the physical and mental health of carriers, leading them to conceal their condition, delay medical care, and lack effective social support.
  • Current technology design primarily focuses on medication management and treatment, with limited exploration of technologies addressing privacy protection and stigma mitigation.
  • Social media is widely used to alleviate stigma for HIV carriers, but existing platform designs may not effectively address challenges related to privacy breaches or social support connections.

• Importance:

  • Effective design of social media technologies can improve the mental health and social support of HIV carriers and reduce the impact of stigma on them.
  • Exploring new technology design methods can help other vulnerable groups manage privacy and sensitive information disclosure issues effectively.

• Research Motivation and Related Work:

  • Previous studies have revealed the potential of HIV carriers to exchange support via social media, as well as tensions surrounding trust, privacy, data security, and interpersonal safety.
  • Research on these technology design issues remains insufficient, with unclear insights into how new design approaches can better help HIV carriers cope with public stigma.

Solution

• Proposed Methods/Solutions:

  • Utilizing "co-design" and "speculative design" methods, collaborating with 25 HIV carriers to explore future technology concepts aimed at addressing public stigma and enhancing the effectiveness of seeking social support via social media.
  • Designed multiple future technology concepts, including augmented reality glasses (AR eyeglasses), virtual reality glasses (VR eyeglasses), and implanted microchips.

• Innovative Aspects:

  • Starting from the real needs of HIV carriers, creatively exploring future technologies to expand existing design concepts.
  • Emphasizing the role of technology in stigma mitigation, privacy protection, security assurance, and educational content dissemination.
  • Combining co-creation with cutting-edge technology concepts to optimize services for vulnerable groups.

• Implementation Steps:

  1. Conduct multi-stage co-design workshops online, including concept generation, iteration, and evaluation.
  2. Analyze the technological functions and needs designed by participants.
  3. Develop comprehensive technology prototypes to further propose design recommendations for improving social media platforms.

Research Outcomes

• Specific Outcomes:

  • Collaboratively generated various future technology concepts:
    • InfoBot Robot: Provides educational and emotional support while facilitating peer-to-peer help exchange.
    • Implanted Microchip: Transmits HIV status data and educational materials via smartphone applications.
    • Augmented Reality Glasses: Enables sharing of medical information and educational support while protecting privacy.
    • Health Passport: Facilitates contactless transmission of medical information and support needs.
    • Meet-a-Peer Smartphone Application: Offers location-based support exchange functionality.
    • Virtual Reality Glasses: Detects stigmatizing behaviors and provides interactive educational support.

• Advantages:

  • Technology design emphasizes the real needs of vulnerable groups, avoiding awkwardness and potential conflicts from direct verbal interaction.
  • Strengthens privacy protection and data security, preventing sensitive information leaks.

• Experimental or Evaluation Results:

  • Participants unanimously expressed high acceptance of the technology prototypes, considering them helpful in reducing HIV-related stigma and improving social support experiences.
  • The study identified participants' detailed concerns regarding technological functions and privacy needs, providing specific recommendations for designing social media.

• Limitations and Future Directions:

  • The sample predominantly included white, male, and U.S.-based participants, necessitating greater diversity in racial and socioeconomic backgrounds.
  • Ethical issues surrounding technology, such as data storage and sensitive information filtering mechanisms, require further exploration.
  • Subsequent research should validate the feasibility of future technology concepts and assess ethical and technical challenges in practical applications.

This study offers new perspectives on social media and technology design, proposing feasible design concepts and models to address privacy and stigma issues faced by HIV carriers. It also provides methodological guidance for the practice of technology design for vulnerable groups.